Ever been told your pain is “just a flare,” even when your labs look calm? We sit down with Mayo Clinic gastroenterologist Dr. Xiao Jing (Iris) Wang to unpack why symptoms can linger after inflammation is under control—and what to do about it. From constipation myths to the real mechanics of bloating, this conversation reframes gut discomfort through muscles, nerves, and breath, not just meds.

Dr. Wang breaks down pelvic floor function in clear, memorable language. Learn how the puborectalis sling preserves continence, why years of urgency or “holding it” can hardwire a constant clench, and how that leads to straining and incomplete emptying. She shares practical paths to diagnosis without over-reliance on expensive tests, smart ways to find qualified pelvic PT, and simple at-home tactics like an optimized toilet posture, the “anti‑Kegel,” and biofeedback fundamentals. We also explore why J‑pouch patients need their own testing norms and a different definition of “normal.”

Then we tackle bloating. Groundbreaking research shows many visibly distended bellies aren’t full of excess gas—the diaphragm is pushing down while the abdominal wall pooches out. Dr. Wang demonstrates how diaphragmatic breathing can retrain this pattern and why yoga, gentle twists, and abdominal massage move trapped gas better than most medications. Finally, we zoom out to the brain. When the gut’s “fire” is out but the alarm keeps blaring, neuromodulators, gut-directed hypnotherapy, and virtual reality can close the pain gates. You’ll hear how VR helps patients navigate bathroom anxiety, tolerate unsedated procedures, and feel safer in their own bodies.

Finally we talk to Dr. Wang about the genesis of her children's book called "Boo Can't Poo." It's a humorous story about a constipated ghost named Boo and his efforts to get his bowels back on track. It's a great read for parents who are working to potty train their toddlers but also for all us to re-learn how to poo! 

If you’ve wondered whether your pain is real when scans look fine, this is your validation and your roadmap. Subscribe, share with a friend who needs it, and leave a review to help more listeners find practical relief and a new way to think about gut health.

Links: 

• Boo Can't Poo book
• Yoga poses for constipation- Yoga Journal
• More yoga poses for constipation- Verywell Health
• Resources on disorder of the gut-brain axis and more from GI Psychology

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When your scope looks great but your day still falls apart, something’s missing. We sit down with Dr. Dawn Beaulieu, a Vanderbilt IBD specialist certified in functional medicine, to unpack a root-cause approach that complements biologics and brings relief where patients feel it most: sleep, fatigue, bowel consistency, and energy.

We get specific about what functional medicine actually is—science-based, holistic, and individualized—then trace how Dr. Beaulieu integrates it into a busy academic IBD center. From the “functional medicine tree” and Five Rs to team-based care with dietitians and social workers, she shows how nutrition, hydration, and nervous system training shift the gut-brain axis. We talk real-world food strategies that work for sensitive guts, why ultra-processed ingredients and dyes upset the microbiome, and how to ramp fiber without misery. She shares outcomes from Vanderbilt’s group programs, where patients improved quality-of-life, sleep, and fatigue in about twelve weeks, with some showing lower fecal calprotectin.

We also tackle supplements with nuance: which nutrients many IBD patients actually need, how to choose third‑party tested brands, and why you can’t out-supplement a bad diet. Dr. Beaulieu sets clear lines on when medication is essential for moderate to severe disease, then explores where GLP‑1 drugs may help overweight patients alongside standard care. Access matters too, so we highlight ways to find certified functional medicine providers, piece together a local team, and use tools like HRV training and Nerva to build daily resilience.

This is a grounded, empowering roadmap for anyone stuck between “remission” and “feeling well.” If the goal is fewer flares and more life, these are the levers you can pull today—without abandoning the therapies that work. Follow the show, share this episode with someone who needs a nudge toward better routines, and leave a review to help more people find the conversation.

Links: 

• Find a practitioner- Institute for Functional Medicine
• IBD Learning slides "Functional Medicine and Inflammatory Bowel Disease" with Dr. Beaulieu- Crohn's & Colitis Foundation USA
• Podcast with Dr. Beaulieu on FMP Essentials
• Podcast episode with Dr. Beaulieu on The Dr. Mark Hyman Show

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Remission rates don’t rise by accident—they rise when people, data, and purpose align. This week we were joined by our friend Becky Johnson Rescola, Executive Director and President of Improve Care Now (ICN), to unpack how a learning health network is transforming pediatric IBD care through shared data, quality improvement, and genuine partnership with families.

We trace ICN’s journey from ten centers in 2007 to a 100+ site network with a registry tracking over 33,000 active kids and young adults. Becky explains how consistent measurement and coaching improved remission rates, with growing emphasis on sustained and steroid‑free remission. You’ll hear a real-time example of change in motion: a shared decision-making tool piloted at eight centers to help families weigh adalimumab plus methotrexate, reflecting registry findings that combo therapy speeds remission with adalimumab but not infliximab. We also dig into how registry data supports off‑label insights, helps sponsors understand pediatric outcomes, and even flags potential trial participants through privacy‑preserving queries.

Beyond medications, we explore EMR integration with Epic to reduce data burden, targeted efforts to close gaps in race and ethnicity fields to spot disparities, and the network’s commitment to co‑producing resources with patients and parents. Becky brings the community to life through ICN’s conferences—scholarships, learning labs, and a welcoming vibe that empowers quieter voices to speak up and help set the agenda. From very early onset IBD and tailored transition to adult care, to smarter partnerships across GI and related conditions, the path forward is both practical and ambitious: make evidence usable, make participation easy, and make sure every child benefits whether or not they’re seen at an ICN center.

If this conversation sparks ideas or gives you hope, help us spread the word—follow the show, share it with someone who needs it, and leave a review with the question you want us to tackle next.

Links

• Improve Care Now's website
• ICN- Tools and resources for patients and parents

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A mouse who can’t eat cheese and an owl who loves her anyway—sometimes the simplest stories hold the biggest truths. We welcome author MB Mooney to share how The Mouse Who Couldn’t Eat Cheese grew from the life and legacy of Alex, a bright, owl‑loving kid who lived with Crohn’s disease and inspired a foundation, Beautiful Beyond the Pain. Instead of a medical explainer, MB wrote a friendship-first tale that helps children understand invisible illness, practice empathy, and see vulnerability as a path to connection.

We open up the creative process behind writing for kids and parents at once: crafting a title that hooks curiosity, choosing scenes that feel honest, and striking a tone that respects young readers without sanding down the hard parts. MB explains why children’s books are tougher than they look, how early readers—many without any IBD connection—found universal meaning in the story, and what it takes to put your heart on the page when criticism is part of the job. For aspiring authors in the chronic illness community, he shares a practical roadmap: draft freely, revise with audience in mind, find a writing group for accountability and critique, and build resilience for the inevitable one‑star review.

We also look ahead to future volumes featuring Alex the Owl, including a potential ADHD story drawn from MB’s family experience. Along the way we talk about making invisible illness visible, helping kids self‑advocate, and why every community benefits when friends learn to meet each other’s needs with flexibility and care. If you’re a parent, patient, educator, or creator looking for stories that heal and tools that help, this conversation is a warm, grounded guide.

If the episode resonates, follow the show, share it with a friend, and leave a quick review—your support helps more listeners find thoughtful conversations like this one.

Links: 

• MB Mooney's website
• The Mouse Who Couldn't Eat Cheese
• Camp Oasis- Crohn's & Colitis Foundation USA 
• A longer interview with MB about his book- Adventures in the Heart of Children's Book Authors podcast

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What if the decision you feared most was the one that finally set you free? We sit with Gaylyn Henderson—writer, model, and founder of Gutless and Glamorous—to trace her path from a swift, severe Crohn’s diagnosis at fourteen to an ostomy that gave her health, energy, and a voice loud enough to change minds.

Gaylynn opens up about the early years when prednisone and 6MP were the only options and hospital stays collided with high school milestones. She explains how stigma around surgery—echoed by culture and sometimes even clinicians—kept her in pain despite worsening Crohn's with fistulas. The turning point came with a loop ileostomy and near-instant relief: weight returned, pain lifted, and daily life felt possible again. That contrast fuels her mission to push back on misinformation, normalize ostomies, and help others avoid years of needless suffering.

We explore how a personal blog became a movement. Gaylyn shares the moment she hit “send,” the flood of messages from people who finally felt seen, and how modeling with Aerie made ostomy visibility mainstream. Her nonprofit, Gutless and Glamorous, builds community through modern, welcoming spaces that don’t feel like traditional support groups, connecting patients who can check in when symptoms surge and silence sets in.

Mental health takes center stage as Gaylyn unpacks the myth of “I should be able to handle this,” and we discuss why therapy and tools like EMDR can help after the crisis has passed. Chronic illness can be isolating; community is part of care. Expect candid talk about advocacy, ostomy life, body image, and the courage to redefine normal on your own terms.

If this conversation resonates, tap follow, share it with someone who needs it, and leave a review—your voice helps more people find the support they deserve.

Links: 

• Gutless and Glamorous website
• Gaylyn on Instagram
• More of Gaylyn's story in Elle magazine
• Gaylyn in The Mighty

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What does great IBD care look like when the system won’t make it easy? We sit down with Dr. Adam Ehrlich, Section Chief of Gastroenterology at Temple Health and GI fellowship program director, to explore how he builds patient-centered care in an underserved setting—where insurance denials, missing records, and real-life logistics collide with complex disease.

We talk about health literacy, trust, and the conversations that actually change outcomes. Adam explains how he frames risks and benefits with clarity, why the “risks of doing nothing” deserve equal airtime, and how he balances mode of therapy—IV, subcutaneous, or oral—against lifestyle, trauma history, pregnancy plans, and coverage rules. We dig into prison medicine’s constraints, from medication access to policy barriers around scheduling, and the creative problem-solving required to keep patients safe and informed. He shares why being honest about uncertainty builds credibility, and how an early investment in patient education pays off with better monitoring and shared targets for remission.

The episode also gets practical about personalization. We discuss drug levels with infliximab when severe colitis “loses” medication into the stool, when it’s wise to de-escalate dosing, and how habits from flare days can persist after inflammation settles. Adam offers tools to retrain routines, navigate IBS overlap, and align care with quality of life goals like driving, work travel, and showing up at a kid’s soccer game without anxiety. As a fellowship director, he reveals how he equips new gastroenterologists to handle today’s broader therapy menu, think beyond flowcharts, and advocate through insurance barriers with persistence and purpose.

If this conversation resonates, tap follow, share it with someone who needs it, and leave a quick review. Your support helps more people find practical, human-centered IBD care.

Links and organizations to follow! 

• Color of Gastrointestinal Illness (COGI)- mission to improve quality of life for BIPOC who are affected by IBD and other GI issues. 
• The Stephanie A. Wynn Foundation - mission to eliminate health disparities and improve outcomes for individuals and communities affected by Inflammatory Bowel Diseases through comprehensive support services, with priority given to underserved populations facing the greatest barriers to healthcare.
• Strategic Alliance for Intercultural Advocacy in GI (SAIA)- mission to create culturally sensitive resources, research, and education for patients, caregivers and healthcare providers managing chronic GI conditions in order to minimize delays, dispel stigma, promote early diagnosis, and improve access to treatment for all.

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The hardest part isn’t always the pain; it’s the fog—those days when the labels keep changing, the meds blur together, and the bills are louder than your body. That’s where Stephanie A. Wynn stepped in, transforming her Crohn’s journey into a movement for clarity, access, and equity.

We sit down with Stephanie—author, podcaster, and founder of the Stephanie A. Wynn Foundation—to unpack how a misdiagnosis spiral, two heartbreaking pregnancy losses, and a sixth GI finally led to answers and action. She walks us through the IBD Patient Navigator Program she built to connect people with the care team they actually need: GI, primary care, mental health, dietitian, pelvic floor therapist, and, when needed, a colorectal surgeon. We talk about practical tools that change outcomes—recording appointments, coming with three priority questions, tracking symptoms and meals, and learning your labs so they can become signals instead of mysteries.

Stephanie also opens up her book Navigating IBD: A Six-Week Blueprint for Better Gut Health which she designed to slow overwhelm and teach the language of care including treatment decisions, and what “knowing your numbers” truly means. We dig into clinical trials—why she calls it clinical research, how to qualify, what to ask about aftercare, and ways to participate through labs or tissue samples to boost representation. We tackle health disparities and social determinants of health head-on: transportation, refrigeration for meds, school support, and why trust is built by showing up with real solutions.

This is a conversation about agency and community for anyone living with Crohn’s disease or ulcerative colitis. You’ll leave with a sharper checklist, a stronger voice, and a reminder that you are not alone—and that the right tools and team can change everything.

If this helped you, follow the show, leave a quick review, and share it with someone who needs a clear path forward today.

Links: 

• Link to Stephanie's IBD book
• The Stephanie A. Wynn Foundation
• Racial and Ethnic Disparities in Medical Advancements and Technologies- Kaiser Family Foundation 

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Welcome to episode 1 of our series- IBD Can Eat Me guest hosted by Stacey Collins, IBD RD. In this series, Stacey will interview other Dietitians who also specialize in IBD. This week we welcomed Venus Kalami- board-certified pediatric Dietitian Nutritionist! 

What if the strict diet you’re told to follow does more harm than good? We sit down with pediatric dietitian Venus to unpack how nutrition in IBD can support health without sacrificing joy, culture, or family life. From Stanford Children’s IBD and celiac center to medical affairs and public education, Venus brings a rare mix of clinical depth and human warmth—and she doesn’t shy away from hard truths.

We dig into the pressure families feel to “do everything,” the overuse of restrictive therapeutic diets, and the real risks that come with them: malnutrition, ARFID, pediatric feeding disorders, and lasting food trauma. Venus shares a clear way to tell the difference between a transient food reaction and an inflammatory flare, helping patients step off the rollercoaster of fear and over-correction. She also shows how to make care culturally inclusive with simple, powerful questions: What do you like? What do you cook? What feels doable at home? It’s a move from generic handouts to plans that honor heritage foods and real life.

You’ll hear a vivid case study where a patient referred for low FODMAP improved dramatically without elimination—just lactase with dairy, spreading fruit across the day, and changing other patterns developed from past food trauma. We talk about involving mental health early, “asking around the ask” when supplements come up, and borrowing pediatric best practices for adults who shouldn’t have to navigate IBD alone. The theme running through it all: patients deserve permission to dream beyond survival. Biomarkers matter, but so do birthdays, travel, and the comfort foods that make you feel at home.

If this conversation resonates, follow the show, share it with someone who needs a gentler path, and leave a review to help more people find evidence-based, humane IBD care. Your feedback shapes future episodes—what question should we tackle next?

• Nutrition Pearls podcast with Venus
• Venus on X
• Solid Starts app
• "Offering Nutritional Therapies to Patients with IBD: Even If You're Not An Expert"- Video from Nutritional Therapy for IBD

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Want a clear, human guide to modern IBD care without the jargon? We’re joined by Janette Villalon, a physician assistant at UC Irvine’s IBD Center, who brings a front-line view of what truly helps patients: personalized therapy choices, honest safety talk, and practical plans that fit real life. She traces the evolution from a handful of anti-TNFs to a wider toolkit—anti-integrins, IL-12/23 and IL-23 inhibitors, JAK inhibitors, and S1P modulators—and explains how we match treatments to goals like fast relief, fewer side effects, and coverage of extraintestinal issues such as arthritis, uveitis, and psoriasis.

We dig into how APPs power the day-to-day of IBD clinics, from education to monitoring and rapid access, and how the GHAPP Conference and national societies elevated advanced practice training. Janette breaks down when clinical trials make sense, why strict inclusion criteria matter, and how logistics can steer decisions when someone is very sick. She demystifies biosimilars, outlining FDA standards that support confident switches when insurance demands it, and shares how she helps patients balance infusions, injections, or pills against travel, work, and adherence.

For those planning a family, Janette offers timely guidance: aim for clinical and endoscopic remission three to six months before conception, continue pregnancy-safe maintenance therapy, and discuss starting low-dose aspirin at 12 to 16 weeks to lower preeclampsia risk, coordinated with maternal-fetal medicine.

Looking ahead, we explore precision medicine and AI—predictive markers, microbiome insights, and smarter monitoring that could reduce trial-and-error and catch flares early. The throughline is empowerment: ask questions, read, return for follow-ups, and shape your care around your life. We close with community resources from the Crohn’s & Colitis Foundation and a shout-out to Camp Oasis for young patients.

If this conversation helped you, subscribe, share it with a friend, and leave a quick review—what’s the one topic you want us to go deeper on next?

Links: 

• Gastroenterology & Hepatology Advanced Practice Providers (GHAPP) organization 
• Camp Oasis- Crohn's & Colitis Foundation USA
• IBD Medication Guide- Crohn's & Colitis Foundation USA
• Pregnancy & IBD video- Crohn's & Colitis Foundation USA

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A boxer in training. A terrifying spiral of symptoms. A life-saving surgery that changed everything. Jose Torres joins us to share how ulcerative colitis pulled him out of the ring and propelled him into purpose—building community, advancing equity, and living well with a J‑pouch in a city that isn’t designed for urgent needs.

We trace Jose’s path from misdiagnosis in Brooklyn to specialized care in Manhattan and the brutal logistics of public transit without bathrooms. He opens up about the cultural currents in his Mexican and Puerto Rican family—why speaking up took time, why steroids raised tough questions, and how food traditions collided with new IBD realities. The story turns on resilience: a colectomy and J‑pouch, early pouchitis, iron infusions, and then a decade of medication-free stability supported by smart nutrition, consistent exercise, and honest attention to mental health.

Jose also brings us inside the Crohn’s & Colitis Foundation—from literally ringing the office doorbell to roles in advancement, business development, and DEI leadership. We talk about real lived experience, research into disparities, and why culturally fluent care changes outcomes. Along the way, he shares practical tactics for managing frequency, a nudge toward pelvic floor physical therapy, and a grounded philosophy: don’t chase perfection, cultivate accountability and hope.

If stories of grit, culture, and community help you feel less alone with IBD, this one’s for you. Cheers!

Links: 

• Camp Oasis- Crohn's & Colitis Foundation USA
• Camp Purple- Crohn's & Colitis Foundation New Zealand
• About IBD podcast with Amber Tresca episode- "IBD in the Hispanic Community with Dr. Oriana Damas"

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Imagine being able to turn down the volume on gut pain, food fear, and medical anxiety—without white-knuckle coping or guesswork. We sit down with Dr. Ali Navidi, co-founder of GIpsychology.com and past president of the Northern Virginia Society of Clinical Hypnosis, to unpack how clinical hypnosis and gut-focused CBT help people with inflammatory bowel disease interrupt the gut-brain loop that keeps symptoms alive. No stage tricks here—just practical tools that retrain the nervous system, reduce visceral hypersensitivity, and restore a sense of control.

We explore the real differences between stage and clinical hypnosis and why trance is a natural state you already know how to access. Dr. Navidi explains how anchors—a simple conditioned cue—can trigger a calming response within seconds, whether you’re prepping for a colonoscopy, calling the insurance company, or navigating an unexpected flare. We dig into disorders of gut-brain interaction (DGBIs) that can drive symptoms even when labs look great, and why gut-focused CBT plus hypnosis outperforms one-size-fits-all mental health approaches for persistent GI distress.

Trauma and nocebo effects show up in subtle ways across the IBD journey. We get candid about medical trauma, memory reconsolidation, EMDR as a hypnotic protocol, and how conditioned food sensitivities form—like the “pizza panic” that lingers long after a flare. You’ll hear how to calm hypervigilance, rebuild trust with your body, and reintroduce foods safely. We also share details on a new eight-week telehealth group, created with the Crohn’s & Colitis Foundation and the American College of Gastroenterology, that pairs weekly skills training with recorded hypnosis sessions for daily practice.

Ready to try tools that actually change how your system reacts? Follow, share with a friend who needs hope, and leave a review to help others find the show. Your story might be the anchor someone else needs today.

Links: 

• Information about the IBD Psychotherapy Group
• Information on Disorder of the Gut-Brain Interaction (DGBI)
• Great resources from GI Psychology
• Article in the Atlantic
• Dr. Navidi on the About IBD Podcast with Amber Tresca

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Comedian Ian Goldstein takes us through his journey with Crohn's disease, beginning with his diagnosis at 16 when he was just trying to navigate the already challenging world of high school, SATs, and planning for college. With candid humor, he recounts the moment he realized something was seriously wrong – not just from frequent bathroom trips, but when a coworker pointed out his dramatic weight loss.

What follows is a rollercoaster of medical experiences that many in the IBD community will recognize – from the shock of needing a colonoscopy as a teenager to the trial and error of finding effective medications. Ian vividly describes his first major bowel obstruction during his senior year of college, complete with what he calls the "modern-day torture device" known as an NG tube. Despite his best efforts to manage his condition through diet alone, he eventually required surgery in 2022 to remove seven strictures from his small intestine.

The conversation takes a fascinating turn when Ian shares how he's transformed his medical journey into comedy shows. From "The Autoimmune Saloon" to a celebration party for meeting his healthcare deductible (complete with custom cupcakes and hats), he's found ways to create community while addressing serious issues like medical debt. These creative outlets not only helped him process his experiences but connected him with others who could offer crucial advice about doctors and treatments.

Perhaps most valuable are Ian's insights about navigating the healthcare system with a chronic illness. He speaks honestly about the frustration of insurance denials, the anxiety of unexpected medical bills, and the challenges of having an invisible disability. His experiences highlight the importance of self-advocacy, finding the right medical team, and building a supportive community.

Ready to laugh, cry, and feel a little less alone in your IBD journey? Listen as Ian shares his practical wisdom: record your doctor appointments to remember important information, and seek out community connections that might literally change your life. Whether you're newly diagnosed or a veteran of chronic illness, this conversation reminds us all that finding humor in dark places might be our most powerful medicine.

Links: 

• Ian's website
• New York Times article about Ian's party to celebrate meeting his healthcare deductible
• The Squeaky Wheel- satire publication that focuses on the experiences of people living with disabilities. 
• Tina's episode with us
• Dr. David Schwartzberg's episode with us
• Nicole's episode with us- Ian mentioned Nicole and how supportive she's been to him but we sadly had to cut that part out for length. But- get to know Nicole!! 

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Imagine visiting your gastroenterologist and feeling comfortable enough to discuss every aspect of how IBD affects your life—including your sexual health and practices. For many patients, particularly those in the LGBTQI+ community, this remains an elusive dream rather than reality.

Dr. Victor Chedid, gastroenterologist and director of Mayo Clinic's Pride Clinic, joins Bowel Moments to tackle this crucial gap in IBD care. With disarming honesty and clinical expertise, he reveals why addressing sexuality isn't just about inclusivity—it's about providing complete medical care. When 95% of providers believe discussing sexual health is important but only 27% actually do it, patients suffer in silence with questions that directly impact their quality of life.

The conversation dives deep into practical approaches for both patients and providers. Dr. Chedid shares his framework for discussing sexual practices with patients, from the straightforward question "What do you do for sex?" to navigating complex conversations around surgical interventions like J-pouch formation. For transgender patients, he unpacks recent research on gender-affirming hormones and IBD, emphasizing that life-saving gender-affirming care should never be withheld due to IBD concerns.

Perhaps most compelling is Dr. Chedid's perspective on cultural humility and intersectionality. Each patient's experience is shaped by multiple overlapping identities—their sexuality, gender, race, nationality, and more. Rather than making assumptions, he advocates for providers to "leave their biases at the door" and approach each person's unique situation with curiosity and respect.

"People living with IBD are the experts of their own bodies," Dr. Chedid reminds us in his powerful closing thoughts. "When they say something feels off, it's not a guess—it's lived experience." This principle forms the foundation of truly inclusive care—care that sees patients as whole people deserving of dignity, understanding, and comprehensive treatment.

Ready to advocate for more inclusive IBD care? Share this episode with your healthcare team and join the conversation about creating safe spaces for everyone in our community.

Links: 

• AGA's Pride Month Provider Spotlight on Dr. Chedid
• Dr. Chedid talking about forming the IBD Pride Clinic
• "Your Top 6 Questions Answered by Dr. Victor Chedid" -A Program Dedicated to IBD Patients from the LGBTQIA+ Community- Crohn's & Colitis Foundation- USA

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For two decades, Rachel Gebhardt has navigated the complex terrain of Crohn's disease with a refreshing perspective shaped by her father's experience with the same condition. Where her father let illness define him, Rachel chose a different path—one filled with humor, openness, and resilience—despite her case being more medically severe.

Rachel's journey encompasses four bowel surgeries and fourteen hospital admissions since 2020 alone, including a colostomy she affectionately named "Whoopie." With disarming candor, she shares the moment her surgeon showed her a photo of a woman in an American flag bikini with a matching ostomy bag cover as encouragement—a moment that eventually inspired her own celebratory beachside photo years later. Through skin infections, bowel obstructions, and dietary restrictions, Rachel maintains her commitment to living fully and modeling positive coping for her children.

The military healthcare system presented unique challenges, but also connected Rachel with Dr. Anish Patel at Brook Army Medical Center, who became not just her gastroenterologist but her advocate and ally. Their relationship exemplifies the profound difference compassionate, specialized care makes for patients with complex conditions. Rachel details her experience with hyperbaric treatments, medication complications, and the surprising remission she experienced only during pregnancy and breastfeeding—highlighting the understudied connection between hormones and IBD.

What resonates most deeply is Rachel's transformation from initially viewing her ostomy as "the end of the world" to embracing it as a source of freedom. Now training for a half marathon and hiking mountains previously inaccessible when bathroom urgency controlled her life, she's become an outspoken advocate for ostomy awareness. Her message is clear and powerful: life with an ostomy can be not just manageable, but genuinely good—a perspective desperately needed by those facing similar paths. For anyone navigating IBD or supporting someone who is, Rachel's story offers both practical wisdom and heartening hope.

Links: 

• United Ostomy Association
• Our episode with Dr. Anish Patel
• Pregnancy and Crohn's - video from Brigham & Women's IBD Center
• Pregnancy & Breastfeeding info- Crohn's Colitis UK

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What happens when your body declares war on multiple organs? Julie Davis knows this reality all too well. Her medical journey began with a celiac disease diagnosis at 18, followed by ulcerative colitis in college, but it was the sudden onset of autoimmune pancreatitis in 2011 that turned her world upside down.

Julie's story is remarkable not just for the rare combination of conditions she manages, but for the extraordinary resilience she's shown throughout her journey. As a dietitian who became a physician's assistant while battling debilitating pancreatitis flares, Julie brings unique perspective from both sides of healthcare. She takes us through the harrowing experience of multiple hospitalizations, specialists puzzling over her case at Mayo Clinic, and ultimately, the life-altering decision to have her pancreas completely removed in 2023.

The procedure—called total pancreatectomy with islet cell autotransplantation—is so rare that Julie couldn't find a single podcast about it. Her pancreatic cells were extracted and transplanted into her liver, turning her into what she describes as "essentially a type 1 diabetic" overnight. Despite this dramatic medical intervention and the insulin pump she now relies on, Julie's perspective remains incredibly positive.

Perhaps most inspiring is how Julie has refused to let her health conditions define her limitations. She completed PA school despite having an endoscopy and nerve block the same morning as important exams. She had three children through IVF while managing multiple autoimmune conditions. And today, she's passing on her hard-won wisdom to her daughter, who has inherited celiac disease.

Julie's message to fellow chronic illness warriors rings clear: "It doesn't define you. You can still do things that you love." Her extraordinary journey demonstrates that even the most complex medical challenges can't stand in the way of a determined spirit pursuing a fulfilling career, family life, and future.

Links: 

• The Juicebox Podcast
• Mission Cure: Nonprofit working in improve quality of life and bring more treatments to chronic pancreatitis 

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** Warning that this episode talks very candidly and descriptively about surgery and more.** 
Few IBD stories contain as many twists, complications, and near-death experiences as Bryan Schulze's journey with ulcerative colitis. What began with occasional bleeding during his military deployment escalated into a life-threatening medical emergency when doctors discovered he had been hemorrhaging internally for months. With severe anemia and barely conscious, Bryan's introduction to IBD came with a stark realization — he had been slowly dying without knowing it.

Bryan's candid account takes us through the harrowing reality of military service with undiagnosed IBD, the struggle to maintain dignity while bleeding profusely, and the complex surgeries that followed. After medication failures and complications that defy belief, Bryan underwent a full colectomy and J-pouch surgery that led to severe complications including a massive abdominal infection, wound vacuum treatments, and catastrophic surgical errors. 

Beyond the physical trauma, Bryan shares the emotional and professional toll of IBD. From workplace discrimination to failed career dreams, steroid-induced diabetes to heart failure, and battles with depression and anxiety — his story encompasses the full spectrum of challenges IBD patients may face. Yet through it all, Bryan found his way back through support from his family, reconnection with his faith, and an indomitable will to live.

Now serving as a police officer with a permanent ostomy bag, Bryan offers powerful wisdom to fellow IBD warriors: "Take a deep breath. It's not a life ender. It is a life changer. Be willing to adapt with it so that you can overcome it and still live the life that you were given to live." His message of resilience serves as a beacon for anyone facing seemingly insurmountable health challenges.

Have you been struggling with IBD? Share your story or questions with us, and remember that no matter how difficult your journey, you're never alone in this fight.

Links: 

• Our episode with Dr. Anish Patel
• Our episode with Matty Bowels! 
• Veterans with IBD Support Group- Cron's & Colitis Foundation USA
• About IBD Podcast episode with Dr. Anish Patel
• John's story of serving in the Royal Marines in the UK- Crohn's & Colitis UIK

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Kimberly LaRose's journey from a nine-year diagnostic odyssey to creating an award-winning vodka demonstrates the remarkable resilience found in the IBD community. After struggling with unexplained symptoms that doctors repeatedly misdiagnosed, Kimberly finally received her Crohn's disease diagnosis and discovered that gluten and corn were major inflammation triggers for her body.

Rather than seeing her dietary restrictions as limitations, Kimberly embraced a philosophy of "replacing, not removing." This positive mindset would prove transformative when she attended an event where she couldn't eat or drink anything due to her restrictions. What began as a half-joking call to a friend about creating their own vodka evolved into Wisher Vodka – a sugar beet-based spirit that's gluten-free, grain-free, and vegan.

The path from concept to award-winning product wasn't simple. Kimberly and her co-founder Emily researched 300 distillers, visited 60 personally, and developed a unique production process that includes lab testing every batch to ensure purity. Their commitment to quality and transparency has earned them multiple prestigious awards, including Grand Vodka of the Year with a remarkable 98-point taste rating from the Bartender Spirits Award.

Beyond the business success, Kimberly's story highlights how health challenges can unexpectedly open new doors. "I wouldn't have created Wisher had I not been diagnosed with Crohn's," she reflects. Her work supporting the Crohn's and Colitis Foundation further demonstrates her commitment to the IBD community that sparked her entrepreneurial journey.

Whether you're navigating dietary restrictions, seeking inspiration for managing chronic illness, or simply appreciate the story behind your spirits, Kimberly's journey reminds us that sometimes our greatest struggles lead to our most meaningful creations. 

Links: 

• Sip with Confidence! - Wisher Vodka's website
• Cocktail recipes

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Navigating the workplace while managing inflammatory bowel disease can feel like walking a tightrope—balancing health needs against career responsibilities. This episode cuts through the confusion with straightforward, practical advice from someone who truly understands both sides of the equation.

Employment attorney Abbe Feitelberg returns to share her unique perspective as both an IBD patient and legal expert. She breaks down the Family Medical Leave Act (FMLA) and Americans with Disabilities Act (ADA) in clear, accessible terms that empower you to advocate for yourself in any workplace situation. From understanding which companies must comply with these laws to learning exactly what paperwork you need, Abbe demystifies the process of securing your workplace rights.

The conversation explores common misconceptions, like believing managers need detailed medical information (they don't!) or that requesting accommodations might hurt your career (it shouldn't!). You'll discover practical strategies for maintaining privacy while getting the support you need, whether that's intermittent leave for treatments, flexible scheduling during flares, or immediate bathroom access. Most importantly, you'll learn how to document everything properly to protect yourself if issues arise.

What makes this episode particularly valuable is how it addresses real-world scenarios: When should you disclose your condition? What happens if your accommodation request is denied? How do you balance transparency with privacy? As Abbe points out, "These protections exist to help you succeed—never be afraid to ask for what you need." Whether you're currently employed, job hunting, or supporting someone with IBD, this episode provides crucial knowledge to navigate workplace challenges with confidence and dignity.

Links: 

• Abbe's first episode with us
• US Equal Employment Opportunity Commission
• Info on the Americans with Disabilities Act
• Info on the Family Medical Leave Act
• Employee and Employer resources- Crohn's & Colitis Foundation- USA

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When you're battling inflammatory bowel disease, the wounds aren't always visible. Beyond the physical symptoms lies a reality many patients face but few discuss openly – the psychological impact of medical trauma.

Dr. Christina Jagielski, clinical health psychologist at Michigan Medicine, brings her expertise to this powerful conversation about trauma-informed care in the IBD community. With surprising candor, she reveals how she discovered that approximately half of gastroenterologists avoid screening for trauma history – not because they don't care, but because they feel unprepared to respond appropriately to what patients might share.

Through Robin's emotional personal story of emergency room panic attacks and medical gaslighting, we witness firsthand how past medical experiences shape current healthcare interactions. The conversation dives deep into practical strategies for both patients and providers: how to communicate triggers without reliving trauma, why certain medical settings feel unsafe, and what small changes can make enormous differences in patient comfort.

Dr. Jagielski challenges the longstanding approach of selective trauma screening based on gender or diagnosis, advocating instead for universal trauma-informed care. "People living with IBD are so much more than their labs and test results," she reminds us, emphasizing that acknowledging patients' lived experiences is just as crucial as treating their physical symptoms.

Whether you're a patient who's experienced medical trauma, a healthcare provider seeking to create safer spaces, or someone supporting a loved one with IBD, this episode offers transformative insights into healing the hidden psychological wounds of chronic illness. Listen now to start breaking down the barriers between physical and psychological care in the IBD journey.

Links: 

• Dr. Christina Jagielski
• "Had a Traumatic Medical Experience? Don't Ignore it"- article in Psychology Today by Dr. Tiffany Taft
• Journal Article on Medical Gaslighting- Dr. Jagielski, Dr. Taft, and Dr. Fuss

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Amanda Phillips never imagined her lifelong battle with Crohn's disease would transform into a business helping other people living with chronic illnesses. But after decades of unexplained stomach pains, missed diagnoses, and learning to navigate life with IBD, that's exactly what happened.

Amanda takes us through her journey from childhood stomach aches dismissed as "just constipation" to her eventual diagnosis at 17. We explore how she learned to identify her personal flare triggers—stress and GI bugs being the major culprits—and the profound anxiety this created around situations most people take for granted, like commuting to work or being around sick family members.

The pandemic became an unexpected turning point in Amanda's health journey. Working remotely eliminated the bathroom-related stress of her daily commute. When her company pushed employees back to the office, Amanda fought for accommodations, facing frustrating resistance from HR despite documentation showing remote work improved her health and performance.

The birth of Be Well came during a February 2022 hospitalization, when Amanda found herself freezing in a standard hospital gown. Looking around at the medical wear available, she thought, "I can do better than this." 

What makes Amanda's approach unique is her commitment to meaningful design. Every Be Well product—from symptom tracking journals to discreet pill holders to comfort items with inspirational quotes—comes from lived experience and continuous customer feedback with a focus on prioritizing patient comfort, dignity, and practicality. Now she's expanding into new territory with hospital gowns, non-metal MRI hoodies, and more innovations. 

Whether you're living with chronic illness or supporting someone who is, this episode offers inspiration in turning personal challenges into purpose and creating solutions that truly understand patient needs.

Links: 

• Link to the BeWell website
• Link to BroGlo
• Information about IBD and work- Crohn's & Colitis Foundation- USA
• My guest co-host, Stacey Calabro's episode

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When your gastroenterologist is also your dad, navigating the complexities of Crohn's disease takes on a whole new dimension. Angie's powerful story reveals a journey of discovery, resilience, and unexpected insights into managing IBD through life's major transitions.

Diagnosed in 2017 following a period of intense personal stress, Angie shares her quest to understand why she developed Crohn's without family history. Her analytical approach has led to fascinating observations about potential triggers and management strategies. Most notably, she's discovered her Apple Watch provides possible early warnings of impending flares through heart rate variability changes.

The conversation takes a particularly compelling turn when Angie discusses her pregnancy experience. While initially smooth, a flare during her third trimester created significant concerns about her baby's development. She candidly shares how her medical team balanced medication adjustments with pregnancy safety, ultimately leading to the birth of her healthy son. 

Beyond medical management, Angie reveals how her experience with cold exposure seemed to help her, and how changing her relationship with exercise from aesthetic goals to gratitude for movement transformed her approach to fitness. Her perspective on finding meaning through chronic illness challenges listeners to consider how difficulties might lead to unexpected gifts – deeper connections, greater self-awareness, and opportunities to help others.

Whether you're newly diagnosed, preparing for pregnancy with IBD, or simply seeking fresh insights on managing a chronic condition, Angie's story offers valuable perspectives from someone who's navigating these waters with honesty, humor, and hope. Listen now to discover how technology, family support, and shifting perspectives can create a path forward through the challenges of inflammatory bowel disease.

Links: 

• Our episode with Natalie Hayden
• Natalie's Instagram
• Our episode with Dr. Tiffany Taft
• Our episode with Josie McGarva re: heart rate variability
• Our 2nd episode with Jose McGarva and also Stacey Collins, RD about research

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What happens when your chronic illness becomes the catalyst for global exploration and environmental advocacy? This week we talk to Nicholas Mertens! Nick was diagnosed with Crohn's disease six years ago and he's turned his health journey into a platform for investigating how climate change impacts healthcare systems worldwide.

While most college students rarely venture beyond their comfort zones, Nick has represented his university at United Nations climate conferences in Dubai and Azerbaijan, researched indigenous biodiversity in Australia, and traveled to eight countries across four continents—all while managing his Crohn's disease. The political science and environmental studies major shares his remarkable journey from diagnosis to long-term remission, revealing how these experiences shaped his understanding of global health challenges.

The conversation takes fascinating turns as Nick details the practicalities of international travel with a chronic condition. From refrigerating Humira during 40-hour journeys to navigating customs with medication documentation, his strategies are invaluable for anyone with IBD considering travel. His culinary adventures prove equally enlightening—discovering his body tolerated exotic kangaroo meat perfectly while rejecting familiar McDonald's hamburgers in foreign countries. These unexpected reactions highlight the unpredictable nature of Crohn's and the importance of flexibility when managing the condition abroad.

Nick's involvement with the Young Patients Autoimmune Research and Empowerment Alliance (YP-AREA) demonstrates his commitment to supporting other young people with chronic conditions. This growing organization creates educational resources specifically for adolescents and young adults navigating autoimmune diseases—demographics often overlooked in medical literature and research.

Listen as Nick shares his powerful perspective on remission, defining it not by lab results but by quality of life and regaining control over your condition. His parting wisdom reminds us that climate change and healthcare are "inextricably linked," and understanding these connections is crucial for anyone living with chronic illness in our rapidly changing world.

Links: 

• Young Patients Autoimmune Empowerment Alliance (YP-AREA) Instagram 
• YP- AREA YouTube- Video of the transitioning to adult care webinar they held with friend-of-the-show, Dr. Jordan Shapiro
• Traveling with prescription medications- US Customs and Border Control
• Traveling with IBD- Crohn's & Colitis Foundation USA
• IBD Passport- nonprofit with advice on traveling abroad with IBD

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This week we bring back our friend and friend of the show, Dr. Ashish S. Patel! Dr. Patel takes us on a global journey through the evolving landscape of pediatric inflammatory bowel disease treatment, revealing contrasts between approaches across continents and highlighting gaps in how new medications reach children.

While adult IBD patients have benefited from an explosion of treatment options over the last two decades, children remain limited primarily to anti-TNF biologics as their only FDA-approved options. This forces physicians to fight insurance battles for access to newer medications or enroll patients in clinical trials that come years too late. "We have to bring evaluation of these medications to pediatrics concurrently with adult populations," Dr. Patel explains, sharing how advocacy efforts aim to shift this paradigm.

The conversation takes a fascinating turn when comparing treatment philosophies worldwide. At the World Congress in Buenos Aires, nutritional therapy, probiotics, and dietary interventions dominated discussions—a striking contrast to North American conferences featuring pharmaceutical companies. This reveals how resource availability shapes medical approaches, with Latin American physicians developing expertise in nutritional interventions while North American practices focus on biologics.

Dr. Patel's most hopeful insights come from current research aiming to personalize treatment based on a patient's unique profile. Studies collecting genetic information, microbiome data, and environmental exposures may eventually allow doctors to determine the optimal intervention—whether medication, diet modification, or environmental change—for each child at diagnosis. "In the near future, at least for certain types of IBD, we're talking about something that's curative rather than just therapeutic," he shares, offering hope that we're moving beyond symptom management toward addressing root causes.

Join us for this eye-opening conversation that challenges conventional thinking about how we research, develop, and implement treatments for one of medicine's most complex childhood conditions.

Links: 

• ImproveCareNow
• North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN)

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What happens when you decide to throw caution to the wind, decline your PhD acceptance, quit your job, and travel the world for 10 months—all while managing Crohn's disease? Friend of the show and health psychologist Josie McGarva takes us along on her extraordinary global adventure, revealing both the challenges and profound joys of pursuing dreams despite having IBD.

From the medication logistics nightmare of switching from the medication she was on for a long time to one that she can more easily travel with, to having her mother smuggle medication internationally hidden inside fluffy socks, Josie's preparation for this journey was an adventure itself. With refreshing candor, she shares her experience navigating living and volunteering abroad while traveling on a tight budget of just $1,000 per month.

Josie's travels have taken her from the breathtaking mountains of Patagonia to the vibrant temples of Thailand, with meaningful stops volunteering at hostels, dog rescues, and teaching English in remote villages along the way. Through food poisoning in Thailand, 28-hour bus rides in Argentina, and confronting roosters at dawn in remote villages, Josie demonstrates remarkable resilience while never losing sight of why she embarked on this journey: "I'm finally healthy, which is why I have to go."

Beyond the travel tales lies a deeper narrative about identity and chronic illness. Having been diagnosed at 13 and sick throughout her formative years, Josie reflects on how being in remission has allowed her to question how much space IBD should occupy in her future life and career. Her powerful message resonates far beyond the IBD community: limitations are real, but with creativity, determination, and support, dreams remain within reach.

Links: 

• Our first episode with Josie
• Our Research Roundup episode with Josie and Stacey Collins, RD
• Josie's Instagram account
• Workaway- volunteer while traveling site
• The Workaway opportunity with Dani and the dog rescue
• Fundacion Animal Chile

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The quest for better outcomes in pediatric IBD has taken significant strides forward, and Dr. Jeremy Adler returns to Bowel Moments to guide us through the most promising research developments of the past year. Dr. Adler is a clinical Professor in the Division of Pediatric Gastroenterology at the University of Michigan and serves as the Interim Director of the Susan B. Meister Child Health Evaluation and Research (CHEAR) Center. 

We discuss how medication dosing strategies have evolved dramatically, with compelling evidence showing that body surface area measurements work better than traditional weight-based dosing for younger children. This seemingly simple adjustment yields dramatically better results, particularly as children grow and develop through puberty. Regular therapeutic drug monitoring—checking medication levels every 6-12 months or more frequently during growth spurts—has also proven critical for maintaining disease control in the pediatric population.

Prevention emerges as the cornerstone of Dr. Adler's research and clinical philosophy. The fascinating GEM study has identified changes in gut permeability that occur before IBD diagnosis, potentially opening doors to early intervention before symptoms appear. Meanwhile, Dr. Adler's own groundbreaking research demonstrates that early, aggressive treatment with anti-TNF medications can prevent serious complications like perianal fistulas, fistulas, and abscesses—complications that significantly impact quality of life and body image.

We navigate the complex terrain of treatment barriers, from insurance denials to psychological resistance to "stronger" medications. Dr. Adler challenges common misconceptions, noting that injectable or infusion medications often have better safety profiles than some oral options that patients perceive as "less intense." The conversation turns to normalizing surgical options like ostomies when needed, with Dr. Adler advocating for early introduction to surgical teams—not because surgery is imminent, but because establishing relationships reduces trauma if intervention becomes necessary.

With new medication mechanisms emerging and genetic markers helping to personalize treatment approaches, the research landscape offers real hope for children with IBD. Join us for this candid, informative discussion about protecting children from the worst outcomes of IBD through early intervention, personalized treatment, and collaborative care models that address both physical and mental wellbeing.

Links: 

• Research article- Preventing Fistulas and Strictures Among Children with Crohn's Disease
• Journal Article referenced- National Perspectives of Barriers by Insurance and Pharmacy Benefits Managers in Pediatric Inflammatory Bowel Disease
• ImproveCareNow

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This week Alicia and guest co-host Stacey Calabro talk to Stephanie LaFlamme! Stephanie takes us on an extraordinary journey through simultaneous health battles that would challenge anyone to their core. In late 2020, she was diagnosed with ulcerative colitis, but it wasn't until 2023 that her health challenges truly escalated. Stephanie discovered a breast lump that led to a diagnosis of triple-negative breast cancer—all while her IBD symptoms were spiraling out of control.

From multiple hospitalizations to living with an ostomy, from chemotherapy to a double mastectomy, Stephanie's story reveals the physical and emotional complexities of becoming a patient after years of working as a mental health professional. Her insights into the shame and self-blame that often accompany chronic illness offer a healing perspective.

Throughout her medical odyssey, Stephanie discovered unexpected sources of strength. Her daily journaling practice became a lifeline during her darkest moments, helping her process emotions and find her way back to herself. She shares wisdom about setting boundaries, managing energy, and practicing "unrelenting patience" with your body during recovery.

Her story reminds us that while cancer often receives significant attention and support, living with IBD can feel isolating and less understood—yet both require tremendous courage and compassion.

Join us for this deeply moving episode that will resonate with anyone navigating chronic illness, supporting a loved one through health challenges, or seeking to understand the profound ways illness can transform our relationship with ourselves.

Links: 

• Journal prompts for people living with chronic illnesses
• Another journaling tool

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Discover the cutting-edge world of inflammatory bowel disease (IBD) research and management with Dr. Charlie Lees, a leading gastroenterologist and professor at the University of Edinburgh. In this episode, Dr. Lees guides us through his groundbreaking initiatives, including the Atomic IBD series and the insightful PREDICT study. Learn how innovative predictive health tools, such as sweat sensors, are shaping the future of IBD care and how the series has become a beacon of hope and knowledge for both patients and professionals.

Dr. Lees provides a deep dive into the findings from his PREdiCCT study, including finding on how mental health testing and diet may help indicate a possible flare. He also sheds light on the role of calprotectin levels in indicating inflammation and how patients can understand these levels and how to use them to track their health. This episode also emphasizes the importance of holistic patient care by addressing psychological factors like depression and inactivity, offering actionable strategies to enhance patient well-being.

Explore technological advancements in non-invasive health monitoring, from wearable tech to smart toilets, and their potential in revolutionizing IBD management. Dr. Lees also shares insights on the successful adoption of biosimilars across Europe, highlighting their cost-effectiveness and efficacy in improving patient outcomes. This episode is a must-listen for anyone interested in the future of sustainable healthcare, as it advocates for clear communication and collaboration between healthcare providers and patients to harness the full potential of these innovations globally.

Links: 

• Dr. Lees' Substack
• Dr. Lees' YouTube Channel
• Dr. Lees' patient video on Fecal Calprotectin
• Dr. Lees' video on biosimilars

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Imagine navigating a life filled with complex medical diagnoses while juggling the everyday challenges of parenthood. That's the reality for our guest, Tish, the insightful creator of Luminous Wounds. Her journey with Crohn's disease, endometriosis, and other autoimmune conditions is not just a story of survival but a testament to resilience and advocacy. Tish shares her experiences of battling medical gaslighting and the importance of finding compassionate healthcare providers willing to listen. 

The path to motherhood wasn't straightforward for Tish, and she courageously shares her struggles with fertility.  Despite the heartbreak of miscarriage and the challenges of pregnancy during a pandemic, Tish now cherishes life as a mother to three, including twins. Her experiences bring to light the emotional and physical trials of fertility issues, alongside a narrative of hope and triumph over adversity with complications like hyperemesis gravidarum.

Yet, through all these trials, Tish emphasizes the significance of advocacy, trusting one's instincts, and the power of sharing stories. Her creation of Luminous Wounds is a beacon for those facing chronic health challenges, encouraging listeners to find humor amidst difficulty and the strength to speak up. Join us as we celebrate Tish’s journey and the impact of her story on the IBD community.

Links: 

• Tish's instagram account
• "Life with Crohn's and Endometriosis: An Overlap of Painful Symptoms"- article at Endometriosis Foundation of America
• Link to Mara's episode

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Join us for a fascinating conversation with Dr. Marla Dubinsky, a trailblazer in pediatric gastroenterology and a fierce advocate for people living with inflammatory bowel disease. She shares her journey from pediatric residency to becoming a leading voice in IBD care, shaping the future of treatment and advocacy. Through her work at Mount Sinai and as co-founder of Trellus Health, she’s revolutionizing patient care by integrating resilience and digital health solutions.

We dive into the intersection of medicine and entrepreneurship as Dr. Dubinsky reflects on the mentors who shaped her path and how she’s working to make innovative healthcare solutions both impactful and commercially viable. She also highlights the importance of a holistic approach, bridging physical and mental health to empower patients in their care journey.

Plus, we explore her work in women's health, particularly in IBD management during preconception and pregnancy. Through initiatives like We Care in IBD, she’s helping to create tailored programs that support women at every stage of life. Don’t miss this deep dive into precision medicine, prevention clinics, and the future of IBD .

Links: 

• Info on Trellus Health
• Innovative programs at Mount Sinai IBD Center
• A video about Dr. Dubinsky for her Jacobi Medallion award
• The book Dr. Dubinsky mentions- "Likeable Badass: How Women Get the Success They Deserve" by Dr. Alison Fragale

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This week we reflect on the journey since launching Bowel Moments in August 2021, sharing our personal updates and the lessons we've learned along the way. We reminisce about the podcast's beginnings as a concept born out of a love of podcasts and how it evolved into a heartfelt platform for the IBD community, featuring memorable interactions with guests. We open up about our own journeys, revealing more than just the polished elevator pitches we've rehearsed over the years.

As we look to the future, we discuss plans for expanding our reach, engaging diverse voices around the world, and demystifying healthcare navigation by involving nurses, physician assistants, and insurance insiders. Highlighting our dream interviews, we express our desire to feature influencers like Sunny Anderson, Mike McCready, Kim Holderness and Rachel Elizabeth Slocum, hoping they can bring fresh perspectives and humor to our discussions.

We want to keep growing our incredible community of listeners who are passionate about understanding and supporting the IBD journey. So, hit subscribe, share with those who might need a dose of inspiration or laughter, and let us know what you think by leaving a review. Your support means the world to us, and we're excited to continue sharing these meaningful conversations with you. Thank you for being part of our journey, and here's to a future of engaging stories and shared discoveries!

Links: 

• Our episode with Dr. David Rubin
• Our episode with Stacey C- The Deuce
• Our episode with Dr. Ashish Patel
• Our episode with Dr. Anish Patel
• Our Research Roundup Episode with both Drs. Patel
• Our episode with Dr. David Schwartzberg
• Our episode with Stacey Collins- One of our guest hosts! 
• Our episode with Hannah Cramer- One of our guest hosts! 
• Our episode with Derek Dodson- One of our guest hosts! 
• Our episode with Lauren Erbach Barnfield- One of our guest hosts! 

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Could your holiday season be a little less stressful and a lot more joyful? Our latest episode of Bowel Moments provides you with the tools to do just that, especially if you're navigating the festive chaos with Inflammatory Bowel Disease (IBD). We have the pleasure of welcoming back Stacey Collins, a registered dietitian and IBD specialist, who not only shares valuable professional insights but also her personal experiences in managing dietary restrictions. Together, we offer practical tips and heartfelt advice on how to enjoy holiday gatherings while keeping your health a priority. From thoughtful strategies like bringing your own dishes to gatherings to understanding the importance of choosing safe snacks, we discuss how to make this time of year not only survivable but enjoyable.

We also take a deep dive into the financial side of healthcare management, especially pertinent at the year's end. We explore how to maximize your healthcare benefits through strategic planning, whether it's scheduling medical procedures before the year closes or effectively using Health Savings Accounts (HSAs) and Flexible Spending Accounts (FSAs). Chronic conditions like IBD come with their own set of challenges and expenses, and we shed light on how these financial tools can ease the burden. With practical tips on managing these accounts, you'll discover how to make the most out of your healthcare benefits and minimize out-of-pocket expenses.

Finally, we touch on the emotional journey of living with IBD, emphasizing the importance of self-care and setting personal boundaries during the holiday season. From the relief of being able to enjoy simple pleasures, like eating fruit again, to using humor as a coping mechanism, we share personal stories and tips for thriving amidst life's challenges. As we wrap up the year, we encourage our listeners to prioritize well-being and find joy, reminding everyone to cherish the moments that truly matter. With warmth and gratitude, we toast to a healthy and joyful new year and invite you to share this episode with friends, rate, and review our show. Cheers to a wonderful year ahead!

Links: 

• Health maintenance checklists- Crohn's & Colitis Foundation- USA
• Info on HSAs & Other Tax-Favored Health Plans- IRS USA
• The Difference Between a Flexible Spending Account and a Health Savings Account- National Institutes of Health
• FSA vs. HSA: What's the Difference? - MetLife
• Eating During the Holidays- video from the Crohn's & Colitis Foundation USA
• Nutritional Therapy for IBD website

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This week we spoke to Dr. Colm Collins! Dr. Collins is an Associate Professor at the Conway Institute of Biomolecular and Biomedical Research at University College Dublin. He shares his journey from the world of pharmacology to pioneering research in inflammatory bowel disease (IBD). You'll learn about the innovative approaches his team is exploring to revolutionize treatment options for IBD patients. With a blend of humor and expertise, Dr. Collins offers a rare glimpse into the challenges and triumphs of translating scientific breakthroughs into real-world health solutions.

Our conversation unravels the intricate relationship between the immune system and gut bacteria, as Dr. Collins explains how retinoic acid and microRNAs play crucial roles in managing IBD. We delve into the promising possibilities of replacing lost proteins and the therapeutic potential of cannabinoids, exploring their implications on both the immune system and the digestive tract. Amidst the science, we tackle the ethical and legal complexities of cannabis research, particularly in adolescents, as Dr. Collins shares his experiences navigating these challenges with integrity and humor.

Join us for an enlightening discussion that balances serious scientific inquiry with light-hearted anecdotes, as Dr. Collins recounts his experiences in Colorado and discusses the future of IBD treatment. From the nuances of cannabis use in managing IBD symptoms to the exciting potential of selective human receptor-modifying peptides, this episode promises to expand your understanding and offer hope for more effective therapies on the horizon. Plus, enjoy a humorous account of altitude adaptation and its quirky effects on newcomers and the unexpected twists in cannabis research funding.

Links: 

• Journal article: Manipulation of the Endocannabinoid System in Colitis: A Comprehensive Review
• Journal article: Adherence, Safety, and Effectiveness of Medical Cannabis and Epidemiological Characteristics of the Patient Population: A Prospective Study
• Information on medical cannabis and IBD: Crohn's & Colitis Foundation- USA
• Research funding opportunities- Crohn's & Colitis Foundation- USA

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Ever wondered how someone turns a challenging health diagnosis into a source of artistic inspiration? This week we chat with Kaitlyn Niznik about her microscopic lymphocytic colitis and how is influenced her life and her art! Kaitlyn offers a unique perspective, sharing her journey from diagnosis to becoming an empowered advocate through her art. As an art teacher, Kaitlyn navigates the daily balancing act of managing her classroom and her health, all while creating meaningful art that she shares on Instagram. Discover how her experiences with colitis have ignited a passion for medical illustration and inspired her creative process.

Join us for this episode of Bowel Moments, where we explore the intersection of art and life with Kaitlyn Niznik, all wrapped up in a narrative that's as uplifting as it is insightful.

Links: 

• Kaitlyn's Instagram account- check out her beautiful art! 
• Information on Microscopic Colitis - Mayo Clinic
• Collagenous and Lymphocytic Colitis info- National Institutes of Health

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This week we welcomed back Registered Dietitian, Neha Shah! Neha joined us back in episode 42 where she was interviewed by friend of the show and IBD RD Stacey Collins. Neha specializes in IBD and other GI disorders and has both a private practice and is also part of the Colitis & Crohn's Disease Center at UCSF.  We spent this episode shedding light on the distinctive roles of enteral and parenteral nutrition in combating IBD-related malnutrition. This episode is your gateway to understanding how enteral nutrition (EN) and parenteral nutrition (PN) can transform treatment strategies.

We discuss everything there is to know about enteral nutrition, especially exclusive enteral nutrition (EEN), a potential game-changer for Crohn's disease management. Discover how EEN can stand alongside or even replace corticosteroids, offering an alternative path to remission and mucosal healing. While this approach has shown promise in pediatric cases, we delve into the more complex dynamics of adult treatment where compliance and lifestyle factors bring their own set of challenges. Neha emphasizes the pivotal role of dietitians in crafting personalized nutritional plans, ensuring that patients receive the tailored guidance they need.

From navigating the hurdles of enteral nutrition to transitioning to varied diets, this episode is packed with practical strategies and expert advice. Neha addresses common obstacles like weight fluctuations and gastrointestinal discomfort, offering solutions such as formula adjustments and the integration of partial enteral nutrition (PEN). As patients move from EEN to lifestyle-friendly diets like the Mediterranean or plant-based options, we explore how specific fibers and the Crohn's Disease Exclusion Diet (CDED) can optimize gut health. Whether you're a patient or a caregiver, this episode offers a comprehensive guide to navigating the nutritional complexities of IBD.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• South Asian IBD Alliance- Neha is on the board and super active with SAIA! 
• Nutrition and IBD info- UCSF health 
• Info on Exclusive Enteral Nutrition- Nutritional Therapy for IBD
• Info on Partial Enteral Nutrition- Nutritional Therapy for IBD
• Great overview of therapeutic diets for IBD! - Nutritional Therapy for IBD
• Diet and Nutrition Info- Crohn's & Colitis Foundation 
• Diet and Nutrition

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This week we were so excited to have a crossover episode with the host of the About IBD Podcast- Amber Tresca! We turned the tables on Amber and interviewed her about her IBD story! Amber has been living with UC for several years and underwent a 2-step J-Pouch surgery. We talked about her story thus far and how that plus her background in medical writing led her to a career of educating and advocating for the IBD community and how that prompted her to create the About IBD podcast! We discussed her medical writing career, the many projects that she's been involved like IBD Social Circle, Verywell Health and more, her work attending and writing about GI conferences, and the importance and care with which she writes about and educates the IBD community. We also discussed her advocacy work for the IBD community including being invited to share the vital patient voice during the American Gastroenterological Associations annual "Fly In" in Washington, D.C. We also talked about her podcast called About IBD! We explored why she started it, how she selects and prepares her guests, the process she uses to create the episodes, and how she prioritizes her topics. You'll also get a chance to hear us geek out about hosting podcasts and even so insider info about the process.

Amber is truly a badass and we had such a great time getting to know her better!! We can't wait for you to learn more about her in this episode and for you to hear our About IBD episode with her in the near future!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• About IBD Instagram site
• About IBD X account
• About IBD YouTube account
• Info on About IBD podcast including where to find it! 
• A video about J-Pouch surgery- Crohn's & Colitis Foundation 

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This week Alicia was joined by guest host and former guest, Hannah Cramer and they interviewed Alicia Aiello! Alicia A. is the President of Girls With Guts which is a nonprofit organization supporting and empowering women living with IBD and with ostomies. We talked to her all about her IBD journey and how that lead her to Girls With Guts. We discussed how her background in videography and visual arts helped her to bring some awareness to their work and how she eventually transitioned to become their President. We discussed some of their work including their "Butt Baskets" and their Lover Your Guts program and we spent a lot of time talking about their retreats. They host 2 retreats per year including a New Attendee or "Newbie" Retreat as well as an annual retreat that brings in come of those first-timers as well as alumnae.

We really enjoyed our conversation with Alicia and are so impressed with the work of GWG and Hannah was an amazing co-host!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• Girls With Guts website
• Info about the GWG retreats
• The presentation that Alicia gave to her class
• Alicia's personal website with more videos
• Hannah's episode
• Hannah and Robin's episode about EMDR

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**Trigger warning: This episode discusses suicidal ideation.**
This week we had so much fun getting to know Belinda Brown! Belinda is the CEO of Crohn's & Colitis New Zealand! Belinda was diagnosed with Crohn's at 26 years old and we discussed her diagnosis, her search for the right treatment, navigating the consequences of her surgeries when she was trying to conceive, and her struggle with thoughts of suicide and how she coped with these dark feelings. We also talk about how her diagnosis led her to get involved with Crohn's & Colitis New Zealand, to join their board, and to eventually lead the organization as CEO. We discussed the great work they're doing and especially their amazing camp for kids living with IBD called Camp Purple.

We know you'll love Belinda as much as we did and we can't thank her enough for sharing her passion, her truth, and her vulnerability with us and with our community.

If you or a loved one struggling with thoughts of suicide, please call or text 988.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links; 

• Crohn's & Colitis New Zealand
• Camp Purple
• Coping emotionally with IBD
• Fertility and pregnancy with IBD
• 3 Ply Take on the Rickshaw Run video 
• Information about visiting New Zealand with IBD

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This week Robin was joined by guest host, friend of the show, and IBD Dietitian, Stacey Collins! They spoke to Yi Min Teo! Yi Min is Registered Dietitian Nutritionist and owner of Herbs and Food – a virtual private practice specializing in digestive health and culturally-sensitive nutrition counseling. They talked about Yi Min growing up in Singapore and some of the cultural differences that she noted when she moved to the US and also some of the similarities. They discussed working with clients who have comorbid diagnoses with their IBD and the importance of personalizing a plan that works for all aspects of their health and circumstances. This lead to a really interesting conversation about incorporating cultural foods and traditions into diet plans and also to food accessibility and disparities. They also talked about advocacy and expanding dietitian services to even more people as well as meeting each patient where they're at to learn how to incorporate effective diet changes to each person's life circumstances. It was a really impactful discussion about food accessibility and how to make diet therapies more available to everyone living with IBD.  Listen and learn along with me with this fun and important conversation!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• Find Yi Min on Instagram 
• Yi Min's website
• Nutritional Therapy for IBD nonprofit- great info on diet therapies for IBD
• Diet, Culture, and Your Body- Crohn's & Colitis Foundation USA

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This week we spoke to Dr. Alan Moss! Dr. Moss is the Chief Scientific Officer at the Crohn's & Colitis Foundation in the US. Previously he was the Director of the Crohn’s & Colitis Program at Boston Medical Center (BMC) and Professor of Medicine at Boston University (BU). He is a clinician-scientist who is a passionate patient advocate. We talked to him about moving from Ireland to the US to pursue training in IBD. We talked to him about why he decided to switch from direct patient care to leading the scientific efforts at the Foundation. We talked to him about what plans he has for the future of research at the Foundation including shepherding in new technology such at AI. We talked to him about how they are ensuring patient data protections and equity in how technology may shape research. We discussed how the research agenda has changed from focusing solely on remission to prevention, remission and on to repair and healing past damage. Finally we discussed the new 5 year strategic plan that the Foundation has undertaken in guiding their research agenda and the process by which healthcare providers, researchers and patients helped to build this new plan.

We had such an interesting conversation with Dr. Moss and we're excited to see what he will accomplish in this new role.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• Overview of Challenges in IBD 
• Information about IBD Plexus
• Information about IBD Qorus
• Information in IBD Ventures

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This week we had such an interesting conversation with Dr. Erica Barnell. Dr. Barnell is the Co-Founder and Chief Medical and Science officer for Geneoscopy, Inc! Geneoscopy is a life-sciences start-up company that leverages eukaryotic biomarkers to non-invasively diagnose, monitor, and treat gastrointestinal disease. The idea for Geneoscopy was conceived during Dr. Barnell’s first clinical rotation while earning her MD/Ph.D. at Washington University School of Medicine in St. Louis. Specifically, Erica encountered a woman with Stage IV colorectal cancer (CRC) who had never undergone a colonoscopy, citing the inconvenience and burden of attending a traditional colonoscopy as key barriers. Dr. Barnell developed an easy non-invasive stool test to screen for colon cancer and she is now expanding it to the IBD space. She and her team are working to be able to use this RNA screening tool to allow for better prediction of treatment outcomes, disease monitoring and more. We talked to her about developing her initial test, going through the FDA approval process, and then developing a company while still finishing her MD/PhD. We also talked to her about starting a company with her brother and all of the many life changes she went through during it's initial stage as well. We discussed RNA technology and she gave us a quick lesson on it, and finally we discussed her participation in the Crohn's & Colitis Foundation's IBD Innovate Conference earlier this year and how it helped her premier her product to the IBD space and to explore possible partnerships and funding opportunities.

Robin and I are big geeks for research and innovation and this conversation with Erica was so fun.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• Article about the IBD Innovate Conference- Crohn's & Colitis Foundation- USA
• Episode of Oncology Overdrive from Healio with Dr. Barnell
• FDA Approves ColoSense test- Colorectal Cancer Alliance

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This week we talked to Nicole Kittleson! Nicole's daughter Addy was diagnosed with Crohn's disease when she was 8 years old but that diagnosis wasn't easy to get to. Addy wasn't growing or gaining weight, her eyes became dull and her hair started falling out. Nicole brought her concerns to her daughter's pediatrician but they just encouraged her to feed her more calories but Nicole knew something more was going on. When her daughter started experiencing skin inflammation and complaining about blood in her stool and Nicole finally demanded that her daughter get the tests she needed to get a definitive diagnosis of Crohn's. We talked to her about Addy's unusual and severe symptoms of a flare and their decision to use the Specific Carbohydrate diet to treat her disease for several years. We talked about the ramifications of using this diet including the cost, the time, and the impact that it had on family traditions and culture. We talked about how Nicole, Addy, and the rest of the family incorporated the SCD and these changes and needs into their daily routine and how they coped as a family. Finally we talked about how parents can also experience medical trauma as part of the process of their child having a chronic illness and about how parents can care of themselves while also caring for their child with IBD. In Nicole's case her own diagnosis of an autoimmune condition- Lupus- forced her to understand her need to care for herself as well as her family.

We had a deep and impactful conversation with our friend Nicole as well as some laughs. We know that you'll be inspired by her and her daughter Addy too.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• Nutritional Therapy for IBD- great source of info in diets and IBD
• Info on the Specific Carbohydrate Diet- Nutritional Therapy for IBD 
• Diet info from the Crohn's & Colitis Foundation- USA
• Info on Camp Oasis- camp for kids with IBD- Crohn's & Colitis Foundation USA
• Community & Support programs- Crohn's & Colitis Foundation- USA
• IBDesis- South Asian IBD Alliance's support program
• Info on Toxic Megacolon- Stanford Children's Hospital 

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This week we met Victorien Madsen! Victorien lives in The Netherlands and was diagnosed with UC after the birth of her 2nd child. We talked to her about navigating this new disease while parenting young children. Trying to find the right treatment option and finally finding the Specific Carbohydrate Diet before the internet was really even a thing. We talked to her about how she incorporated that diets into her life and her family's routine. We talked to her about modifying recipes and how she learned to create delicious foods for herself. We discussed how she started volunteering to run a support group for people with IBD who are interested in using diet to complement their treatment and finally how all of that led her to start volunteering with Nutritional Therapy for IBD.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)
Links: 

• Nutritional Therapy for IBD
• An article about Victorien and her diet journey- in Dutch! 
• Curing Food- Victorien's website- in Dutch! 
• Victorien's pecan waffle recipe
• Nutritional Therapy for IBD's Diet comparison chart

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This week we had such a great conversation with Kate Scarlata, MPH, RD! Kate is a Boston-based registered dietitian and New York Times best selling author with 30+ years of digestive health experience. Kate is a world-renowned low FODMAP diet expert and invited speaker on the role of food intolerance in GI disorders at numerous international and national gastrointestinal health conferences from Harvard Medical School to Monash University. She specializes in digestive health including treatment for: IBS, celiac disease, inflammatory bowel disease, mast cell activation syndrome and small intestinal bacterial overgrowth (SIBO).

We talked to her about so many things! We discussed patients that have co-occurring IBD and IBS- how frequent that is and how to best treat them. We talked about food intolerances, intolerance testing, and elimination diets. We discussed medical equity and her efforts to highlight the lack of medical diet-friendly- like for celiac- food offered in food pantries. We talked about common myths surrounding gut health that she asks her guests on her podcast called The Gut Health podcast to discuss. Finally we discussed her new book that she co-authored with Dr. Megan Riehl called "Mind Your Gut: The Science-Based, Whole-Body Guide to Living Well with IBD."

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

•  Kate's Blog that she mentions
• Kate and Megan's book
• Dr. Megan Riehl's episode
• Kate and Megan's podcast -The Gut Health Podcast

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This week we spoke to Rocio Castrillon- better known for her popular Instagram account @VoiceforIBD! She shared her story of being diagnosed with Crohn's disease and how a lack of information caused her to suffer in silence with fistulizing disease. We talked to her about finally getting involved with Team Challenge with the Crohn's & Colitis Foundation in the USA and how that helped her find a large community of other people living with IBD. The opened up other volunteer opportunities and so we talked to her about the many ways that she's gotten involved with the community including advocacy work, leading a Spanish-speaking support group, educational initiatives, and more. We especially discussed her support group that includes people from many parts of the world and what are some commonalities she's observed and the people she helps. Finally we talked about how all of her advocacy work and involvement led her to being nominated for the National Board of Trustees for the Crohn's &  Colitis Foundation here in the US. We  discussed how she's using this seat at the table and this platform to raise even more awareness of the needs of the Hispanic/Latino IBD  community and so much more.

We really loved getting to know Rocio more during the conversation and we know you'll appreciate all that she does for our community as well!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• Grupo de Apoyo para Adultos con EII
• Article by Rocio in Crohn's & Colitis 360
• Crohn's Disease Patient Experiences and Preferences wit Disease Monitoring: An International Qualitative Study - Crohn's & Colitis 360

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This week we had a great conversation with Mason Milne! Mason is the host of the Crohn's and Autism Awareness Advocate podcast! We talked to him about being diagnosed with Crohn's when he was 17 years old and a bit about the health system in the UK where he lives. We talked about what it's been like navigating the healthcare system with autism and advocating for his needs. Mason gave some advice for other people living with autism that may also need to communicate their specific needs or preferences to their healthcare team. We talked a lot about his podcast, the unique series that he does, and how he recruits guests- including some famous ones! And finally we discussed his love of the show Dr. Who and how attending conventions has lead to him recruiting some very cool guests to his show!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• Mason's YouTube channel
• Mason's episode with the 8th Doctor- Paul Magan
• An interview with Mason about living with Crohn's and Autism- Crohn's Colitis UK

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This week we had a great time getting to know Dr. Kim S. Beall! Kim is a Doctor of Pharmacy whose son was diagnosed with Crohn's disease when he was 13 years old. After she and her son discussed his treatment options with his healthcare team and they did some research he decided to try Exclusive Enteral Nutrition (EEN) to get his Crohn's in remission. We discussed how Kim and her family supported him during this time and how he coped with being on this very restrictive diet. Nutrition has been central to Kim's son’s management of Crohn’s disease since his diagnosis in 2013 at age thirteen. Nutritional therapy has been an essential part of providing optimal care and has afforded him the best opportunity to manage life with Crohn’s disease successfully.

After her son achieved remission, she and her husband, Anthony Beall who is a physician, realized that there really was a lack of information about dietary therapies for IBD, that many healthcare providers didn't really know where to look, and that there was a huge need for a repository of this information. So they started the nonprofit organization Nutritional Therapy for IBD in 2019 to fill an essential void in providing evidence-based knowledge, tools, and resources to empower patients and aid clinicians seeking to leverage nutrition alongside medications in inflammatory bowel disease. Their mission is to establish evidence-based nutritional therapy as a foundational part of IBD treatment to enhance the well-being and health outcomes of all children and adults with Crohn’s disease or ulcerative colitis. We empower clinicians and patients with essential, current, comprehensive, educational, and innovative resources. We talked to Kim about starting this nonprofit, some of the great tools available for patients and clinicians, the recipe database, and how her nonprofit has been received by the medical community.

We were so inspired by Kim's passion and the all of the great things that Nutritional Therapy for IBD is doing. 

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• The Diet Comparison Chart discussed in this episode- Nutritional Therapy for IBD
• Information for Healthcare Professionals- Nutritional Therapy for IBD
• Recipe Database
• Abigail Marie- The Chef with IBD's episode- volunteer with Nutritional Therapy for IBD
• Nicole Pavlin's episode- volunteer with Nutritional Therapy for IBD
• Barbara Olendski's - RD- video 
• Information on Exclusive Enteral Nutrition- Nutritional Therapy for IBD

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This week we had such a great conversation with Dr. Megan Riehl! Dr. Riehl is a GI Psychologist, Assistant Professor of Medicine and the Director of GI Behavioral Health at the University of Michigan. We talked to her about all things IBD and mental health and how she helped to establish and incorporate GI behavioral health into the IBD center at the University of Michigan. We also talked to her about her interest in innovations in digital therapeutics, how she's worked with some developers to ensure the efficacy and quality of their products, and what apps that she recommends to patients as well as providers. We talked to her about her new book! It's called "Mind Your Gut: The Science-Backed Whole-Body Guide to Living Well with IBS."  While this book is geared for people living with IBS, there is some really great information in there for people living with IBD as well and we discussed this with Dr. Riehl as well. Finally we went over some additional virtual resources that she finds helpful for patients. We really enjoyed talking with Dr. Riehl and we know you'll learn so much from her as well.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• The Gut Health Podcast- Dr. Riehl and Kate Scarlata, RD's new podcast!
• Dr. Meredith Craven's episode
• Info on the Nerva app
• Curable app for chronic pain
• Mahana IBD app
• Diaphragmatic breathing video 
• Dr. Brennan Spiegel's book- "VRx: How Virtual Therapeutics Will Revolutionize Medicine" 

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This week we talked to Abigail VanHoose- otherwise known as Abigail Marie the Check with IBD! Abigail was diagnosed with UC after a bad car accident and after she finished culinary school. Her disease journey was definitely rocky and very impacted by substandard medical care. Like may people living with IBD, she was told that "diet doesn't matter" but after dealing with multiple flares, she found the book "Breaking the Vicious Cycle that outlines the Specific Carbohydrate Diet and how it can be helpful for people with IBD. She decided to give it a try but found the recipes to be....less than exciting. She decided to put her culinary talents to work and started coming up with new recipes that followed the diet and than led her to decide to share her knowledge in her blog. We talked to her about following the SCD, how she creates the recipes, what she includes on her blog, and her favorite recipes. We also talked to her about her work with the nonprofit Nutrition Therapy for IBD and how she's been able to help them grown their recipe database, expand their social media, and much more. Finally we go on a rant about the medical system, steroids, and medical education. If you've listened to previous episodes, you know this is unsurprising. We had a great time hearing from Abigail, we know you will too and we're all set to try some of her yummy-sounding recipes. Cheers!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• Abigail's Blondie recipe
• Abigail's Coffee "Ice Cream" recipe
• Abigail's Strawberry Cupcake with Vanilla Icing recipe
• Nutrition Therapy for IBD

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This week we talk to Kim Braly, RD! Kim is a Registered Dietitian that specializes in IBD, consults on nutrition and IBD-related research studies, has expertise on IBD nutrition program development and educates practitioners on nutrition therapies for IBD. She is currently in private practice seeing adults and kids living with IBD virtually across the country. Previous to this she was part of the IBD Center at Seattle Children's Hospital where she saw patients as well as developed and participated in research studies on nutrition therapies for IBD. We talked to her about what it was like to develop these studies and how challenging it is to control for all the potential changes that can happen when participants are cooking their own foods. We talked about the Specific Carbohydrate Diet and how she talked to patients about the expectations and prepared them to take it on. We also talked about the efficacy of several diet therapies. We also discussed health and economic disparities and how these might affect the ability of some families to consider dietary therapies and the lack of insurance coverage to help. Finally we talked about the website that she developed with a woman living with Crohn's disease who was her patient at Seattle Children's called Eats for IBD. This website provides much-needed nutrition support and practical resources to those with IBD including educational sessions, support options, and delicious recipes that are friendly to dietary therapies. We had a lot of fun talking with Kim and we learned so much too! Cheers!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• Eats for IBD website
• Kim's private practice website
• ImproveCareNow
• Nutrition Therapy for IBD website
• Find an IBD-Focused Dietitian- Crohn's & Colitis Foundation- USA
• Find an IBD-Focused Dietitian- Academy of Nutrition and Dietetics - USA

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This week we had such a great conversation with Courtney Walls! Like several of our guests, Courtney had a pretty dramatic introduction to the IBD community including needing urgent surgeries, C-diff infections, fistulizing disease, and she's now living with an ostomy (happily).  We talked to her about going through all of that while also living with anxiety and how she's processing it using mental health therapies like CBT and internal family systems and going through the Employee Assistance Program through her work. Courtney also started a very successful Instagram account about her Crohn's journey called courts_crohns_corner. We talked to her about what it was like putting her story out so publicly, how different it is to be talking about her disease and her treatment decisions in real time versus sharing past history, and about how she's using her account to give support to others while also getting some herself. Finally we discussed her love to Charles Barkley and Arizona.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• What is Internal Family Systems Therapy
• What is C.Diff- Centers for Disease Control
• Understanding  C.Diff Infection- video from the American Gastro Association  
• Our episode with Courtney Robert, LCSW about EMDR 
• Our episode on what EMDR is like as a patient with friend of the show, Hannah C. 
• Learn about Team Challenge- Crohn's & Colitis Foundation USA
• Learn about living with an ostomy, finding support, and more- United Ostomy Association  

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This week we had a great conversation with Stephanie Brenner! Stephanie is a Licensed Clinical Social Worker at Chronic Illness Psychotherapy in Evanston, IL who has 13 years of experience working with clients with chronic illnesses. Through her journey as an IBD patient and clinician, she has developed a passion for helping people with health challenges live their lives to the fullest. We talked to her about how living with her IBD helped her develop a passion for being a therapist for kids and adults with chronic illnesses. We also discussed doing therapy with kids, medical hypnotherapy, medical gaslighting and how she works with people as they take on a new identity as they cope with a new diagnosis. We also discuss the guide for parents of kids with Crohn's that she wrote in coordination with Tina Aswani-Omprakash (Own Your Crohn's, SAIA, etc!). We spent a while talking about how she works with patients who may need to address challenges with healthcare providers who they need to remain connected to.  We discussed so many aspects of mental health and tapped into Steph's professional experience and brain that we'll have to bring her back to talk more about her IBD and living with an ostomy! 

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 

Links: 

• The Circle of Care Guidebook for Caregivers of Children and Adolescents Managing Crohn's Disease
• Find Camp Oasis- camp for kids with IBD- Crohn's & Colitis Foundation USA
• Resources from ImproveCareNow- for kids with IBD
• Find an IBD trained therapist- Rome GI Psych
• Episode with Dr. Meredith Craven about hypnotherapy
• Episode with Robin and Hannah Cramer about doing EMDR
• Episode with Courtney Robert, LCSW about EMDR 

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***Warning that this episode discusses eating disorders, disordered eating, and medical trauma.***  This week we spoke with Dr. Jordan Shapiro! Dr. Shapiro is a GI Hospitalist at Peak Gastroenterology Associates in Colorado as well as a private practice GI at Gentle GI in Houston, TX (starting April 1, 2024). Dr. Shapiro also is a yoga instructor and enthusiastic practitioner and so we spend quite a bit of time learning about the practice of yoga that goes beyond the body movements we're probably all familiar with and how adding yoga to your care may be beneficial. He also has expertise in working with patients with eating disorders or disordered eating as well as in trauma-informed care. We talk to him about how he approaches patient care in a empathetic way and how he works with patients who have identified trauma experiences that may impact their care. We also talk to him about how he uses this knowledge and experience to help other providers learn how to create a safe environment for people who may be struggling with trauma responses.  We really enjoyed this conversation with Dr. Shapiro and think you'll learn a lot from him as well. 

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 

Links: 

• Dr. Tiffany Taft's episode- discusses her research on medical trauma
• Yoga and Meditation video- GI Research Foundation 
• Interesting research article on medical trauma- among the authors is former guest Mara Shapiro- by the Crohn's Colitis Young Adult Network (CCYAN)
• Diet, Culture, and Your Body- Crohn's & Colitis Foundation- USA

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This week Alicia was joined by guest host and past guest, Derek Dodson! They interviewed Jordan B. McConnell! Jordan is a Air Force veteran, IT professional, father and husband who also lives with Crohn's disease! We talked to him about being diagnosed as a young teen and how his disease was presented to his family and how he was able to join the military and how that affected his ability to continue in his military career.  Jordan is also the creator and one of the hosts of the Crohn's Veteran podcast and lifestyle brand. We talked to him about creating the show, recruiting his co-hosts, and all of the amazing guests that they were able to interview as well as the community they created around the show. We also discussed coping with IBD as a male and how that may create situations where one may feel stifled in expressing needs and so much more. We had such a great conversation with Jordan and we can't wait for you to get to know him as well. 

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 

Links: 

• Jordan's instagram
• Jordan's interview with Amber Tresca at About IBD podcast
• Crohn's Veterans website

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This week we had the absolute pleasure to talk to Dr. David Binion! Dr. Binion is a physician-scientist who is also living with Crohn's disease. He is Co-Director of the IBD Center at the University of Pittsburgh School of Medicine. He was diagnosed with Crohn's when he was a teenager- before the information age and also before there were many treatment for IBD. He has devoted his career to analyzing "Big Data" to figure out how to predict disease outcomes, prognosis and flares. We talked to him about his longitudinal research, what he's learned, and how that's given him hope as an IBD patient. We talked to him about what he's seeing in reclassifying IBD into more subcategories and what that will mean for more effective treatment and also what he sees on the horizon for IBD research. 

We enjoyed getting to know Dr. Binion so much and know that you'll find this conversation as interesting and hopeful as we did!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 

Link: 

• Dr. Binion's page on winning the Sherman Prize in 2018

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This week we talked to Registered Dietitian, Amalia Karlin! Amalia experienced symptoms very similar to UC but she struggled to get a diagnosis.  Eventually her symptoms got to be so severe she had to have a colectomy and now lives with an ostomy. After that she decided that she as going to devote her career to helping other people living with ostomies to maximize their nutrition and live their best lives. We also talked to her about life with an ostomy, the healthcare system in Canada, and experiencing pregnancy with an ostomy. She has a very dramatic story but we think you'll love meeting her as much as we did

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 

Links: 

• Diet & Nutrition- United Ostomy Association
• Nutrition for Ostomy Patients - video- University of Miami
• Food reference chart for people living with ostomies- United Ostomy Association 

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Welcome to our 100th episode! This week we talked to the renowned Dr. David T. Rubin! Dr. Rubin is the Joseph B. Kirsner Professor of Medicine and a Professor of Pathology, Chief of the Section of Gastroenterology, Hepatology & Nutrition and the Co-Director of the Digestive Diseases Center at The University of Chicago Medicine. 

He also currently serves as an associate faculty member at the MacLean Center for Clinical Medical Ethics, an associate investigator at the University of Chicago Comprehensive Cancer Center and is a member of the University of Chicago Committee on Clinical Pharmacology and Pharmacogenomics. He is the chair of the National Scientific Advisory Committee of the Crohn’s & Colitis Foundation, where he also serves as a Board of Trustees member. He is the deputy chair of the Executive Committee of the International Organization for the Study of Inflammatory Bowel Disease.  In 2018, Dr. Rubin completed the Harvard T.H. Chan School of Public Health Leadership Development Course for Physicians.

Dr. Rubin is a Fellow of the American Gastroenterological Association (AGA), the American College of Gastroenterology (ACG), the American Society for Gastrointestinal Endoscopy (ASGE), the American College of Physicians (ACP), and the Royal College of Physicians (Edinburgh). He is on the Board of Trustees for the ACG. Among numerous awards and honors, Dr. Rubin was chosen by his peers as a member of Best Doctors (recognized for superior clinical ability) and America’s Top Physicians (gastroenterology). Additionally, he twice received the ACG’s Governor’s Award of Excellence in Clinical Research (2003 and 2013), and the UChicago Postgraduate Teaching Award in recognition of significant contributions for fellowship education (2006). In 2012, he received the Crohn’s & Colitis Foundation’s Rosenthal Award, a national leadership award bestowed upon a volunteer who has contributed in an indisputable way to the quality of life of patients and families. He is an Associate Editor of the journal Gastroenterology and Editor-in-Chief of the ACG On-Line Education Universe. In 2020, Dr. Rubin received the Sherman Prize for Excellence in Crohn’s and Colitis.

Dr. Rubin is an editor of a best-selling book Curbside Consultation in IBD which is now in its 3rd edition and an author or coauthor of over 500 articles on treatment and management of IBD, cancer in IBD and novel paradigms, as well as the first author of the 2019 ACG Guidelines for ulcerative colitis. His current research is in the area of novel approaches to monitoring of IBD (wearables and point of care intestinal ultrasound), prevention of progressive complications from uncontrolled inflammation, and a variety of collaborative and translational studies related to the causes of IBD and its complications. 

Episodes from some of Dr. Rubin's UChicago's team: 

• Dr. Alysse Bedell- Gastro Psychologist
• Michele Rubin, APN- JPouch surgical nurse extraordinaire
• Marita Kametas- Ostomy Specialist! 
• Dr. David Choi- IBD Pharmacist

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare

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This week we spoke to Liam Robertson! Liam was diagnosed with UC when he was a young adult but the process was lengthy and filled with times when he was not believed. We talked about what that was like to navigate the health system and his feelings on it. We discussed how he got so involved in social media, how that's helped him cope with flares and complications, and the importance of having a community around you. We also talked about the books that he's written including "More Than Meets the Eye: Living with Ulcerative Colitis" and the kids book series about Jack Jupiter who is a child living with IBD. We talked about what prompted him to write the books and the response he's gotten from people all over the world. We also discussed his job on an oil rig and what that's been like for him to be so far away from medical care with UC. And finally we spoke about him training in muay thai- what got him interested and more. Liam was so much fun to talk to! Go check out his books. 

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 

Links" 

• Liam's book- "More Than Meets the Eye: Living with Ulcerative Colitis"
• Liam's newest Jack Jupiter book- "Jack Jupiter- Reindeer Rally" 
• Find all of his books here.

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This week we spoke to Michele Rubin! Michele is an advanced practice nurse and is the Associate APN Director of the IBD Center at the University of Chicago Medicine. She specializes in surgery for IBD and has helped to create a J-Pouch specific clinic. We talked to her about surgery part of the treatment options, J-Pouches and what to expect in recovery, and how she works with patients to ensure they have the best outcomes. We also discussed the research that she's done related to IBD surgery and their efforts to try to predict a patient's response to their J-Pouch and how to treat complications. Finally we talked about how and why a surgeon may choose to hand sew instead of use surgical staples. Michele has been in the IBD space for a long time and has so much knowledge to share and she was such a joy and a light. We could have talked to her for hours. 

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 

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This week we talked to Ashley Mann! Ashley was diagnosed with Crohn's disease when she was 20 years old but she had been experiencing symptoms when she was in high school. We talked to her about what it was like being a competitive cheerleader with active disease. We talked to hear about what she describes as trying "every medication on the market" and navigating countless surgeries. We discussed her decision to move to a permanent ileostomy and how close she is to living with short-gut syndrome. We talked about how she's had to learn to manage her healthcare and advocate for herself while moving frequently because of her husband's career in the military. We also talked about what it was like to get her care in the military healthcare system and her experience with friend-of-the-show, Dr. Anish Patel. Finally we talked about the importance of making healthcare decisions that you feel are right for you even in the face of differing opinions from the people most important to you. 

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 

Links: 

• Our episode with Dr. Anish Patel
• A video about Short Bowel Syndrome- Canadian Society for Gastrointestinal Research 
• 
  

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This week we had the pleasure of talking with Bianca Hernandez! Bianca was diagnosed with Crohn's disease in 2015 and she almost immediately parlayed her diagnosis into advocacy for her community. She worked with her school system to get better access to the private bathroom at her school and rallied and inspired other students affected by IBD to advocate for this in their schools. She was selected to join the National Council of College Leaders program at the Crohn's & Colitis Foundation- USA which allowed her to lead in many other advocacy initiatives including step-therapy reform and Ally's law and to work on ensuring that educational materials developed were properly translated into Spanish. This program also introduced her to life-long friends and other inspiring young people in the IBD Community. We talked about her advocacy work and how her efforts to ask for what she needed lead her to becoming a fierce advocate for the whole IBD community. We discussed the perils of comparing your healthcare decisions and disease with other people's journeys and how to destigmatize medical decisions and to not compare yourself to others. We discussed how IBD impacts the Latinx community and ideas on how to raise awareness about IBD and colon cancer screening within these communities. Bianca was so much fun to talk to and is so inspiring. I know you'll find her passion as infectious as we did. 

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 

Links: 

• Information on the National Council on College Leaders- Crohn's & Colitis Foundation- USA 
• Crohn's & Colitis Foundation- homepage in Spanish
• Ally's Law/ Restroom Access Law- Crohn's & Colitis Foundation- USA
• Information about Step Therapy- Crohn's & Colitis Foundation -USA

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This week we had such a great conversation with Dr. David Schwartzberg! Dr. Schwartzberg is a double-board certified colorectal surgeon at Mather Hospital and Columbia specializing in IBD, pelvic floor conditions, re-operative colorectal surgeries, J-Pouch disorders, and minimally invasive surgical techniques. We talked to him about his passion for colorectal surgery and how he spends any free time he has that's not with his family researching and learning more about it. We talked to him about his drive to find a career that helped people and had a true impact on the world. We discussed his interest in J-Pouches and improving complications that may come with previous surgeries. We explored how some folks that had been diagnosed with UC to start may now have a Crohn's diagnosis post J-Pouch and also upper GI Crohn's disease. We also talked about his love of music and how he and his wife have fostered that love in his 3 boys. We also talked about many other things including the improved technology in buckets but I cut that part out.  Needless to say we laughed, we cried, we went off the rails but I promise you're getting the best part.  We don't think Dr. Schwartzberg could be more more passionate about caring for people living with IBD and their families and we can't wait for you to hear that in this conversation too.  

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 

Links: 

• Learn more about Dr. Schwartzberg in this video
• Dr. Schwartzberg explains 3-Part J-Pouch surgery in this video- Empowering Patients LLC
• Special Concerns for People with J-Pouches- UCSF Health
• When Should Chronic Pouchitis be Treated as Crohn's Disease?- Crohn's & Colitis Foundation USA 

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This week we had the pleasure of getting to know Alex Boyd! Alex was diagnosed with UC when she was 26 years old when she thought she had caught a stomach bug that had gotten very aggressive. It was only 2 weeks after her diagnosis that she was advised to have her colon removed and to start her J-Pouch surgery process. We talked to her about the dramatic way that she was introduced to our community and how she worked with her medical team to make this decision. We talk to her about the issues that she's experienced with her J-Pouch and how she's coping with that. We talked to her about how she's focused on her mental health to help with her coping skills and also how she's worked with her employer to get the accommodations that she needs to be the best employee she can be. We also spoke about how living with an illness like this can lead you to examine your life and your relationships and how that can lead you to making some big, and at times scary choices to allow you to grow and lead the life you deserve.  We really enjoyed hearing Alex's perspective and all that she's learned and we know you will too. 

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 

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This week we spoke to Adam Finkelstein! Adam was diagnosed with UC when he was just 2 years old. We talk to him about what it was like growing up with UC and dealing with it as a child. We spoke about how his experiences with the medical system prompted his interest in writing a children's book for other kids with IBD called "Up and Adam: A Patient's Experience on Winning with IBD." Also how it sparked his interest in becoming a physician and especially a surgeon. Finally we talked about Adam's experience as a Camp Oasis counselor, how he was able to share his book with all of the kids this summer, and what their reactions were and the conversations it started. Adam was a joy and we think he'll make an extremely empathetic doctor some day soon! 

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 

Links: 

• Find Adam's book on Barnes & Noble 
• Adam's episode on the About IBD podcast
• Adam's email- AdamIBDStory@gmail.com

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*** Warning: This episode discusses sexuality, sexual health and sexual trauma and may not be appropriate for all audiences.*** This week we spoke to Dr. Alyse Bedell! Dr. Bedell specializes in  psychogastroenterology and is a sexual health counselor at the University of Chicago IBD Center. She has specialized training and knowledge in how stress, anxiety and depression can affect digestive health. Dr. Bedell works with patients struggling with a range of gastrointestinal conditions, such as inflammatory bowel disease. and using her expertise to help her patients cope with their condition and improve their gastrointestinal symptoms. Dr. Bedell is able to assist patients in better understanding and managing their symptoms through a holistic approach that addresses both physical and emotional components. 

We spoke to her about sexual health and IBD including how sexuality can be affected by IBD and disease symptoms. We talked about intimacy and how people with IBD can increase their intimacy with their partners, working with people in the LGBTQI+ community, working with people who have experience sexual trauma and how to educate providers in responding empathetically to that experience, and so much more. This was such an interesting and educational conversation. 

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 
Links: 

•  AASECT- American Association of Sexuality Educators, Counselors and Therapists- find a sexual health therapist. 
• Sex and Intimacy Fact Sheet- Crohn's & Colitis Foundation- USA 
• Sex and Relationships- Crohn's & Colitis UK

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***This episode includes discussions about suicide and suicidal ideation and may not be appropriate for some people.****  This week we had a really deep conversation with our friend Derek Dodson! Derek has been living with Crohn's disease for 40 years and so we talk to him about what it was like to live with Crohn's before there were any good treatment options, what it was like being a teenager on steroids, and what is has been like to see so much scientific and treatment advances. We discussed his family history with IBD including his grandfather's "ileitis" and his daughter Maurie Jhaveri's diagnosis and how her diagnosis compelled him to get more involved in the IBD community. We talk about his strong Christian faith and how it has been a source of comfort and solace during his hardest times but also how it has changed his faith, how he prays, and how it helped him come up with his life motto of "make it count." We also talked about how living with Crohn's for so long, multiple surgeries, and all his treatments have had lasting impacts on his health in other ways including some vitamin deficiencies. Finally we discuss how Derek's IBD has affected his mental health including his coping with suicidal thoughts and some very significant hopelessness. And how his faith, his family, his community, and working with a therapist has helped him cope and reframe living with his disease. 

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 

Links: 

• National Suicide and Crisis Lifeline- If you or a loved one is struggling with suicidal thoughts, please call 988- US only
• A list of international suicide helplines
• Resources for Mental Health- Crohn's & Colitis Foundation- USA
• Find a therapist familiar with IBD- Rome Foundation 

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This week we spoke to Dr. Edward L. Barnes! Dr. Barnes is a gastroenterologist and clinical investigator dedicated to improving the care of patients with inflammatory bowel disease at the University of North Carolina School of Medicine.  Dr. Barnes is also the 2021 Sherman Emerging Leader Prize Recipient. He has a particular interest in improving outcomes for patients with inflammatory bowel disease who require a colectomy and an ileal pouch-anal anastomosis. Patients with an ileal pouch-anal anastomosis may experience significant complications after surgery, including the development of new inflammatory conditions of the pouch. Dr. Barnes has developed multiple new research strategies to identify risk profiles for those patients at greatest risk for adverse outcomes and strategies to improve the effectiveness of available therapies for pouch-related disorders. 

We talked to him about his research and work on pouch disorders. 

Links: 

• Dr. Barnes won the 2021 Sherman Emerging Leader Prize! 
• Information about J-Pouch surgery and possible complications- Crohn's & Colitis Foundation USA
• Special Concerns for People with J-Pouches- UCSF Health

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This week we talked to Myisha Malone-King! Myisha is the brains and moderator behind the Facebook group Game of Crohn's n Chronic Illness! The goal of this group is to offer support and knowledgeable information about inflammatory bowel disease and to inspire others to not be afraid or hide because of a chronic illness. We talk to her about what discussions happen on the page and how it's helped her to support and educate other people living with IBD. We discuss her diagnosis process and how her Crohn's affected her pregnancies and how that led to her considering an abortion. We talked to her about everything that she considered as she made that decision and how difficult it was knowing that her health and her life could be so incredibly impacted by it. We talked to her about the pain she experiences with her Crohn's and how difficult it was to find a doctor that would believe her and help find the right treatment plan. We talked to her about grief and the grief that goes along with living with a chronic illness. Finally, we talk about journaling and writing poetry as a way to process living with a chronic illness. We discuss Myisha's new book of poetry called "Footprints of the Soul", where you can find your copy, and she reads us one of her beautiful poems. 

This was such a great conversation and Myisha is a treasure. 

Just a warning that we discuss abortion in this episode so it may not be appropriate for all audiences. Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 

Links: 

• We reference our episode with Nicole Williams, LPC. You can find it here.
• Myisha's Twitter account
• Myisha's book- Footprints of the Soul
• Chronic Illness and Grief: The Dual Process Model of Coping with Loss- Psychology Today by Katie Willard Virant MSW, JD, LCSW- Chronically Me
• Myisha on the Patients Rising show- Medical Gaslighting and Self Advocacy

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This week we spoke to Marita Kametas, MSN, APN, FNP-BC, CMSRN, COCN! Marita is an Advanced Practice Provider Leader, IBD APN, and Ostomy Specialist in the IBD Center at the University of Chicago. We talked to her about all things ostomy! We discussed how providers can speak to patients about all of their treatment options including surgery and ostomies and how that language can really help to make patients feel more comfortable and in control. We talked about how she helps patients prepare for surgery and to deal with ostomies after surgery. We discussed the research she's doing into new ostomy technology and what she'd love to see advance in this area. We also talked about pregnancies with ostomies, complications one can have with an ostomy and so much more. It was super interesting and I think you'll learn just as much as we did. 

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 

Links: 

• United Ostomy Association of America
• A Guide to Ostomy Bag Care - includes videos! UChicago Medicine
• Ostomy Tips & Tricks- Crohn's & Colitis Foundation USA
• 5 Tips for Navigating Life With an Ostomy- Katelyn Wilson, RD- GastroGirl

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***Warning that this episode includes an open discussion about sexuality and may not be suitable for all audiences.***
This week we talked to the lovely Julia Gaspare-Pruchnicki! Julia is a medical student that was initially diagnosed with UC when she was 9 years old. She went on to have a colectomy and J-Pouch when she was 10 years old. After struggling with pouchitis and fistulas, Julia's diagnosis was changed to Crohn's disease. We talk to her about the treatments she's tried for her fistulizing disease including clinical trials with stem cells. We discussed the accommodations that she took advantage of when she was doing her undergraduate degree as well as medical school and how that has helped her having piece of mind. We talk to her about her passion for becoming a family medicine doctor and how she feels like she can use what she's learned from her Crohn's to help other people navigate their health. We discuss her mom's UC and J-Pouch and how that helped her feel like she had a partner and advocate as she navigated her disease. And finally we had a really frank conversation about how IBD and especially fistulas can affect your sex life and sexuality. We really appreciate Julia's willingness to be so open with this part of her life and her disease.  

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 

Links: 

• Sex and Relationships- Crohn's & Colitis UK
• Sexuality and IBD- video from Canadian Society of Intestinal Research
• Perianal Fistula and Crohn's - video from Mayo Clinic

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This week we spoke to IBD and Rare Disease advocate, Aaron Blocker! Aaron lives with Crohn's disease as well as an ultra-rare disease called Hypophosphatasia. We talked to him about managing both illnesses and coordinating his care. We talked to him about how he set up his very popular and informative Facebook community called Support for Crohn's & Ulcerative Colitis and how he monitors this page to keep the conversations informative, supportive, and as accurate as possible. We also talked to him about his degree in biomedical research and how he uses it to help translate complicated scientific information for the patient population and to help educate our community. Additionally this has helped him engage with the pharmaceutical and scientific community professionally to help with patient education, marketing and much more. Finally we talked to him about parenting his three very small children, including twin babies (!), while living with two chronic illnesses. 

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 
Links: 

• Support for Crohn's and Ulcerative Colitis Facebook page
• Information on Hypophosphatasia- National Organization for Rare Diseases
• Aaron's page from IBD Social Circle
• IBD Dads: What These Patient Heroes Have to Say About Fatherhood- Lights, Camera, Crohn's Blog- Natalie Hayden
• Natalie Hayden's episode 
• Fatherhood and IBD with Jordan McConnell- About IBD Podcast with Amber Tresca (Look for a BM episode with Jordan soon!) 

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This week we had such an interesting and fun conversation with Dr. Meredith Craven! Dr. Craven is a licensed health psychologist and she's the Director of GI Health Psychology in the Division of Gastroenterology and Hepatology at Stanford Health. We spent quite a bit of time talking about gut directed hypnotherapy and other brain-gut behavioral health techniques. We also had a really interesting discussion about Dr. Craven's research and work on health disparities and diversity, equity, inclusion, and justice. We also talked about her interest in and practice of yoga and how she's helped her patients use it as well as diaphragmatic breathing and mindfulness to manage their IBD.

We could have talked to Dr. Craven for hours and hours. I hope you learn as much as we did from this conversation!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)
Links: 

• A body scan meditation video with Dr. Craven
• Coping Strategies to Improve Mental Health- Crohn's & Colitis Foundation-USA
• Racial Disparities Seen in Use of IBD Medical Therapy- Gastroenterology & Endoscopy News
• How Healthcare Algorithms and AI Can Help and Harm- Johns Hopkins Bloomberg School of Public Health

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This week we brought back friend of the show and former guest, Hannah Cramer! Hannah and Robin have both been using Eye Movement Desensitization and Reprocessing (EMDR) to help them with their medical trauma.  EMDR is a psychotherapeutic technique used to help people process and recover from trauma and problematic traumatic memories that may interfere with life. They've found EMDR to be incredibly helpful and very quick to alleviate some really significant anxiety and trauma associated with their disease and with their experiences with the medical system. We discussed how the process has worked for them, what to expect if you're considering this, pros and cons to this technique, and how they've talked to others about it. It was super interesting to hear their different experiences but also so encouraging to hear how it helped them.

If you want to know more about EMDR from a therapist that uses it with IBD patients, please go back to episode 33 with Courtney Robert. If you want to hear more of Hannah's story, go back to episode 13.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• What is EMDR? - From EMDR Institute, Inc. 

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This week we had such an informative conversation with Dr. David Choi! Dr. Choi is a Specialty Clinical Pharmacist and the Associate Director of the IBD Center at UChicago. We talked to him about his role as part of the IBD care team and how he plays an important part in patient advocacy and in getting the patient the treatment they and their provider think is best. We discussed his research in pharmacist-initiated interventions and prior authorizations and in other insurance issues in patient care and what they learned from this work. We talked a lot about biologic medications and biosimilars and what patients should know about these options and about switching to one. We also discussed supplements and how your pharmacist can help you figure out what is safe for you to use or what might have medication interactions. Finally we talked to him about training new or more pharmacists to do specialty IBD care and about networking with other IBD Pharmacists through the IBD Pharmacist Network. This was such an interesting conversation and I think you'll learn as much as we did.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• Biosimilars: What You Should Know- Crohn's & Colitis Foundation- USA
• Biologics and Biosimilar Medications for Inflammatory Bowel Disease- Crohn's Colitis Canada

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This week we spoke to Nicole and Luke Pavlin! Nicole is living with Crohn's disease and Luke is her husband and care partner. We talked about the process for her to get diagnosed and the unusual birth defect she has that complicated her case. We talked about her ongoing struggles with food anxiety and medical trauma and how the GRITT- IBD program and staff have helped her cope. We talked to her about how her Dietitian and her mental health team have worked together to help her. We talked about her participation in a couple of research studies being put on by Mount Sinai including one with wearable devices.  Nicole talked about why participating in these types of studies was especially important to her as a science educator and to help her feel like she was helping others. We also talked about her volunteer role with the nonprofit Nutrition Therapy for IBD.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• Wearable Devices and IBD: Hear One Woman's Experience as a Citizen Scientist
• Mount Sinai IBD Center Innovative Programs (GRITT)
• Nutritional Therapy for IBD
• Meckel's diverticulum

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This week we talked to Nir Salomon! Nir is the Founder and Director of the Integrative Gastroenterology unit at Sheba Medical Center in Israel. He's also the Co-Founder and Head of R&D at Evinature. Nir has done research for more than a decade on neutraceuticals for the treatment of IBD. We talked to him about his training in this area, what neutraceuticals are and how they and other types of integrative medicines are used in IBD care. We talked to him about how he chose the items that he decided to research and how he developed Evinature's CurQD protocol. We discussed the clinical trials that he went through and how this protocol can be helpful to the treatment regime of IBD. Finally we talked about research in Israel and why they may be able to research things that are not as readily studied in the United State. It was a really interesting conversation! Enjoy!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

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This week we talked to Dr. Michael Dolinger! Dr. Dolinger is an Assistance Professor of Pediatric Gastroenterology at the Icahn School of Medicine and Mount Sinai Kravis Children's Hospital. Dr. Dolinger leads the Henry and Elaine Kaufman intestinal ultrasound program at the Susan and Leonard Feinstein Inflammatory Bowel Disease Center, the first of its kind in the United States. We talked to him all about intestinal ultrasound and how revolutionary it is as a noninvasive tool to monitor disease activity and treatment response. It's seriously super cool and we had such an interesting conversation with Dr. Dolinger! We also talked to him about his very personal reason for going into pediatrics and focusing on Inflammatory Bowel Disease. Dr. Doling is a joy and we loved speaking to him more than eating a pint of ice cream.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• Intestinal Ultrasound Ushers in New Era of IBD Treatment article- Mount Sinai
• Exploring uses of ultrasound in monitoring and treating IBD- Crohn's & Colitis Foundation USA
• Real Time Ultrasound of the Intestines video featuring Dr. Dolinger- Mount Sinai Health System YouTube channel

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This week we talked to Lori Plung! Lori has been living with Crohn's disease for more than 40 years and she has been living as fully and as well as possible. She's now been diagnosed with short gut syndrome and so we talk to her about what that is, what it's like, and how she uses TPN to optimize her nutrition and hydration. We also talked to her about how she came to leading a support group in partnership with UPMC and the Crohn's & Colitis Foundation and how that changed during Covid. We spoke to her about providing peer-to-peer support and the importance of community. We had such a great conversation with Lori and talked about so, so much more. I know you'll find Lori to be the ray of sunshine that we did!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• Lori gets a shout-out in Tina's episode! 
• Information on short gut/bowel syndrome- Mount Sinai Hospital
• Short Bowel Syndrome pamphlet- Crohn's & Colitis Foundation- USA
• Information on Parenteral Nutrition (TPN)- Cleveland Clinic
• Information on Lori's Support Group 

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This week we met Kishore Pardasani! Kishore was diagnosed with UC when he was in college and struggled to find the right treatment for his disease. Eventually he decided to manage his disease through a permanent ostomy. As he was learning to navigate life with an ostomy he was underwhelmed by the tool available to help him track his supplies, measure his output, and manage his ostomy. That lead him to develop an app called OstoBuddy! OstoBuddy worked well for him and so he decided he needed to offer it to others living with ostomies. He applied for the Lyfebulb challenge addressing the unmet needs of the IBD community and was selected! We hear his whole riveting story, we brainstorm ways to improve ostomy supplies, we talk about the craziest thing he did after being diagnosed with UC, and what it was like to grow up in Barbados. It was such a fun conversation!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• Press Release about OstoBuddy being selected for the Lyfebulb challenge
• Ostobuddy App website
• Osto Group
• United Ostomy Association

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This week Alicia had a guest host! She was joined by friend of the show and past guest- Lauren Erbach Barnfield and they spoke to Dr. Abdul Aziz Elkadri! Dr. Elkadri is an Assistant Professor at the Medical College of Wisconsin where he specializes in pediatric IBD. We talked to Dr. Elkadri about his personal connecting to IBD, how he inadvertently chose GI as his specialty and why he prefers treating kids. We also talked to him about receiving his medical training in Lebanon and how that created some hurdles to him practicing in the US post training. We discussed his research into genetics and into very early onset (VEO) IBD and working with little kids (and their parents). We also talked about talking to teens about weight and eating when they have IBD and the impact of societal pressure/reward on weight. Lauren and Alicia had such a good laugh with Dr. Elkadri and always appreciate his irreverent sense of humor.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• Listen to Lauren's episode! 
• Diet and Nutrition and IBD- Crohn's & Colitis Foundation- USA
• Journal Article: "Very Early Onset Inflammatory Bowel Disease: A Clinical Approach With a Focus on the Role of Genetics and Underlying Immune Deficiences"
• Article: "Practicing Medicine in the US as an international medical graduate"- American Medical Association 

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This week we spoke to Sharan K.! Sharan lives in the UK and is the creator of the Crohn's Babble Instagram account as well as the Director of Digital Engagement at the South Asian IBD Alliance! We spoke to her about getting diagnosed and navigating her Crohn's in the UK's healthcare system. We talked to her about how challenging the system could be at times being of South Asian descent because of language barriers and lack of understanding around how the diet information may translate to her family's cuisine. We talked to her about finding information and community online and how that helped her when she was living with an ostomy. We also discussed the importance of self-care and how she helped to form IBDesis- which is a Facebook group for people of South Asian descent living with IBD- and how that prompted the formation of the South Asian IBD Alliance.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• Sharan's Instagram account- Crohn's Babble
• South Asian IBD Alliance
• IBDesis Facebook Group
• Crohn's and Colitis UK

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This week we spoke to Barbara Cramer! Barbara has 2 children living with Crohn's disease. You met her daughter Hannah in episode 13 and this week you'll get to hear Barbara's side of some of Hannah's stories and experiences. Barbara's children were diagnosed at different ages- one as a teen and one has an adult- and have vastly different styles in how they cope with their disease. We talk to her about how she's handled these vastly different ways and how she's helped both of her children navigate this new world. We talked to her about leading a support group with Hannah for families affected by IBD. We discussed the helpful and not-so-helpful things that people say when you talk about having a kid with a chronic illness, were to find accurate information about IBD, and how important it is to know that you're not alone.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• Hannah's episode! 
• Ways to find support including the Power of 2 and Support groups mentioned on the show- Crohn's & Colitis Foundation- USA
• Tools to help parents of kids with IBD- ImproveCareNow

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This week we talk to Dr. Brad Pasternak! Dr. Pasternak is the Director of the Inflammatory Bowel Disease Program at Phoenix Children's Hospital. We talked to him about how his UC influenced his choice to go into pediatric gastroenterology and how he's coped with his disease. We talked to him about his medical training in Israel and the differences between the Israeli and American medical system. We talked to him about his research and how doing basic science research helped him realize how much he loves patient care and developing deep relationships with his patients and their families. Finally we discussed his volunteer project providing medical care to a small town in Mexico.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

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This week we had an entertaining conversation with Mara Shapiro! Mara was diagnosed with Crohn's disease fairly recently but has struggled with GI symptoms for quite some time. Her Crohn's was diagnosed after she was dealing with debilitating iron insufficiency. We talked to her about receiving iron infusions and how she's learned to read her labs to better know what's happening with her iron levels. We also talked to her about her chronic C Diff infections and using Fecal Microbiota Transplant to deal with it. It was quite the story and I think you'll laugh along with us when you hear it. Finally we talk to her about her other health conditions and how they've helped her become a fierce advocate for her health and to help her find community.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• Crohn's & Colitis Young Adult Network
• Generation Patient
• Information on Fecal Microbiota Transplant- Mount Sinai Hospital
• Video on how FMT works- Johns Hopkins Hospital

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This week we had quite the conversation with Beth Meals. Beth was diagnosed with UC but also with Endometriosis and POTS. We talked to her about struggling with all of these medical conditions when she was younger and growing up and about how her family dismissed and minimized her health conditions. We also talked about her trying to find the right healthcare providers who would explore these symptoms and help her get the right diagnoses and treatments. We talked to her about how this led to hear not trusting her body and how working with a dietitian has helped her to trust food and her body more. We talked to her about medical gaslighting and how she has coped with that.  We also talked to her about the importance of community and support.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links: 

• Article: "Feeling Dismissed? How to Spot 'Medical Gaslighting' and What to Do About It"- New York Times
• Pelvic Floor Dysfunction in IBD- recorded webinar on Own Your Crohn's and in partnership with the Crohn's & Colitis Foundation- USA
• Stacey Collins, M.A., RD/LDN 

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This week we brought back Dr. Bincy Abraham- Distinguished Professor and Director of the Underwood Center- Fondren IBD Program at Houston Methodist and Dr. Jami Kinnucan- Senior Associate Consultant in the Section on Gastroenterology and Hepatology at Mayo Clinic in Florida. We talked to them about their recent trip to the Digestive Disease Week conference. They mentioned the themes that noted in the conference in advances in diagnostic tools, new medications, and information on diets and IBD. We learned a lot from them and had major FOMO that we didn't get to attend DDW as well. We also may have to try to convince them that "The Bincy and Jami Show" has a nice ring to it and produce their own podcast! ;)

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)
 
Links: 

• An interesting article about the Emerald Innovations device- Outsourcing Pharma
• Emerald Innovations website
• Information about Intestinal Ultrasound- Mount Sinai IBD Center
• Article on Intestinal Ultrasound- Crohn's & Colitis Foundation- USA

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This week we spoke to Ken Carpenter! Ken is the producer and host of Athlete 1 podcast and was diagnosed with UC when he was 46 years old. Since he's been diagnosed he has had a pretty wild ride finding the right treatment and the right provider but has been so fortunate to have his wife be his partner in this process. We discussed all of the health conditions that he's faced and how his community rallied around him. We talked about his love of all things sports including coaching baseball for many years and how he managed that while also struggling with his UC. We talked to him about his life and how he eventually found his path (with help from his wife!) but about all the things in tried along the way including serving in the Army as a paratrooper! 

We had a lot of fun getting to know Ken and we definitely had some good laughs! 

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 

Links: 

• Athlete 1 podcast
• Information on Ankylosing Spondylitis- Cleveland Clinic
• Information on J-Pouch Surgery- Crohn's & Colitis Foundation USA
• Surgery in IBD and Pouchitis video- Crohn' s & Colitis Foundation USA

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This week we spoke to Amanda Dinkelman! Amanda is living with Crohn's disease but she doesn't let that stop her from being active and keeping fit. She credits getting out and moving her body with helping her  cope with her disease and has even taken on a new challenge of powerlifting! We talk to her about training after a bowel resection and being very ill, how to trust your body, and how she keeps her body fueled. We also had a long conversation about the importance of finding a healthcare provider that's your true partner in your care and that you can trust. We also discussed how to become your own healthcare advocate and how therapy and meditation can help with learning acceptance, dealing with medical trauma, and with coping skills. We covered so many things and I think this conversation surprised all of us. We had fun and were playful and we also got deep and serious. I think you'll enjoy the ride as much as we did. 

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 

Links: 

• An interesting story about an Olympic Powerlifter name Ali Zawad with Crohn's
• A video explaining resection surgery- Crohn's & Colitis UK
• Breathing Apps- Breathe2Relax and Awesome Breathing

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This week we had so much fun getting to know Natalie Hayden! You probably know her from her very popular blog- Lights, Camera, Crohn's: An Unobstructed View- and her Instagram account! Natalie is a journalist and worked as an on-air reporter for 3 different TV stations and was also the host of Wakeup Wisconsin all while coping with Crohn's disease. We talked to her about what it was like to work in such a public field while coping with her disease and figuring out the right treatment. We talked to her about when she decided to go public with her disease and to become a powerhouse patient advocate. We discussed how she uses her journalist skills to create informative and accurate stories for her blog and what it's like to engage on social media with our community. We also talked about motherhood and raising 3 small children while living with Crohn's and what it's like to navigate all the tasks associated with managing your disease like shots, appointments, ER visits and more with little ones. We also talked about tips that she has for other people who may be interested in getting active on social media as a patient advocate. We really enjoyed our time with Natalie and had so many more questions for her. If you don't follow her- do it now! You'll learn so much! 

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 

Links: 

• Information about the PIANO study- for pregnancy and IBD while using biologics
• Resources for New Moms with IBD- Article by Natalie in Everyday Health
• IBDMoms- A community by Moms with IBD, for Moms with IBD
• Chronically Jess- resource for folks with IBD

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*** Warning- This episode discusses sexuality and contains sexual content and may not be suitable for all audiences.****
This week we had a really fun conversation with Dr. Neil Nandi! Dr. Nandi is an Associate Professor and Gastroenterologist with the University of Pennsylvania. We discussed his personal connection to IBD and how that shaped his career. We also talked about his role as the Director of Patient Outreach and Advocacy for the South Asian IBD Alliance and how the got involved with that organization. We spent a lot of time talking about how IBD can affect sexuality, how he talks to his IBD patients about this, and how to provide a safe space for people in the LGBTQI+ community to discuss their sexual health. Finally we discussed a fun fact about Dr. Nandi that we found when doing some research on him and now we want his autograph! 

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 

Links: 

• South Asian IBD Alliance
• Information on sex and relationships and IBD- Crohn's & Colitis UK
• "Sex, Intimacy, and IBD" Factsheet-  Crohn's & Colitis Foundation- USA
• "Sexual Health & Ulcerative Colitis: How to Talk to Your Doctor"- Everyday Health
• The Needs of Gay and Lesbian People with IBD- Crohn's &  Colitis UK
• Dr. Nandi's fun fact! How to watch "Tie the Knot" or on YouTube

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This week we had the absolute pleasure to get to know Madhura Balasubramaniam! Madhura is a Ph.D. student in Chennai, India and she is also the Director of Patient Outreach and Advocacy for the South Asian IBD Alliance (SAIA)! She was diagnosed with Crohn's disease in 2019 after struggling with her health for many years. She and her doctor decided to utilize a feeding tube to help her manage her disease and so we talked about her choice to do this and how it was received by her family and community. We talked a lot about IBD in India- how it's viewed, the stigma attached to it, the treatment options, the health insurance system and so much more. We also talked about how she got involved with SAIA and her role on the POA committee and what it's been like to be involved with South Asian patients from around the world who are living with IBD. This was a truly fascinating conversation and Robin and I both loved Madhura. She is so incredibly passionate and committed to improving the lives of everyone with IBD and smart, funny, and a joy on top of it! 

Please keep in mind that the views expressed on this show are those of the speakers and should not be considered medical or legal advice. Please consult with the appropriate expert if you have questions or concerns. 

Links: 

• Nutritional Support and Therapy- Crohn's & Colitis Foundation USA
• Another story by Madhura about using a PEG tube for her Crohn's - Patients Engage
• Where to find info on IBDesis

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This week we talked to Robin's long-time friend, Abbe Feitelberg! Abbe is an attorney who is living with Crohn's disease. When she isn’t working, she is usually traveling, cycling, or finding time for fun no matter what that looks like. Abbe has lived with Crohn’s since the age of 17, getting through college and law school without a proper diagnosis and many difficult days. Following her diagnosis, Abbe went through multiple courses of ineffective treatment, several hospital stays, and some very scary days. But Abbe kept fighting and is proud to live each day to the fullest, truly believing that each one is crazy beautiful.

We talked to her about the Americans with Disabilities Act that provides protections for people living with chronic illnesses. We talk to her about getting through high school, college and law school without a diagnosis and therefore not having access to these protections. We talked to her about choosing a treatment that fits into her lifestyle and managing multiple chronic illnesses. I loved getting to know Abbe and hearing how she lives her lift to the fullest despite managing her illnesses. I can totally see why she and Robin have been friends for years. 

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 

Links: 

• Information on the Americans With Disabilities Act
• United Nations- Convention on the Rights of Persons with Disabilities
• US Dept. of Education- Protections for Students with Disabilities/504 plans
• ADA National Network- What are public or private college-university's responsibilities to students with disabilities?
• Weighing the new approaches to treating Crohn's and ulcerative colitis- Harvard Health Publishing 
• Megan Starshak's BM Episode! 
• Girls with Guts

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This week we had such a great conversation with Laura Manning, MPH, RDN, CDN! Laura is a registered dietitian that works with the IBD team at the Susan and Leonard Feinstein Inflammatory Bowel Disease Center at Mount Sinai Medical Center. We talked to her about her interesting and unique career before she became a dietitian and why she switched. We talked about nutrition therapy for people living with Crohn's disease and her research on scurvy and IBD. We discussed nutritional supplements and their safety and also how to introduce foods back into  your diet. We also discussed the very effective and empowering GRITT-IBD program which is a multi-disciplinary program intended to provide services and support that will help patients have improved quality of life. Finally we talked about fish. We loved our conversation and laughs with Laura this week and we know you will too! 

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 
Links: 

• Information about the GRITT-IBD Program- Mount Sinai IBD Center
• An article on Scurvy and IBD that talks about Mt. Sinai's findings- General Surgery News
• Laura and the Mt. Sinai team's Journal article- Vitamin C Deficiency in Inflammatory Bowel Disease: The Forgotten Micronutrient- Crohn's & Colitis 360
• Dietary Supplements: What You Need to Know- US National Institutes of Health Office of Dietary Supplements

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This week we talked to Tommy Hazelton! Tommy was diagnosed with UC back in the late 1990's and went through a period where his disease was not well controlled. He was working as a musician and a performer and we talked about how he was able to be up on stage while symptomatic. We talked about the unusual and intriguing things he credits as helping him into remission and to maintaining symptom remission. We  discussed his involvement in a support group and in volunteering as a counselor at Camp Oasis. We also talked about his friendship with another one of our guests -Stacey Calabro! Tommy was funny, introspective, unique, and we had a lot of fun and laughs in this episode. 

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;) 

Links: 

• Stacey Calabro's episode! 
• An interesting article on using breast milk to treat adults
• Blog- "My journey to writing music that inspires"- Crohn's Colitis UK
• A delightful song about this guy's UC- "Ulcerative Colitis: A Song"

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This week we talked to Traci Beebe! Traci is the Director of Nursing and Clinical Practice at The Permanente Medical Group and she also happens to be Robin's sister! Traci was in nursing school when Robin was diagnosed with IBD and we talked to her about what that was like. We also talked to her about her experience with pain management clinics and pain and IBD. We discussed how and why pain management is so complicated and misunderstood in IBD and what we can do to change that. We also talked about the importance of case management and involving family in chronic illness care and management. Finally we talked about what it's been like for her to experience and help Robin during some of her most challenging times with IBD. Traci is so passionate and such and advocate and it was such a JOY to get to know her during this conversation. 

Links: 

• How to Support Someone With IBD- Blog by the Crohn's & Colitis Foundation- USA
• Resources for caregivers and professionals caring for IBD patients and their families- ImproveCareNow
• Pain Management for IBD- Crohn's & Colitis Foundation- USA
• Pain and IBD- Crohn's Colitis Canada

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This week we talk to Kajal Patel! Kajal is a 3rd year medical student originally diagnosed with UC but when she started to develop fistulas, her diagnosis was changed to Crohn's. We spoke to her about advocacy and a group she co-founded on campus for medical students with chronic illness. We talked about how she copies with everything that comes with IBD and school like setting up a 504 plan when you're an adolescent and registering with your college or university's office of disability services (even if you're in remission.) We discussed developing a sense of self/identity when diagnosed with IBD at a formative age and how she used to think she "was" her diagnosis and we talked to her about choosing GI for her career. 

Links: 

• Read more about Kajal's story- Own Your Crohn's Blog
• Talking to your professors about IBD- article written by Kajal for the Crohn's & Colitis Foundation
• 12 Things I Wish I'd Known Before Going to College With A Disability or Chronic Illness- Self
• Navigating College- Crohn's & Colitis Foundation- USA

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This week we talked to Dr. Alessandro Fichera! Dr. Fichera is the Division Chief of Colorectal Surgery at Baylor University Medical Center in Dallas, Texas and the Surgery Safety and Quality Officer since July 2020. His clinical and research interest include colorectal cancer and inflammatory bowel disease. We talked to him about the different types of surgeries for IBD including robotically assisted surgery. We talked a lot about J-Pouch surgeries and optimizing outcomes for patients. We discussed how he addresses sexuality with his patients when it may be affected by a surgery. Finally we discussed his "5 R's" principle for preventing surgical recurrence and his love of the blues. 

Links: 

• Surgery for IBD- Crohn's & Colitis Canada 
• Surgery for UC- Crohn's & Colitis Foundation- USA
• Surgery for Crohn's Disease- Crohn's & Colitis Foundation- USA
• Understanding J-Pouch Surgery- Crohn's & Colitis Foundation- USA

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This week Robin had a fan girl moment while we talked to Jackie Zimmerman! Jackie is one of the founders of Girls with Guts and was one of the OG IBD bloggers with her blog called "Blood, Poop, & Tears." Robin was a big fan of her blog and got a lot of information and support from it when she was originally diagnosed. We talked to her about creating community for women with IBD, living with both UC and Multiple Sclerosis, coordinating her care, building and running a business while living with IBD and MS, advocacy and advising with pharma companies, and so much more. This conversation had us feeling so many things- I hope you enjoy it as much as we did. 

Links: 

• Jackie's Blog
• Girls with Guts
• What are the younger and elder Futharck Runes? 
• Tips on building a business while living with a chronic illness- Forbes

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This week we talked to Francesca Ferraro! Francesca was diagnosed with UC in 2019 and just had the first part of a J-Pouch surgery in January 2023. She has been absolutely loving life with her ostomy and talks a lot about the pros and cons of continuing with the next round of the J-Pouch process. She told us how her ostomy has improved her quality of life, decreased her anxiety, and has allowed her to go out and live the life she felt had been significantly compromised by her UC. We also talked about making such big decision as such a young age, the medication merry-go-round, and the emotional toll and trauma that can come with some IBD symptoms. We also talked about working with a therapist to help with the grief and trauma that can come with these diagnoses. Francesca is funny, resilient, interesting, ambitious, and so much more. I think you'll love meeting her as much as we did. 

Links: 

• Understanding J-Pouch surgery video- Crohn's & Colitis Foundation- USA
• How to Change Your Ostomy video- Ostomystory
• United Ostomy Association of America website
• Rome Foundation- Find a therapist trained in IBD- USA

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This week we had a great conversation with Dr. Jeremy Adler! Dr. Adler is the Director of the Pediatric IBD Program at CS Mott Children's Hospital at the University of Michigan. We talked to him about his research interests in quality of care improvements, health disparities and IBD, and the Covid vaccine and its effectiveness with children with IBD. We also talked to him about the medications used to treat children with IBD and his work leading the BISCUIT Study which looks at why biologic treatments are discontinued in the treatment of kids with IBD and the outcomes. We also talked to him about why he decide to go back to do even more medical school to become a pediatric IBD specialist after working as a pediatrician for many years.  We really enjoyed sharing a cup of later afternoon coffee with Dr. Adler and hope to get to talk to him again soon! 

Sincere apologies for the audio quality this week! My internet was not as great as it needed to be in the airport. Lesson learned! We appreciate your patience!! 

Links: 

• Information about IBD in Children- North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN)
• IBD Resources for Parents and Kids with IBD- ImproveCareNow (ICN)
• Youth and Parent Resources- Crohn's & Colitis Foundation- USA
• Surgery Decision Making Tool- ImproveCareNow
• Information about surgery for UC- Crohn's & Colitis Foundation- USA

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This week we had such a great conversation with Sam Reid! Sam works in digital engagement and communications for an independent, nonpartisan policy institute in Washington D.C. Her Crohn's disease has had a big impact on her career and many of the issues that she works to improve such as drug pricing and barrier to care. We had a very interesting and passionate conversation about healthcare access and affordability. We also talked about how she sought connection via social media and the blogs and articles that she's written to help other people coping with their disease. She's been published in Teen Vogue, Allure, Healthline and more. Sam had to learn how to navigate the healthcare system quickly and she's channeled that into such impactful and passionate outlets. We could have talked to Sam for so much longer and it was so hard to edit this episode down! 

Links: 

• Op Ed written by Sam for Teen Vogue- Trying to Access  Healthcare Can Feel Like a Second Job
• Op Ed written by Sam for Teen Vogue-Chronic Illnesses are Devastating the Finances of Young American Like Me
• Article by Sam for Allure- All of the Product I Use for My Crohn's Flare Ups

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This week friends of the show Stacey Collins, RD and Josie McGarva, GI Psychologist join us to recap the Crohn's & Colitis Congress. Congress is a conference for IBD HealthCare providers and researchers that's held by the American Gastroenterological Association and the Crohn's & Colitis Foundation. This conference focuses on the total care of people living with IBD from bench research to bedside and both Stacey and Josie  presented about their research and work. We talked about what they spoke on, what they learned, what left them feeling hopeful both professionally and as patients with IBD, and their thoughts on how the conference can improve and evolve. It may sound like a stuffy conversation but we had a lot of fun and laughs in this conversation with our friends. Cheers! 

Links: 

• Stacey Collins is an IBD focused dietitian- this is her private practice page
• Josie McGarva teaches yoga! If you're in Denver, you can find her classes here
• A journal article by Josie about PTS and IBD
• OutCare Health- comprehensive resource for LGBTQ+ healthcare
• Breathing Apps mentioned- Breathe2Relax and Awesome Breathing

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This week we talked to Maurie Jhaveri! Maurie was diagnosed with Crohn's when she was 11 years old but she was not stranger to Crohn's. Her dad was also diagnosed when he was 11 and so she was already a bit familiar with it but obviously had many questions as she started to navigate it herself. She found great support, education, and comfort in the Child Life Specialist at her children's hospital (shout out to Brenda Sonnier!) and that lead her to choosing to study Child Life so that she could become that same source of support for other kids affected by illness. We talked about her path to finding a good treatment, the complicated guilt than can come with living with a chronic illness, a new diagnosis she's having to navigate and co-manage with her Crohn's, and some of her unusual side effects. We also talked about how dance helped her to cope with her Crohn's and to help her connect with others when she was  younger and how she'd like to create a dance program of her own to help other kids living with chronic illness. Maurie was such a joy to talk to and we know you'll love this conversation too. 

Links: 

• Learn about Child Life
• Youth and Parent Resources regarding IBD- Crohn's & Colitis Foundation 
• Camp Oasis- Camp for kids with IBD- Crohn's & Colitis Foundation 

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This week we talked to Kelly Issokson, RD! Kelly is the Clinical Nutrition Coordinator at the F. Widjaja Foundation Inflammatory Bowel Diseases Institute at Cedars-Sinai in Los Angeles, California. Kelly provides nutrition therapy to children and adults in the IBD Institute, the Nutrition & Integrative IBD Subspecialty Clinic. She is the Course Director and Apprenticeship Director of the newly minted Cedars-Sinai Advanced Dietary IBD Education and Training (DIET) Program. Her research focus is on the nutritional optimization of surgical patients with IBD. We talked to her about this new provider training program and why it's so important. We discussed what patients can do to optimize their nutrition if they're preparing for surgery and what labs to ask for in general to get an idea of your nutrition status. We also talked about the nutrition care pathway that Kelly helped research and write for providers to track their patients nutrition status and to check for malnutrition and also her volunteer work doing advocacy on access to nutrition counseling services and medical food. 

Links: 

• Nutrition resources for healthcare providers- Crohn's & Colitis Foundation 
• Get involved with IBD advocacy- Crohn's & Colitis Foundation 
• Link to find Stacey Collins, RD- IBD specialist in private practice- friend of the show and Kelly Issokson! 

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This week we talked to Erron J. Maxey! Erron is a retired International Professional Basketball Player and now a banker. He had his first Crohn's flare when he was traveling in Columbia for his job and that started a pretty wild ride to get diagnosed and to find him best treatment options. We talked to him about what it was like to live in many different countries while coping with his disease and what it was like to train and eat to compete at an elite level with Crohn's.. We also discussed how it can seem like men are reticent about talking about their health issues and especially their mental health. We also talked about this volunteer activities with The Color of Crohn's and Chronic Illness (Aka COCCI).  It was so fun to talk to Erron and we just scratched the surface! Enjoy! 

Links: 

•  Video featuring Erron that discusses fistulas- COCCI
• An article with tips on International travel with IBD- Medical News Today
• Traveling with IBD- Crohn's & Colitis Foundation 
• IBD Passport- Travel Advice for IBD
• The Foul Bowel: 101 Ways to Survive and Thrive with Crohn's Disease by John Bradley- Erron recommended this book but we had to cut that part. :(

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This week we had the pleasure of talking to corporate executive, wife, mother, nonprofit board member, support group leader, author, and all around badass Christine Rich. And boy did we go all in on this conversation! We talked about mental health, body image, eating disorders, feeling safe or unsafe in your body, and so much more. We talked a lot about her book "Chronic" and how it was a very raw and important look at living with a chronic illness and hearing Christine's story. 

Links: 

• Link to Christine's book "Chronic"
• Find community and support- Crohn's & Colitis Foundation 
• Find a mental health provider trained in GI health- Rome Foundation 
• National Eating Disorder Helpline
• Information on eating disorders and IBD- The Emily Program
• A blog on disorder eating from our friend- Dietitian Stacey Collins! - Lights Camera Crohn's blog

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We're ringing in the new year with a great episode! This week we talk to Dr. Bhaskar Gurram! Dr. Gurram is a pediatric gastroenterologist specializing in IBD at Children's Medical Center Dallas and UT Southwestern. We talked to him about the genetics of IBD and what we know about it from the current research. We discussed Fecal Microbiota Transplant (FMT) and it's role in treating C.Diff. We also discussed C.Diff in general and how to treat it as well as general health maintenance for people living with IBD (especially kids). Finally we talk about the language that's used in IBD care and how medical professionals can ensure that they're using patient-first language to help patients feel more successful and as truly part of the decision making process. 

Dr. Gurram is a treasure and we so enjoyed our conversation with him! Enjoy! 

Links: 

• What is FMT? - Mount Sinai GI Department
• Health Maintenance Checklist for Kids with IBD- Crohn's & Colitis Foundation 
• Lots of resources for families with kids with IBD- GIKids

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We had the pleasure of getting to know Dani Edelstein in this episode! We talked to her about being diagnosed when she was only 8 years old and what it was like for her as the child of a doctor to have to navigate the medical system on her own when she got to be an adult. We discussed how the language used around IBD care can create difficulty for folks living with it- for instance when healthcare providers say that a patient has "failed" their medication. Dani talks about how that lead to patients feeling responsibility and even shame for their disease. We talked about the importance of mental health care, the differences between a loop and an end ileostomy, and so much more. 

Links: 

• What is an ostomy? - United Ostomy Association
• Really informative video about different types of stomas- Zero to Finals YouTube channel
• Many toolkits for children living with IBD and their parents including transferring care to an adult GI- ImproveCareNow

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This week we caught up with our friend Lauren Erbach Barnfield! We've both known Lauren for several years but have never heard her full IBD story so it was really great to hear it all. We talked about her participation in the PIANO study which is a study about women living with IBD and taking biologics while pregnant and what all that entailed. We talked to her about finding the right treatment for her Crohn's and who choosing a biologic is intimidating especially when you can find so many negative stories on the internet. We also discussed talking to her small children about IBD, her going graduate school while living with Crohn's, having a full-time job AND a family, and about blogging about her Crohn's when she was younger. We also spent quite a bit of time talking about the importance of sharing your IBD story- even the mundane and seemingly normal parts- to help other people better understand what it's like to live with a chronic illness. And we talked a lot about the health insurance system in the US and how challenging it is to people with chronic illnesses. 

Links: 

• A blog about the PIANO study- Natalie Hayden for the Crohn's & Colitis Foundation 
• A factsheet about Pregnancy and IBD- Crohn' s & Colitis Foundation 
• The book Lauren references is Trick Mirror: Reflections on Self-Delusion by Jia Tolentino
• Tips for talking to your kids about your IBD- Crohn's Colitis UK
• Alicia's drink recipe- Orange Lemon Gin Cooler 

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This week we really enjoyed hearing Will Awve's story! We talked about his diagnosis with UC in college and how that affected his college experience. We discussed him trying basically all medication options to try to control his UC, his bouts with C. Diff,  and then his eventual decision to go through J-Pouch surgery. We also had a chance to talk about how your mental health and how you mentally position your disease affects your attitude and resilience. And finally we talk about how UC can create some interesting, uncomfortable, and possibly even dangerous situations when out in the wilderness. 

Links: 

• Take Action on access to medical nutrition- Crohn's & Colitis Foundation
• A blog about hiking and camping with IBD- Girls with Guts
• An interesting blog with tips about hiking with UC- **this blogger is not known to us- any advice and information is the author's. :)

Interested in being a guest? Email Robin at robin@bowelmomentspod.com or Alicia at alicia@bowelmomentspod.com or both! Cheers!

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This week we had such a great conversation with Joshua Samudre! Joshua is a medical student living with UC and so we talked to him about what it's like to study medicine while also a consumer of medicine. We talked to him about moving across the country and reestablishing yourself and your care. We talked to him about advocacy volunteer and volunteering at Camp Oasis and we had some good laughs about bidets, how mean kids can be, getting old and technology, and his unusual "fun fact" that he shared with us. Also- lots of shout outs to Grady Stewart! Be sure to check out his episode too! 

Links: 

• Advocacy volunteer opportunities- Crohn's & Colitis Foundation
• Camp Oasis- Crohn's & Colitis Foundation 
• Grady Stewart's Bowel Moments Episode

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Welcome to our second Research Roundup episode! We brought back Dr. Sunanda Kane- Professor of Medicine at Mayo Clinic and Dr. Lukasz Kwapisz- Assistant Professor of Medicine at Baylor College of Medicine to talk to us about the latest in what's happening in IBD research. We talked about new medications, biosimilars, diet research, and more. 

Links: 

• Mayo Clinic on Crohn's Disease & Ulcerative Colitis: Strategies to Manage IBD and Take Charge of Your Life- Dr. Kane's new book! 
• Diet and Nutrition Research Updates- Crohn's & Colitis Foundation 

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This week we had a great chat with Dr. Sabina Ali! Dr. Ali is a pediatric gastroenterologist and the  medical director of the Inflammatory Bowel Disease Program at UCSF Benioff Children's Hospital Oakland. She also happens to be living with IBD herself. We talked to her about her special interest in quality of care research and involvement with ImproveCareNow. We also discussed caring for very young children with IBD, the importance of having a great care team, diets and IBD, and her involvement with the South Asian IBD Alliance. 

Links: 

• Information for Parents, Kids, and Teens- Crohn's & Colitis Foundation 
• Support Groups for Parents, Kids, and Teens- Crohn's & Colitis Foundation 
• ImproveCareNow
• Diet and Nutrition- ImproveCareNow

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