Send us a text

** 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

Let's get social!!
Follow us on Instagram!
Follow us on Facebook!
Follow us on Twitter!

Send us a text

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

Let's get social!!
Follow us on Instagram!
Follow us on Facebook!
Follow us on Twitter!

Send us a text

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

Let's get social!!
Follow us on Instagram!
Follow us on Facebook!
Follow us on Twitter!

Send us a text

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

Let's get social!!
Follow us on Instagram!
Follow us on Facebook!
Follow us on Twitter!

Send us a text

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

Let's get social!!
Follow us on Instagram!
Follow us on Facebook!
Follow us on Twitter!

Send us a text

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

Let's get social!!
Follow us on Instagram!
Follow us on Facebook!
Follow us on Twitter!

Send us a text

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)

Let's get social!!
Follow us on Instagram!
Follow us on Facebook!
Follow us on Twitter!