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A Crohn’s diagnosis at eight can shrink a kid’s world down to fatigue, fear, and the nearest bathroom. Nicole Thornton took that same reality and built something bigger: community, advocacy, and a blueprint for how young people with IBD can lead without pretending it’s easy.

We talk through Nicole’s early health journey and the moment Camp Purple Live in New Zealand changed everything by giving her friends who truly understood Crohn’s and colitis. From there, Nicole shares how she petitioned the New Zealand Parliament at just 12 years old to improve toilet access for people with inflammatory bowel disease and other urgent health needs, and how that effort evolved into the “I Can’t Wait” campaign where busin

esses voluntarily welcome patients to use staff bathrooms. We also dig into the everyday stakes behind “bathroom access” and how stigma and public accidents can shape mental health, confidence, and relationships.

Nicole also brings a global lens from her work with the International Federation of Crohn’s and Ulcerative Colitis Associations (IFCCA) youth group, including what she’s learned about medication access, healthcare funding, and how different countries support young patients. Finally, we get into why she’s studying nursing, how small acts of care can change someone’s life, and what it takes to balance advocacy, school, work, and chronic illness without burning out.

If you care about Crohn’s disease, ulcerative colitis, chronic illness advocacy, bathroom accessibility, or patient leadership, hit subscribe, share this with a friend, and leave a rating and review so more people can find the show.

Links:

• Camp Purple Live- Crohn's & Colitis New Zealand
• IFCCA- Youth Group
• Article on Nicole's NZ parliamentary efforts
• Story on CCNZ on Nicole's trip to Brussels

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A lot of IBD news sounds like it should change your care tomorrow and then… nothing changes at your next appointment. We wanted to close that gap, so we invited back Dr. Victor Chedid and Dr. Iris Wang from Mayo Clinic in Rochester, MN for a Research Rroundup that’s honest about what’s exciting, what’s early, and what still has major caveats for real people living with Crohn’s disease and ulcerative colitis.

We dig into emerging data on GLP-1 agonists like semaglutide and tirzepatide and why several retrospective studies are turning heads with signals for fewer hospitalizations and less steroid use in IBD patients. We also get specific about the “who should not use this” question, including risks for people who are underweight or have disordered eating concerns, and why multidisciplinary support with an IBD dietitian can matter. Robin also raises a practical angle many patients care about: whether GLP-1 medications could help slow gut transit for high ostomy output or pouch output, and what makes insurance approval so challenging.

From there, we talk breakthroughs that could reshape the long game of Crohn’s care: fibrostenotic Crohn’s disease and strictures. An antifibrotic drug targeting intestinal fibroblasts is showing early promise, and we walk through what a phase 2 trial result really means, plus why it can still take years before a therapy becomes available in clinic. We also explore the surprising two-way relationship between sex hormones and the gut microbiome, what that could imply for symptom patterns, and why microbiome testing and “fix your gut” products often outrun the evidence.

We end with what makes us hopeful over the next five years: better biomarkers, precision medicine, and AI in gastroenterology, paired with a clear warning about bias and why ChatGPT-style tools can confidently generate misinformation. If you found this helpful, subscribe, leave a review, and share the episode with someone who needs a clear-eyed update on IBD research.

Links:

• Information from Mt. Sinai about GLP-1 Medications and IBD
• Preventing Fibrosis in IBD: Update on immune pathways and clinical strategies

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Your baby is bleeding, no one has a clear answer, and you’re expected to make high stakes decisions while running on zero sleep. That’s the reality Andrea Potvin lived when her daughter developed bloody stools at five months old and was ultimately diagnosed with ulcerative colitis at just 10 months old, a form often described as very early onset IBD (VEO-IBD).

We talk through the winding road to diagnosis, the crushing pace of pediatric hospital life, and what it’s like to try medication after medication while your child becomes dangerously anemic. Andrea shares how her family kept pushing for more opinions, searched for doctors with deeper IBD experience, and stayed data-driven with notebooks, symptom tracking, bloodwork, and stool tests. We also dig into diet therapy, including how they implemented the Specific Carbohydrate Diet (SCD) in a staged way and why monitoring inflammation markers like fecal calprotectin still matters when things look “better.”

Andrea also explains why they added functional and integrative care, what functional stool testing showed, and how mental health support became essential for the whole family. Then we get practical about the everyday stuff: school lunches, restaurants, birthday parties, and teaching a five-year-old how to advocate for her own food needs without feeling isolated. That journey eventually led Andrea and her husband, Nick to start Moon & Co Wellness, their wellness brand built to help other families feel less alone.

Subscribe for more real talk about IBD, share this with someone who needs hope, and leave a review so more families can find these stories.

Links:

• Moon & Co Wellness on Instagram
• Comparing and Contrasting Therapeutic Diets for IBD- GI Nutrition Foundation
• Information on VEO IBD- Children's Hospital of Philadelphia

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