#36 Living With IBD: Real Patient Stories, Procedures, Prep & The Future of Inflammatory Bowel Disease Care

Send us Fan MailIn this candid episode of Wrestling the Octopus: The IBD Patient Podcast, Rachel and Nigel dive deep into the lived reality of IBD (inflammatory bowel disease) - from emergency symptoms to complex procedures, new medications, bowel prep dilemmas and the importance of patient‑centred care.Nigel’s Recent Medical RollercoasterNigel recounts a frightening episode of passing blood while urinating - which led to A&E, scans, and ultimately a cystoscopy. He also discusses:Kidney stonesAn enlarged prostateAn upcoming OGD with ultrasound to assess his pancreasOngoing issues with low platelets and splenomegalyThis segment highlights how Crohn’s disease and long‑term treatment can intersect with other health conditions, complicating the picture of gut health and overall wellbeing.Rachel’s Treatment UpdateRachel prepares to start ustekinumab (a biosimilar: Wezenla) for Crohn’s disease:She also discusses:Pre‑biologic screening The value of regular contact with IBD nursesHow patient experience varies widely across the UKThe Great Bowel Prep DebateListeners wrote in asking about split‑dose bowel prep—especially when the second dose must be taken hours before an early‑morning colonoscopy.Rachel and Nigel share their own strategies:Nigel: would take the second dose the night before (but stresses this is personal, not medical advice)Rachel: prefers setting an early alarm to avoid bowel prep “activating” on the trainThey also reflect on how bowel prep is often worse than the colonoscopy itself:.The Power—and Pitfalls—of Patient CommunitiesRachel and Nigel explore what they see in online IBD groups:Anxiety around colonoscopiesMedication experiencesSurgery recoveryDifficulty accessing consultantsThe value of peer supportWe also discuss how digital tools like MyChart can both empower and overwhelm patients.Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid