Wrestling the Octopus (IBD)

Rachel (@bottomlineibd) and Nigel (@crohnoid)

Two long-term IBD patients, Rachel and Nigel, share their experiences and perspectives on living with inflammatory bowel disease (Crohn's disease and ulcerative colitis).

  1. Jul 30

    #38 From Birkenhead to Philadelphia: an update on Rob's IBD story, a year after his surgery

    Send us Fan Mail Crohn's patient, Rob returns to speak with us on Wrestling the Octopus: the IBD patient podcast, 12 months after his terminal ileum surgery. He shares an honest, detailed account of the physical and emotional journey of recovery, the realities of adapting to life after surgery, and the milestones that helped him regain confidence and freedom. He talks openly about pain, fear, hypervigilance, bile acid malabsorption, diet changes, medication decisions, stress and the importance of realistic expectations. He also shares the joyful moments that mark his return to normal life, from eating pizza again to weekly pancake dates with his daughter. 🧩 Key themes Crohn’s disease recovery and adaptationIBD surgery expectations and mental loadInflammatory bowel disease and long‑term managementUlcerative colitis parallels in surgical recoveryGut health after ileal resectionPatient care and communication with healthcare teams🩺 What Rob shares about the first year after surgery 1. The early weeks: pain, exhaustion and slow progress Rob describes the first two weeks as physically tough, with significant incision pain, low energy and limited movement. He emphasises that “recovered” means different things at different stages, and that early recovery is rarely straightforward. 2. Diet changes and gut adaptation For the first couple of months, Rob followed a low fibre, slow‑cooked diet to reduce strain on the bowel. He later learned that much of his urgency and loose stools were linked to bile acid malabsorption and the body adjusting to the loss of the terminal ileum. 3. The mental side of IBD recovery Rob speaks candidly about hypervigilance, fear of recurrence and overanalysing every symptom. Regular stool tests and clear communication with his gastroenterologist helped him stay grounded. 4. The twelve‑month milestone At one year post‑op, Rob feels about ninety per cent back to normal. He still experiences occasional urgency and discomfort, but the disease no longer dictates his life. 💬 Important insights from the conversation Recovery is not linear A bad bowel day does not mean the surgery has failed or that Crohn’s has returned. Comparison is unhelpful Every patient’s body, disease pattern and surgical experience is different. Stay connected to your healthcare team Rob stresses the importance of asking for help, especially in the early months. Medication discipline matters He encourages listeners not to abandon treatment after surgery, even when feeling well. Stress affects gut symptoms Rob describes how stressful life events triggered functional symptoms that mimicked flare‑ups. 🧪 Bile acid malabsorption Rob and Nigel discuss bile acid malabsorption, a common issue after terminal ileum removal. Nigel shares his experience with colesevelam, while Rob describes it as “Crohn’s lite” or “a hint of Crohn’s”, far preferable to active disease. Listeners interested in this topic can revisit episode 15 for a deeper dive. 💉 Medication and monitoring Rob is currently on Tremfya after other biologics were unsuccessful. He highlights the value of: regular stool testssix‑month colonoscopiesongoing communication with his gastroenterologiststaying on treatment even when feeling wellHis recent colonoscopy showed no inflammation and excellent healing. 🍽 Life after surgery: food, freedom and joy Rob shares the moment his surgeon told him he could “do whatever you like”, which led to a celebratory pizza and ice cream. He now enjoys: beer and wineweekly homemade curriesMexican foodrunning and gym workoutsnormal social life without toilet anxietyThese moments represent major quality‑of‑life milestones for many people living with Crohn’s disease or ulcerative colitis. 🧠 Stress, mindset and emotional resilience Rob explains how stress from family health issues and starting a new business affected his gut. He uses walking, reading outdoors and mindful routines to stay grounded. He encourages listeners to find their own de‑stress strategies and avoid getting stuck in cycles of worry. 🏥 Surgery fears and decision‑making Rob contrasts his own readiness for surgery with Nigel’s earlier fear. For Rob, repeated blockages and NG tubes made surgery feel like a relief rather than a threat. He emphasises that understanding the prognosis helped him feel empowered. 🌈 Looking ahead Rob and his wife are opening WonderHouse, a children’s soft play and café in Pennsylvania. He reflects on how impossible this would have been before surgery and celebrates the return of normal family life. 🎧 Suggested follow‑up episodes Bile acid malabsorption – Episode 15IBS vs IBD functional symptoms – Episode 37Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

  2. Jul 2

    #37 Understanding IBS in IBD - with Professor Peter Irving

    Send us Fan Mail In our latest episode of Wrestling the Octopus: the IBD Patient Podcast, Nigel and I chat with Professor Peter Irving, IBD consultant at Guy’s & St Thomas’ Hospital in London, about the confusing but incredibly common overlap between irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD). We were keen to record this episode as many IBD patients have an IBS overlap - and it can be devilishly hard to know if you're having an IBD flare or if it's IBS. Professor Irving shares some great tips on this. What IBS Really Is Professor Irving tells us that IBS is “a disorder of the interaction between the gut and the brain” and requires abdominal pain plus changes in stool form or frequency. It’s now classed as a disorder of gut–brain interaction, not a “functional” problem - a term that often leaves patients feeling dismissed. Why IBS Is More Common in IBD About 30–40% of people with Crohn's disease or ulcerative colitis experience IBS‑type symptoms. Reasons include: 🔥 Post‑inflammatory sensitivity - like post‑herpetic neuralgia after shingles🌀 Altered motility🧫 Microbiome changes🧠 Psychological stress, which affects gut–brain signallingIBS vs an IBD Flare - How to Tell It’s tricky. Some clues point more toward active IBD: 🌙 Nocturnal symptoms🩸 Rectal bleeding⚖️ Weight lossOften though, objective tests are needed: 🧪 Calprotectin🖥️ Ultrasound or imaging📹 EndoscopyBile Acid Malabsorption - A Common Mimic Especially in Crohn’s disease affecting the terminal ileum. Testing options include: ☢️ SeHCAT scan 💊 Trial of bile acid sequestrantsManaging IBS Symptoms in IBD Treatment depends on symptoms and patient preference: 🌿 Antispasmodics (mebeverine, Buscopan)🍃 Peppermint oil (Colpermin)🧉 Ginger🚽 Carefully-supervised loperamide💊 Low‑dose tricyclic antidepressants for pain modulation🧘 Stress‑management and lifestyle support🥗 Dietetic input, which can be transformativeThe Low FODMAP Diet Professor Irving helped bring the low FODMAP diet from Australia to the UK. It reduces fermentable carbohydrates that trigger gas, bloating, and diarrhoea, and can be useful in helping IBD patients to manage their IBS. It’s not meant to be long‑term - it’s a structured tool that helps patients regain control over gut health. A Final Thought IBS in the context of IBD is real, common and complex. With the right tests, the right conversations, and the right tools - from diet to medication to lifestyle - patients can feel heard, supported and empowered. Professor Irving also has an IBD podcast of his own - called Digesting - alongside a set of international IBD experts at the BRIDGe Group. Listen here. Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

  3. Jun 14

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

    Send us Fan Mail In 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 Rollercoaster Nigel 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 Update Rachel 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 Debate Listeners 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 Communities Rachel 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 @bottomlineibd Follow Nigel at @crohnoid

  4. Apr 11

    #32 How to find resilience in chronic illness: IBD and cancer patient, Neil Barker shares his story

    Send us Fan Mail In Episode 32 of Wrestling the Octopus: The IBD Patient Podcast, we meet Crohn's disease patient, Neil Barker. Neil recounts his history of living with IBD, bowel and brain cancer. His story offers an honest, deeply human look at what it means to manage a chronic illness while trying to maintain hope, identity and everyday life. Neil reflects on the early signs of Crohn's, the long road to diagnosis, and the emotional and physical toll of living with unpredictable symptoms. He shares how IBD shaped his relationship with food, work and social life, and how he learned to advocate for himself within the healthcare system. Hear Neil's practical insights on managing gut health, coping with flare ups and finding support. Our discussion then moves into Neil’s experience with bowel cancer, including how his IBD history influenced detection, treatment and recovery. He speaks candidly about the shock of later developing brain cancer, the resilience required to face multiple life altering diagnoses, and the importance of community when navigating long-term illness. Whether you live with inflammatory bowel disease, support someone who does, or want to better understand the complexities of Crohn's, ulcerative colitis and cancer, this episode offers compassion, clarity and connection. Follow Neil on Instagram @bigwoofa_agus_siarach Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

  5. Mar 29

    #31 Understanding Blood Clots and IBD - with Professor Beverley Hunt OBE

    Send us Fan Mail Blood clots are not the first thing most people think of when they hear Crohn’s disease or ulcerative colitis - but they should be on the radar of each one of us living with inflammatory bowel disease. This episode of Wrestling the Octopus IBD dives into clots and thrombosis in inflammatory bowel disease. Our guest is Professor Beverley Hunt OBE, consultant in thrombosis and haemostasis at Guy’s and St Thomas’ Hospital in London, UK. She joins us to explain why IBD increases clot risk, what this means for our gut and overall health, and what, as Crohn's and ulcerative colitis patients, we can practically do to protect ourselves. We cover: What a blood clot actually is, and the difference between deep vein thrombosis (DVT), pulmonary embolism (PE) and more unusual clots like portal vein thrombosis (PVT) and superior mesenteric vein thrombosis (SMVT)Why people with Crohn's disease and ulcerative colitis have a higher risk of clots - including the role of inflammation, “sticky blood” and autoimmune conditionsWhen the risk of thrombosis is highest in inflammatory bowel disease: flares, hospital admissions, surgery and long periods of immobilityHow to reduce your clot risk in everyday life: movement, travel tips, smoking, weight, hormones and looking after your general gut healthWhat to ask your hospital team about clot prevention if you’re admitted or having an operationRed flag symptoms that should make you seek urgent medical helpThe impact of modern biologics and other IBD medicines on clot riskWomen’s health: contraception, HRT, iron deficiency and how to make safer choices if you live with IBDNigel also shares his experience of living with portal and mesenteric vein clots and portal hypertension from a patient perspective. This episode is for anyone with Crohn’s or ulcerative colitis who has ever wondered, “Am I at risk of a clot - and how would I even know?” Our aim is not to frighten you, but to give you clear, sensible information so you can feel more confident advocating for yourself. If you find this useful, please consider leaving a rating or review, and share it with someone else living with inflammatory bowel disease. The more people understand about clots, thrombosis and IBD, the safer our community becomes. Follow Thrombosis UK. Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

About

Two long-term IBD patients, Rachel and Nigel, share their experiences and perspectives on living with inflammatory bowel disease (Crohn's disease and ulcerative colitis).

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