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. 11h ago

    #41 Getting the most out of primary care when you have IBD

    Send us Fan Mail Welcome to Episode 41 of Wrestling the Octopus IBD. This time, we're talking primary care and inflammatory bowel disease - how to get the best from your GP when treating your IBD and how we as Crohn's disease and ulcerative colitis patients can help too. Our guest is north London GP, Dr Lindsay Samaan. She tells us how GPs can help IBD patients with everything from flare symptoms and investigations ,to vaccinations and bone health,. Our discussion highlights the importance of collaborative, patient-centred care. Topics covered The role of the GP in inflammatory bowel diseaseWhen to contact your GP, IBD team or A&EBlood tests, stool tests and faecal calprotectinVaccinations and biologic medicinesBone health and osteoporosis riskPatient portals and healthcare communicationAI in healthcare lettersPreparing for consultationsManaging mental health and other conditions alongside IBD Key takeaways Your GP can do more than you might think! GPs are often the best first point of contact when symptoms change. They can help determine whether symptoms are related to IBD or another condition and arrange many initial investigations. They also take a broader view of health, helping to manage other medical conditions, mental wellbeing and overall health needs. Investigations available in primary care Your GP can often arrange: Blood testsAnaemia and nutritional deficiency screeningFaecal calprotectin testsStool tests to rule out infectionCertain scans and investigationsDEXA scans for bone health assessment When to seek urgent help Go to A&E if you develop: Severe or rapidly worsening abdominal painAbdominal swelling or distensionFever with gastrointestinal symptomsPossible bowel obstruction symptoms such as severe cramping, not passing wind or not opening your bowels [Vaccinations matter! Patients taking biologics or immunosuppressants should discuss vaccinations with their GP practice. Vaccines mentioned include: Annual flu vaccineCOVID vaccinePneumococcal vaccine If you are unsure whether to attend a vaccination appointment when unwell, your GP practice or practice nurse can advise. Don't overlook bone health People with inflammatory bowel disease who have received repeated steroid treatment may be at increased risk of osteoporosis. Your GP can arrange DEXA scanning and provide advice on vitamin D, resistance exercise and lifestyle measures to help protect bone health. Know your baseline One of Dr Samaan's biggest tips is to understand what is normal for you: Typical bowel frequencyUsual symptomsCurrent medicationsPrevious test results and treatmentsBeing able to explain what has changed since your usual baseline helps your GP assess whether symptoms may represent an IBD flare or another gastrointestinal condition. [ Use patient portals Hospital portals can provide quick access to: Clinic lettersTest resultsAppointment detailsTreatment informationHaving this information available can be particularly useful if communication between hospital and GP systems is delayed. Final thought Good patient-centred care relies on partnership. While your specialist team manages treatments such as biologics, your GP can help with investigations, monitoring, vaccinations, mental wellbeing, bone protection and wider gut health concerns. Understanding your own condition and communicating changes clearly can help you get the most from every consultation. We vow to keep our podcast non-commercial: this means no ads and no sponsorship. If you enjoy what you hear, please pay it forward by telling other IBD patients or healthcare professionals about our podcast. Please also consider subscribing and rating us on your podcast platform. Thank you. Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

  2. 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

  3. 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

  4. 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

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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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