Skip to content
Sign in
Artwork for Wrestling the Octopus IBD
Health & FitnessMedicine

Wrestling the Octopus IBD

Rachel Sawyer (The Bottom Line IBD) and Nigel Horwood

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).

Play
Open in
  • 23 episodes
  • Avg 30 min
  • English

Episodes 23

NewestOldestLongest
All20Unplayed20In progress0Played0
Counted on this page — what you have heard stays on this device, so it is not something the list can be paged by.
  • September 23 · 28 min

    #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 disease When to contact your GP, IBD team or A&E Blood tests, stool tests and faecal calprotectin Vaccinations and biologic medicines Bone health and osteoporosis risk Patient portals and healthcare communication AI in healthcare letters Preparing for consultations Managing 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 tests Anaemia and nutritional deficiency screening Faecal calprotectin tests Stool tests to rule out infection Certain scans and investigations DEXA scans for bone health assessment When to seek urgent help Go to A&E if you develop: Severe or rapidly worsening abdominal pain Abdominal swelling or distension Fever with gastrointestinal symptoms Possible 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 vaccine COVID vaccine Pneumococcal 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 frequency Usual symptoms Current medications Previous test results and treatments Being 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 letters Test results Appointment details Treatment information Having 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

  • September 15 · 11 min

    #40 IBD health updates from Rachel and Nigel

    Send us Fan Mail SURVEY LINK: https://docs.google.com/forms/d/1xJHV1TuTi5SKTU11wXdzqAGcXLURU6AOrWu_L4NVbtU/edit Just a quick episode from Rachel and Nigel to give some health updates about our IBD. If you have Crohn's disease or ulcerative colitis - or care for anyone who does - please do take our survey via the link above. It will help us hugely as we plan our future set of episodes on living with inflammatory bowel disease. Thank you! Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

  • September 6 · 2 min

    #39 Help shape the future of our IBD patient podcast!

    Send us Fan Mail SURVEY LINK: https://docs.google.com/forms/d/1xJHV1TuTi5SKTU11wXdzqAGcXLURU6AOrWu_L4NVbtU/edit Now we’re 18 months into our Wrestling the Octopus IBD podcast, Nigel and I would love to canvass your opinion on what you’d like to see in future episodes. Whether you’re an IBD patient like us, a healthcare professional, pharma / charity or anyone looking after someone with Crohn’s disease or ulcerative colitis, this is your chance to chip in your two penneth! We are committed to keeping our podcast non-commercial. This means no ads, no promotions, no monetisation of any kind. It was set up to be – and will certainly remain – a voluntary endeavour from Nigel and me. The survey should take no more than five minutes, and will help us to further help our inflammatory bowel disease community. Many thanks. Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

  • July 30 · 29 min

    #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 adaptation IBD surgery expectations and mental load Inflammatory bowel disease and long‑term management Ulcerative colitis parallels in surgical recovery Gut health after ileal resection Patient 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 tests six‑month colonoscopies ongoing communication with his gastroenterologist staying on treatment even when feeling well His 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 wine weekly homemade curries Mexican food running and gym workouts normal social life without toilet anxiety These 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 15 IBS vs IBD functional symptoms – Episode 37 Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

  • July 2 · 40 min

    #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 signalling IBS vs an IBD Flare - How to Tell It’s tricky. Some clues point more toward active IBD: 🌙 Nocturnal symptoms 🩸 Rectal bleeding ⚖️ Weight loss Often though, objective tests are needed: 🧪 Calprotectin 🖥️ Ultrasound or imaging 📹 Endoscopy Bile Acid Malabsorption - A Common Mimic Especially in Crohn’s disease affecting the terminal ileum. Testing options include: ☢️ SeHCAT scan 💊 Trial of bile acid sequestrants Managing 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 transformative The 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

  • June 14 · 30 min

    #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 stones An enlarged prostate An upcoming OGD with ultrasound to assess his pancreas Ongoing issues with low platelets and splenomegaly This 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 nurses How patient experience varies widely across the UK The 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 train They 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 colonoscopies Medication experiences Surgery recovery Difficulty accessing consultants The value of peer support We also discuss how digital tools like MyChart can both empower and overwhelm patients. Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

  • May 19 · 38 min

    #35 World IBD Day 2026 - Reflecting on Our Efforts in IBD Patient Education

    Send us Fan Mail In honour of World IBD Day 2026, Nigel has curated his "best bits" from our Wrestling the Octopus: The IBD Patient Podcast over the last 12 months. If you're living with Crohn's disease or ulcerative colitis - or caring for those who do - this is a chance to catch up on some clips from our previous episodes - including surgery, living with a stoma, colorectal cancer risk in inflammatory bowel disease, blood clots, and more besides. Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

  • May 10 · 16 min

    #34 Nigel talks about the reality of managing multiple health conditions as part of his Crohn's

    Send us Fan Mail In Episode 34 of Wrestling the Octopus IBD, the tables are turned. This time, Rachel asks Nigel about his battery of recent tests and what the reality is like of managing multiple health conditions that stem from his Crohn's disease. Living with inflammatory bowel disease is a full-time job in itself, and Nigel illustrates this well in this highly relatable episode. Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

  • April 11 · 39 min

    #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

  • March 29 · 33 min

    #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 conditions When the risk of thrombosis is highest in inflammatory bowel disease: flares, hospital admissions, surgery and long periods of immobility How to reduce your clot risk in everyday life: movement, travel tips, smoking, weight, hormones and looking after your general gut health What to ask your hospital team about clot prevention if you’re admitted or having an operation Red flag symptoms that should make you seek urgent medical help The impact of modern biologics and other IBD medicines on clot risk Women’s health: contraception, HRT, iron deficiency and how to make safer choices if you live with IBD Nigel 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

  • March 14 · 45 min

    #30 Top tips for living with a stoma in Crohn's disease and ulcerative colitis (IBD)

    Send us Fan Mail For Episode 30 of Wrestling the Octopus: the IBD patient podcast, we are joined by Lead Stoma Care Nurse, Natasha Rolls at University Hospital Foundation Trust Bristol and Weston. Natasha provides brilliant tips and practical guidance for everyday life and gut health for people with Crohn's disease and ulcerative colitis. 🌟 Key themes discussed 💬 Why stomas are not a last resort Natasha explains how early conversations about stomas can reduce fear and help inflammatory bowel disease patients understand that stomas can be life changing in positive ways. “I wish I had not been so frightened of this because I now feel well.” 🏥 Emergency vs elective surgery Emergency stoma formation can be emotionally challenging. Patients often need time to process shock, adapt and grieve for the life they expected. 🧠 Psychological impact Support is vital, yet access varies. Stoma nurses provide listening, reassurance and guidance even when formal psychological services are limited. 🧩 Temporary and permanent stomas Reversal depends on healing, safety and patient choice. Many people choose to keep their stoma because their quality of life improves significantly. 🧴 Learning stoma care Confidence develops at different speeds. Some patients manage their stoma within days, others need weeks depending on recovery and emotional readiness. 🏡 Support after discharge Follow up varies across the UK. Some services offer home visits and long term support, while others are more limited. 💊 Medication changes After surgery for ulcerative colitis, some patients may no longer need previous treatments. Those with Crohn's often continue shared medical and surgical care. ⚠️ Common physical issues High output, leaks, sore skin, hernias, blockages and prolapse are discussed with reassurance that most problems are manageable with simple interventions. “There are very few things in stoma care that are an emergency.” 🍽️ Diet and gut health Early low fibre diets help ileostomy patients, but long term eating can be flexible and enjoyable. Food diaries help identify triggers for gas or disrupted sleep. 🏃 Exercise and activity Most activities, including swimming, running and even mountain climbing, are possible with a stoma once recovery is complete. ❤️ Intimacy and body image Stomas can affect confidence, but Natasha emphasises autonomy, communication and the importance of sharing at your own pace. 🛠️ Bags and accessories Stoma nurses help patients choose products based on clinical need and personal preference. Needs may change over time. 💷 Prescriptions Stoma supplies are exempt from prescription charges. Some patients may also qualify for full exemption. 🤝 Support organisations Colostomy UK, Ileostomy Association, Urostomy Association and local groups offer community, advice and peer support. Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

  • February 28 · 28 min

    #29 Understanding Liver Disease in IBD - with Dr Sree Kotha and Dr Phil Berry

    Send us Fan Mail Did you know that up to 30% of people living with inflammatory bowel disease (IBD) will have abnormal liver tests at some point? In this episode of Wrestling the Octopus IBD, Nigel and I are joined by two expert hepatologists from Guy's and St Thomas' Hospital in London to explore the link between IBD and liver disease - what causes it, what to look out for and how it's monitored. Our Guests Dr. Sreelakshmi (Sree) Kotha – Hepatology Consultant and Clinical Lead for Endoscopy, St. Thomas' Hospital, London. Dr. Phil Berry – Consultant Gastroenterologist and Hepatologist, Guy's and St. Thomas' Hospital. Special interest in medical ethics and patient safety. Co-author of PSC: Voices, Journeys and Challenges. Why Does IBD Affect the Liver? IBD - including Crohn's disease and ulcerative colitis - is an autoimmune condition, and that autoimmune activity doesn't always stay confined to the gut. Liver involvement is more common than many patients realise. The main causes of abnormal liver tests in IBD include: Fatty liver disease - linked to high BMI or long-term steroid use Medication reactions - IBD treatments such as methotrexate, azathioprine and biologics can all affect liver function Autoimmune hepatitis - where the immune system attacks liver cells Gallstones - Crohn's disease affects how the body processes bile acids, increasing the risk Primary sclerosing cholangitis (PSC) - a serious bile duct condition closely linked to IBD. Key facts about PSC: Around 70–80% of people with PSC also have IBD PSC is more common in ulcerative colitis (affecting 3–8% of patients) than in Crohn's disease (1–3%) Treating IBD, even very successfully, does not appear to slow PSC — the two conditions can progress independently of each other PSC is a lifelong condition requiring ongoing monitoring Symptoms to Watch For Early liver disease often causes no obvious symptoms, which is why routine blood tests matter. As things progress, patients may notice: Persistent fatigue and tiredness (though this can overlap with IBD symptoms) Jaundice - yellowing of the eyes or skin Fevers, chills and rigors - signs of bile duct infection Abdominal pain, particularly on the right side Gallstones and Crohn's Disease Crohn's disease carries a slightly higher risk of gallstones due to changes in how bile acids are processed in the gut. Because gallstones are common in the general population and the treatment (gallbladder removal) is the same regardless of cause, the Crohn's connection isn't always explored - but it's worth raising with your team if you have symptoms. When Should You Seek Help? Managing IBD alongside liver disease, gallstones or other complications can make it hard to know who to contact when something feels wrong. A few practical pointers: Severe abdominal pain with fever, vomiting or chills - call 111 or go to A&E Grumbling, uncertain symptoms - contact your gastroenterology team via Mentioned in This Episode PSC: Voices, Journeys and Challenges - co-authored by Dr. Sree Kotha and Dr. Phil Berry Necessary Scars - by Dr. Phil Berry, exploring how medical professionals cope with mistakes Get in Touch Have a topic you'd like us to cover? Email us at wrestlingtheoctopusibd@gmail.com All previous episodes are available wherever you listen to podcasts. Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

  • February 18 · 32 min

    #28 Wrestling the Octopus IBD is one year old! An anniversary episode of thanks and reflections

    Send us Fan Mail We can hardly believe it's been 12 whole months since we started this podcast on patients' reflections on living with inflammatory bowel disease. Happy first birthday, Wrestling the Octopus IBD! During this year, we have spoken with fellow patients and also healthcare professionals to further patient education on Crohn's disease and ulcerative colitis. We are indebted to all our guests for donating their time so generously, but also to all of you, our listeners, for your supportive comments as we bring our patient experience to the podcast airwaves. In this episode, Nigel and I reflect on our first year of podcasting - with a few conversation tangents thrown in for good measure! Hope you enjoy listening... Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

  • February 12 · 44 min

    #27 Understanding colorectal cancer risk in IBD - with Professor James East

    Send us Fan Mail The fear of developing colorectal cancer (CRC) when living with inflammatory bowel disease can weigh heavily on our minds as patients. So Nigel and I resolved to get an expert guest on the podcast who could talk us (and our patient listeners) through the risks and how we can minimise them when living with Crohn's disease or ulcerative colitis. Enter Professor James East! Prof East is a consultant gastroenterologist at the John Radcliffe Hospital in Oxford, UK and lead author of the British Society of Gastroenterology's updated guidelines. Here's a summary of what we discussed in this episode: GOOD NEWS FIRST • Bowel cancer risk in IBD has fallen dramatically over the past 20 years • Current risk: 1.4–1.7 times the general population (much lower than older estimates) • In numbers: 75 in 1,000 IBD patients vs 50 in 1,000 general population KEY RISK FACTORS • Inflammation severity and disease extent (biggest drivers) • "Smouldering" inflammation counts—even without symptoms • Family history of bowel cancer (first-degree relative) • Post-inflammatory polyps (markers of past severe inflammation) • Primary sclerosing cholangitis (PSC)—annual surveillance needed from diagnosis • Most patients start surveillance 8 years after symptom onset YOUR MEDICATIONS PROTECT YOU • Mesalazine and biologics (especially anti-TNFs) reduce cancer risk • Benefits of controlling inflammation outweigh theoretical immune concerns • Keep taking your treatment SURVEILLANCE COLONOSCOPY • Frequency: every 1–3 years depending on individual risk • Well-controlled disease: may only need every 10 years • First surveillance: typically 8 years after symptom onset (earlier with PSC or severe early disease) MAKING COLONOSCOPY MORE TOLERABLE • Lower-volume bowel prep (2 litres or less) now recommended—just as effective • Options: Moviprep, Plenvu, Citrafleet, Picolax • Generous sedation recommended for IBD patients • Propofol deep sedation should be available if needed LIFESTYLE CHANGES THAT HELP • Stop smoking • Maintain healthy weight • Regular exercise • Mediterranean-style diet: less red/processed meat, more fish, fruit, vegetables, olive oil RED FLAGS—SEEK URGENT ADVICE FOR: • Bleeding without diarrhoea • Symptoms not responding to usual treatment • Significant weight loss • Severe pain or abdominal lump • Anything that feels different from your normal IBD pattern FUTURE DEVELOPMENTS • Stool-based biomarker tests to reduce colonoscopy frequency • AI technology for detecting precancerous changes • Genetic tests to guide treatment decisions Remember: surveillance offers protection and promotes good gut health. Early detection of precancerous changes prevents cancer; early cancer detection means cure is possible. Nigel and I would like to thank Professor East sincerely for donating his time for the promotion of patient education in this important area. Here is the link to the online colorectal cancer risk calculator mentioned in the episode: https://ibd-dysplasia-calculator.bmrc.ox.ac.uk/ Here is the link to the British Society of Gastroenterology's updated guidelines on colorectal cancer risk in IBD: https://www.bsg.org.uk/clinical-resource/bsg-guidelines-on-colorectal-surveillance-in-ibd Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

  • January 30 · 39 min

    #26 IBD flares and diet - What does the new PREdiCCT study tell us?

    Send us Fan Mail Welcome to Episode 26 of Wrestling the Octopus IBD! After 10 years studying IBD patients in remission, the first results from the PREdiCCt study have now been published - and it's essential reading: https://gut.bmj.com/content/early/2026/01/19/gutjnl-2025-337846 Nigel and I took the opportunity to sit down with Nathan Constantine-Cooke, a postdoctoral researcher from the University of Edinburgh and inflammatory bowel disease patient himself, to unpack these interesting first results from the UK's largest observational study on IBD flares. Follow Nathan Constantine-Cooke on X/Twitter: @ibdnathan With 2,629 patients recruited across 49 UK hospitals, the PREdiCCt study followed people in remission to understand what actually causes flares - and the findings challenge some long-held assumptions about gut health. Key Takeaways Calprotectin Matters - Even When You Feel Fine The study's most striking finding: faecal calprotectin strongly predicts flares even in patients feeling well. Clear separation emerged between three groups - below 50, 50-250, and above 250. The message for patient-centred care? Lower is better. Some patients had calprotectin levels above 2,500 while feeling completely fine, yet were at much higher risk of flaring. This reinforces the importance of treat-to-target approaches that prioritise biomarkers alongside symptom control. Diet Does Matter - But It's Complicated Surprisingly, the study found different results for Crohn's disease versus ulcerative colitis: Ulcerative colitis patients: Higher meat consumption (including fish) linked to increased objective flare risk Crohn's disease patients: No significant meat association found No consistent links: Ultra-processed foods, fibre, alcohol and fats didn't show the expected connections to flares across either condition These findings suggest a more nuanced approach to dietary advice in inflammatory bowel disease, moving away from one-size-fits-all recommendations. Gender Differences Uncovered Women were more likely to report subjective flares. New research reveals pre-menopausal women showed higher calprotectin levels in remission, with irregular menstrual cycles and increased rectal bleeding during periods associated with patient-reported flares - crucial insights often overlooked in IBD care. What This Means for You As Nathan emphasises, medication remains paramount - diet modifications are supplementary, not substitutes. But for the first time, IBD patients have robust, evidence-based guidance on modifiable lifestyle factors that might influence our disease course. Coming Soon: Additional papers examining psychosocial factors, genetics, microbiome data and women's health factors promise even deeper insights into personalised IBD management. Listen now to understand how biomarker monitoring and thoughtful dietary choices could help you take more control of your gut health journey. Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

  • January 17 · 35 min

    #25 Medical cannabis use in IBD - with Dr Jami Kinnucan from Mayo Clinic, Florida

    Send us Fan Mail We've seen a shift in mood around conversations on medical cannabis in inflammatory bowel disease. While it's most definitely an area that needs tightly controlled monitoring and evidence-based advice, there's a thaw in the discussions that is seeing more IBD healthcare professionals having open talks with their patients about it - and vice versa. So we were delighted when Dr Jami Kinnucan, IBD specialist at Mayo Clinic in Jacksonville, Florida - definitely the doyenne of complementary medicine in IBD - agreed to join us on this podcast episode to discuss a clear, evidence‑based look at medical cannabis use in Crohn’s disease and ulcerative colitis. Key Topics Covered CBD vs THC: Cannabis contains hundreds of phytocannabinoids, but CBD and THC are the most clinically relevant. Both act on the endocannabinoid system, which has a high concentration of receptors in the gut - explaining potential effects on pain, nausea, appetite and motility. Integrative, not alternative: Dr Kinnuncan emphasises integrative medicine - evidence‑based therapies that complement IBD treatment. Cannabis should not replace proven medical therapies, as studies show it does not reduce inflammation or induce remission. What the research shows: Five randomised trials found no improvement in CRP, faecal calprotecti, or endoscopy. However, patients reported better: • abdominal pain • nausea • appetite • diarrhoea • sleep • quality of life Why open dialogue matters: Many patients assume “natural = safe” and hesitate to disclose cannabis use. But cannabinoids can interact with other medications via the liver. Honest, non‑judgmental conversations help clinicians spot interactions, hidden symptoms or missed diagnoses such as strictures or infection. Cannabis Hyperemesis Syndrome: A recognised condition causing cyclical vomiting in daily long‑term users. Hot showers may temporarily relieve symptoms. The only true treatment is stopping cannabis for 30+ days. Holistic IBD care: Dr Kinnucan discusses integrating lifestyle, diet, sleep, exercise, acupuncture, mindfulness and nutraceuticals (including emerging evidence for curcumin‑based supplements) alongside medical therapy. Practical advice for patients: If you’re considering cannabis, first ensure your inflammation is properly assessed and treated. Cannabis may help symptoms, but it can also mask problems that need medical attention. Dr Kinnucan is on X: @ibdgijami Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

  • January 3 · 39 min

    #24 An introduction to IBD surgery - with consultant colorectal surgeon, Raj Mankotia

    Send us Fan Mail In this episode of Wrestling the Octopus IBD, Nigel and Rachel talk with Mr Raj Mankotia, Consultant General and Colorectal Surgeon at Sandwell and West Birmingham Hospitals NHS Trust, to demystify the world of IBD-related surgery. With over 25 years’ experience, Raj talks us through first‑time elective or semi‑elective surgery for Crohn’s disease and ulcerative colitis - why it’s needed, what it involves and how patients can prepare for it. 🔍 Key Topics Covered 1. Why Patients Are Referred for Surgery Raj explains the two main pathways: Elective referrals Failure of medical therapy Persistent symptoms (urgency, bleeding, weight loss, malnutrition) Pre‑cancerous changes or cancer found on surveillance colonoscopy Emergency referrals Severe inflammation Bleeding Perforation 2. “Can I choose surgery instead of medication?” Some patients doing well on medication may still prefer surgery. Raj explains: This is not a routine pathway Decisions are individualised Crohn’s patients will still need maintenance therapy after surgery 3. Fear of Surgery & Fear of Stomas A major theme of the episode. Raj discusses: How stoma decisions are made before surgery, not as a surprise The role of stoma nurses, psychologists and IBD teams in preparing patients Why emergency surgery often requires a temporary stoma 4. Common Misconceptions The biggest one? “Everyone who has IBD surgery ends up with a permanent stoma.” Raj explains why this is not true, and how decisions depend on: Disease location Nutritional status Steroid use He also notes that many patients ultimately choose to keep their stoma because of the improvement in quality of life. 5. Crohn’s Surgery: Ileal / Ileocaecal Resection Raj outlines: Why this is the most common Crohn’s operation What the surgery involves He also discusses how recurrence rates have improved with modern biologics. 6. Ulcerative Colitis Surgery Key points include: Around 20–30% of UC patients may need surgery Emergency surgery usually involves total colectomy, leaving the rectum Reasons for leaving the rectum include protecting pelvic nerves (bladder and sexual function) 7. J‑Pouch Surgery Raj gives a realistic, balanced overview: Can be done laparoscopically A pouch is made from small bowel to mimic rectal function Outcomes vary: ~50% have excellent function ~50% have more challenging function 8. Preparing for Elective Surgery Patients may be advised to: Optimise nutrition Taper steroids Stop smoking 9. Hospital Stay & Recovery Typical expectations: Enhanced recovery programme Drinking on day 1, light food on day 2 Early mobilisation Raj also explains postoperative ileus - why it happens and how it’s managed. 10. What Patients Wish They’d Known Raj shares reflections from his clinics: Many wish they’d had surgery earlier Many are surprised by how much better they feel Some who had emergency surgery and complications question the timing 📩 Get in Touch If you have questions for future surgical episodes or topics you’d like covered: 📧 wrestlingtheoctopusibd@gmail.com Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

  • Dec 19, 2025 · 39 min

    #23 Intestinal ultrasound (IUS) in IBD - with Dr Gauraang Bhatnagar and Dr William Blad

    Send us Fan Mail In episode 23 of Wrestling the Octopus IBD, Nigel and I welcome consultant radiologist, Dr Gauraang Bhatnagar (Frimley Health NHS Foundation Trust) and consultant gastroenterologist, Dr Will Blad (Barts Health Foundation Trust) to our podcast to discuss intestinal ultrasound (IUS) in inflammatory bowel disease. 🩺 Key Discussion Points 1. What is Intestinal Ultrasound (IUS)? Non-invasive imaging technique for assessing Crohn's disease and ulcerative colitis Performed by gastroenterologists and radiologists. Increasingly used in clinics and flare settings to reduce reliance on MRI and colonoscopy. 2. Role Compared to Colonoscopy Colonoscopy remains essential for diagnosis and cancer surveillance. IUS reduces need for repeated colonoscopies and MRIs. Best care comes from combining modalities - no single test is perfect. 3. Preparation Minimal prep required (short fast, full bladder). Often performed without prep in clinic or inpatient settings. Patient-friendly compared to colonoscopy bowel prep. 4. What Does IUS Show? Focuses on bowel wall thickness, middle and outer layers and complications outside the bowel. Observes bowel in its natural state, unlike MRI or colonoscopy. Can detect strictures, narrowings, and motility issues. Patients can see images live, strengthening engagement and understanding. 5. Detecting Complex Pathology Depth limitations: deeper structures harder to visualize. Best practice: baseline imaging with MRI/colonoscopy plus IUS. IUS then used for repeat monitoring and treatment adjustments. 6. Empowering IBD Patients Patients value seeing their scans in real time. Builds trust and strengthens shared decision-making. Encourages adherence to treatment when improvements are visible. 7. Monitoring Remission & Flares IBD is unpredictable; flares can occur despite remission. IUS is well tolerated, cheaper, and acceptable for regular monitoring. Helps detect subclinical disease activity early. 8. Duration of IUS Acute severe colitis: a few minutes. Complex Crohn’s disease: 15–20 minutes. Typical clinic use: 5–15 minutes depending on complexity. 9. Expanding IUS in the UK Vision: IUS available in every IBD service nationwide. Current uptake: limited, mostly in London and radiology departments. Need for training, shared expertise, and national coordination. 10. Shared Decision-Making Patients feel more connected when they see scans. Radiologists gain a more clinical role, motivating patients through visible progress. Strengthens collaboration between patients and clinicians. 11. Limitations Not suitable for all conditions; CT, MRI, or colonoscopy still required in many cases. Obesity and deep pelvic loops can reduce image quality. Baseline imaging helps determine which modality is best for ongoing monitoring. 12. Equipment & Technology Standard ultrasound machines with specialized probes and optimized settings. Recent advances allow greater detail, driving wider adoption of bowel ultrasound. 13. Patient Education & Advocacy Need for more patient-facing materials on IUS. Collaboration with Crohn’s & Colitis UK, IBD UK, and other societies Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

  • Dec 2, 2025 · 29 min

    #22 IBD Then & Now: Patients' Reflections for Crohn's & Colitis Awareness Week

    Send us Fan Mail Welcome to Episode 22 of Wrestling the Octopus IBD! A reminder of our new email address if you'd like to get in touch: wrestlingtheoctopusibd@gmail.com In this Crohn’s & Colitis Awareness Week special, Nigel and I take a look in the rear view mirror to ponder our decades of lived experience with inflammatory bowel disease - from treatment and attitudes, to advocacy and patient empowerment, to stress and stigma. And of course, our definition of patient‑centred care. We hope you will find this episode honest, insightful and, above all, hope-giving. 🗝️ Key Themes Awareness & Advocacy: The rise of patient ambassadors, charities and campaigns that have helped de‑stigmatise stomas and raise public understanding of Crohn's disease and ulcerative colitis. Patient‑Centred Care: How shared decision‑making has evolved from prescriptive medicine to collaborative conversations, while acknowledging ongoing challenges. Treatment Journeys: From IV steroids and their long‑term effects to biologics like infliximab - and the growing pipeline of advanced therapies. Stress & Coping: Emotional vs. physical stress, survival mechanisms and the importance of self‑compassion. Work & Flexibility: How working from home and flexible arrangements can ease daily challenges for patients. Language Matters: The role of healthcare professionals in framing stomas and surgery with positive, balanced language. Messages to Patients: Nigel emphasises letting go of guilt and keeping a sense of humour, while Rachel encourages education, rounded perspectives, and not sweating the small stuff. 📬 Get Involved Email: wrestlingtheoctopusibd@gmail.com Twitter/X: Nigel: @Crohnoid Rachel: @BottomLineIBD 🔮 Coming Up in 2026 Intestinal ultrasound (IUS): is it an alternative to colonoscopy? Conversations with a surgeon about surgery decisions for IBD patients. Complementary medicine in IBD with a Mayo Clinic consultant. Future episodes on IBS in IBD and cardiac health in IBD. Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

Showing 1–20 of 23 episodes