Wrestling the Octopus (IBD)

Rachel (@bottomlineibd) and Nigel (@crohnoid)
  • 5.0 (1)
  • MEDICINE

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. 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

    40 min

  2. 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

    33 min

  3. MAR 14

    #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

    45 min

  4. FEB 28

    #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 useMedication reactions - IBD treatments such as methotrexate, azathioprine and biologics can all affect liver functionAutoimmune hepatitis - where the immune system attacks liver cellsGallstones - Crohn's disease affects how the body processes bile acids, increasing the riskPrimary 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 IBDPSC 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 otherPSC 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 skinFevers, chills and rigors - signs of bile duct infectionAbdominal 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&EGrumbling, 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 BerryNecessary 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 Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

    28 min

  5. FEB 18

    #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

    32 min

  6. FEB 12

    #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

    45 min
  7. #26 IBD flares and diet - What does the new PREdiCCT study tell us?

    JAN 30

    #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 riskCrohn's disease patients: No significant meat association foundNo consistent links: Ultra-processed foods, fibre, alcohol and fats didn't show the expected connections to flares across either conditionThese 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

    39 min

  8. JAN 17

    #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 lifeWhy 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

    36 min
See All (33)

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).

Information

  • Creator
    Rachel (@bottomlineibd) and Nigel (@crohnoid)
  • Years Active
    2025 - 2026
  • Episodes
    33
  • Rating
    Clean
  • Copyright
    © 2026 Wrestling the Octopus (IBD)
  • Show Website
    Wrestling the Octopus (IBD)

You Might Also Like