Wrestling the Octopus (IBD)

Send us Fan MailIn 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_siarachFollow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailBlood 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 @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailFor 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 @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailDid 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 GuestsDr. 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 monitoringSymptoms to Watch ForEarly 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 sideGallstones and Crohn's DiseaseCrohn'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 EpisodePSC: 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 mistakesGet in TouchHave a topic you'd like us to cover? Email us at [email protected] Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailWe 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 @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailThe 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 populationKEY 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 onsetYOUR MEDICATIONS PROTECT YOU• Mesalazine and biologics (especially anti-TNFs) reduce cancer risk• Benefits of controlling inflammation outweigh theoretical immune concerns• Keep taking your treatmentSURVEILLANCE 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 neededLIFESTYLE CHANGES THAT HELP• Stop smoking• Maintain healthy weight• Regular exercise• Mediterranean-style diet: less red/processed meat, more fish, fruit, vegetables, olive oilRED 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 patternFUTURE DEVELOPMENTS• Stool-based biomarker tests to reduce colonoscopy frequency• AI technology for detecting precancerous changes• Genetic tests to guide treatment decisionsRemember: 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-ibdFollow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailWelcome 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-2025-337846Nigel 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: @ibdnathanWith 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 TakeawaysCalprotectin 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 YouAs 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 @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailWe'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 CoveredCBD 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: @ibdgijamiFollow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailIn 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 Covered1. Why Patients Are Referred for SurgeryRaj explains the two main pathways:Elective referralsFailure of medical therapyPersistent symptoms (urgency, bleeding, weight loss, malnutrition)Pre‑cancerous changes or cancer found on surveillance colonoscopyEmergency referralsSevere inflammationBleedingPerforation2. “Can I choose surgery instead of medication?”Some patients doing well on medication may still prefer surgery. Raj explains:This is not a routine pathwayDecisions are individualisedCrohn’s patients will still need maintenance therapy after surgery3. Fear of Surgery & Fear of StomasA major theme of the episode.Raj discusses:How stoma decisions are made before surgery, not as a surpriseThe role of stoma nurses, psychologists and IBD teams in preparing patientsWhy emergency surgery often requires a temporary stoma4. Common MisconceptionsThe 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 locationNutritional statusSteroid useHe 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 ResectionRaj outlines:Why this is the most common Crohn’s operationWhat the surgery involvesHe also discusses how recurrence rates have improved with modern biologics.6. Ulcerative Colitis SurgeryKey points include:Around 20–30% of UC patients may need surgeryEmergency surgery usually involves total colectomy, leaving the rectumReasons for leaving the rectum include protecting pelvic nerves (bladder and sexual function)7. J‑Pouch SurgeryRaj gives a realistic, balanced overview:Can be done laparoscopicallyA pouch is made from small bowel to mimic rectal functionOutcomes vary:~50% have excellent function~50% have more challenging function8. Preparing for Elective SurgeryPatients may be advised to:Optimise nutritionTaper steroidsStop smoking9. Hospital Stay & RecoveryTypical expectations:Enhanced recovery programmeDrinking on day 1, light food on day 2Early mobilisationRaj also explains postoperative ileus - why it happens and how it’s managed.10. What Patients Wish They’d KnownRaj shares reflections from his clinics:Many wish they’d had surgery earlierMany are surprised by how much better they feelSome who had emergency surgery and complications question the timing📩 Get in TouchIf you have questions for future surgical episodes or topics you’d like covered:📧 wrestlingtheocFollow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailIn 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 Points1. What is Intestinal Ultrasound (IUS)?Non-invasive imaging technique for assessing Crohn's disease and ulcerative colitisPerformed by gastroenterologists and radiologists.Increasingly used in clinics and flare settings to reduce reliance on MRI and colonoscopy.2. Role Compared to ColonoscopyColonoscopy 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. PreparationMinimal 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 PathologyDepth 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 PatientsPatients 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 & FlaresIBD 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 IUSAcute 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 UKVision: 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-MakingPatients 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. LimitationsNot 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 & TechnologyStandard ultrasound machines with specialized probes and optimized settings.Recent advances allow greater detail, driving wider adoption of bowel ultrasound.13. Patient Education & AdvocacyNeed for more patient-facing materials on IUS.Collaboration with Crohn’s & Colitis UK, IBD UK, and other societiesFollow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailWelcome to Episode 22 of Wrestling the Octopus IBD! A reminder of our new email address if you'd like to get in touch: [email protected] 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 ThemesAwareness & 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 InvolvedEmail: [email protected]/X:Nigel: @CrohnoidRachel: @BottomLineIBD🔮 Coming Up in 2026Intestinal 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 @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailYou can now email us at [email protected] - we'd love to hear your thoughts, ideas and feedback on our IBD patient podcast! And if you like what you hear, please spread the word to others with an interest in Crohn's disease and ulcerative colitis.In this specially curated episode - for want of another phrase! - Nigel takes us on his personal and often amusing journey through his A–Z of Crohn’s disease experiences. From bone marrow biopsies to varices, stomas to sedation, he shares the gritty, surreal and occasionally entertaining realities of living with inflammatory bowel disease. For my part, I am the foil to his wit, with commentary, questions and a couple of my own stories - including a mention for my upcoming blog, The Perianal Diaries.💬 Nigel's Memorable Quotes“I woke up mid-gastroscopy, took a photo... and went back to sleep.”“When I reveal my stoma, you’ll see a pretty good impression of Mick Jagger.”“I’ve made a living out of people assuming I knew more than I do.”📣 Listener Call-OutHave you had TPN? Experienced Metronidazole side effects? Got your own stoma story? We’d love to hear from you. 📧 [email protected] Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailThe tables are turned in this episode! Now Rachel interviews Nigel about his life-changing bowel surgery in 2010. Fifteen years on, Nigel reflects on the symptoms that led to his Crohn's surgery, the emotional and practical preparations, and the highs and lows of recovery - including living with a temporary stoma and navigating postoperative ileus. With his trademark candid storytelling and humour, Nigel shares how planning, shared decision-making and trust in his healthcare team helped him transform fear into confidence. A must-listen for anyone facing IBD surgery or supporting someone who is.🧠 Key Discussion PointsThe inflammatory bowel disease symptoms that led to surgery: stricture, pain, fistulas, and the infamous “octopus” scanWhat “semi-elective” surgery means and why it mattersEmotional and practical preparation: writing a will, planning recovery, and managing expectationsThe psychological impact of being treated at St Thomas’ HospitalNigel’s experience with a temporary stoma - from initial shock to newfound confidenceThe challenges of postoperative ileus and nasogastric tubesThe importance of shared decision-making and asking the right questionsHow surgery reshaped Nigel’s relationship with healthcare and his own resilience📌 Listener TakeawaysSurgery can be life-saving and life-enhancing - not just a last resortPlanning ahead (emotionally, practically, legally) can ease the stress of major treatmentHospital environment and staff support play a huge role in recoveryTemporary stomas can offer unexpected benefits - including confidence and freedomPostoperative challenges like ileus are real and difficult, but manageable with supportA positive surgical experience can reshape your relationship with healthcareAsk questions, understand your options, and prepare realisticallyShared decision-making empowers patients and improves outcomes📣 Where to ListenAll episodes of Wrestling the Octopus are available on Apple Podcasts, Spotify, Amazon Music, or wherever you get your podcasts.Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailIn this anniversary special, Nigel interviews me about my decision to stop taking medication (infliximab, aka Remicade) for my inflammatory bowel disease, and what reflections I have on staying in remission four years later. Discussion PointsMy rationale for stopping infliximab after nearly a decade of IBD remissionThe emotional weight of sharing my decision publicly and the need for sensitivityThe importance of not being labeled “anti-medication” when choosing to de-escalateHow my consultant’s support helped with the decisionLife stressors post-withdrawal — bereavement, menopause, moving house - and the surprising lack of impact on my Crohn's diseaseThe critical role of monitoring: calprotectin, blood tests, colonoscopy and patient responsibilityNigel’s contrasting experience with vedolizumab and the discovery of small bowel inflammation via capsule endoscopyThe need for healthcare professionals to embrace and not shut down conversations about drug withdrawal📌 Listener TakeawaysEvery IBD journey is unique - comparison is unhelpful, autonomy is essentialComing off medication is not a rejection of medicine, but a personal trialHealthcare professionals should be open to discussing drug withdrawal, even if they don’t recommend itLife context and support systems are crucial when making treatment decisionsMonitoring is non-negotiable: calprotectin, bloods, colonoscopy, and patient engagement are keyDon’t rely solely on how you feel — tests can reveal hidden inflammationPatients must take ownership of their health, especially when off medication🎯 Final MessagesTo Patients: Only consider drug withdrawal if you feel truly ready. Examine your life context, support systems and emotional readiness. Don’t let others pressure you - this is your decision, and your health.To Healthcare Professionals: Embrace conversations about drug withdrawal, even if you disagree. Patients need open dialogue, not closed doors. Your support can make all the difference in helping them navigate their choices safely.📣 What’s NextIn the next episode, Rachel interviews Nigel about his 15-year anniversary of a life-changing experience with IBD. Stay tuned!Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailMeet Olie Bosley.Olie is an IT and cybersecurity expert from Oxford, UK who has suffered from Crohn's disease symptoms for nearly 30 years.We invited Olie to join us for this episode as he has an important story to share: what happens when the drug that has kept you well for so long - in his case Humira (adalimumab) - without notice causes you side effects that mean you need to stop taking it. Olie speaks with candour to Nigel and me on the practical and psychological challenges this brings a patient who hitherto had well controlled inflammatory bowel disease. His story is a testament to resilience, advocating for oneself and the importance on inter-department communication when treating IBD patients.🔍 What You’ll LearnHow a childhood injury may have shaped Olie’s health trajectoryThe possible link between seronegative arthritis and Crohn’s diseaseWhy Olie delayed his first colonoscopy... and what changed his mindThe impact of NSAIDs on gut health and Crohn’s progressionOlie’s experience with methotrexate, azathioprine, Humira, infliximab, ustekinumab and RinvoqThe overlooked reality of bile acid malabsorption after TI surgeryHow UVB therapy helped resolve a Humira-related skin reactionThe importance of communication between rheumatology, dermatology and IBD teamsYou can follow Olie Bosley on X (@Olski).Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailIn this episode, we gaze deep into the gut-brain axis with Dr. Gita Robson, a clinical psychologist who specialises in  gastroenterology. Our brains and guts chatter in both directions constantly, and we wanted to understand if this had an implications in how Crohn's and ulcerative colitis patients can better manage their disease.🔍 What We CoverWhy the gut might be our “first brain”The bidirectional nature of the gut-brain axisHow inflammation, stress and mood are interconnectedThe vagus nerve’s role in gut-brain communicationMicrobiome diversity and its impact on immunity and mental healthThe influence of lifestyle factors - including pets, sleep and exercisePsychological therapies that reduce inflammation and improve IBD outcomesStrategies for pain management and building a healthier relationship with discomfortThe impact of sleep disruption on digestion, mood and inflammationHow small changes can break the cycle of stress and flare-ups💡 Key TakeawaysThe gut-brain axis is a two-way street: what happens in your gut affects your brain and your mental state can influence gut function.Stress, anxiety, and depression can worsen IBD symptoms and inflammation - but they’re also modifiable.Therapies like CBT, ACT and mindfulness-based stress reduction show promise in improving both mood and inflammatory markers.Lifestyle factors - including diet, sleep, physical activity, and even pet ownership - shape your microbiome and mental health.Pain management isn’t just about distraction - it’s about changing how we relate to pain and reclaiming meaningful activities.Sleep disruption can trigger a cascade of stress responses that affect digestion, mood and inflammation.Even the smallest change such as a walk, a conversation or a moment of connection can help break the cycle.📚 Resources MentionedNICE guidelines on first-line treatment for depressionResearch from King’s College London on psychological interventions and inflammatory biomarkersStudies on microbiome diversity and depression in IBDNew York Times article on vagus nerve stimulationFollow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailIn Episode 16 of Wrestling the Octopus: The IBD Patient Podcast, we're talking a perennial favourite with Crohn's and UC patients: diet and nutrition in inflammatory bowel disease. Our expert guest is Dearbhaile O'Hanlon, principal gastroenterology dietitian at Guy's & St Thomas' Hospital in London, UK.  We discuss everything from emulsifiers and ultra-processed foods to prebiotics, probiotics and the Mediterranean diet, Nigel shares his journey through a food additive trial (and his now-famous homemade bread), while Rachel reflects on the challenge of distinguishing flares from functional symptoms. Whether you’re newly diagnosed or you've had inflammatory bowel disease for years, this episode will give you a great overview of diet in IBD.Key Topics Covered:🍽️ Can diet cause IBD? What the evidence says🥣 Exclusive enteral nutrition vs Crohn’s Disease Exclusion Diet🥗 Mediterranean diet: a safe bet for remission?🧪 Emulsifiers, ultra-processed foods & emerging research🧬 Prebiotics vs probiotics: what’s the difference, and do they help?🚽 “Evacuate!” moments: food triggers vs flares vs functional symptoms🧠 Gut-brain signaling and why some foods are louder than others🩺 Low FODMAP diet: when and how to trial it safely🧻 Diet tips for stoma management, bloating, and gas🌾 Soluble vs insoluble fibre: what they are and where to find them🧬 Strictures and modified fibre diets: what’s safe, what’s risky📱 Food diaries and apps: helpful tools or homework overload?🌳 Bark, miracle cures & internet myths: how to spot misinformationWhat You Will LearnThere’s no one-size-fits-all IBD diet, but there are patterns worth exploringUltra-processed foods and certain emulsifiers may play a role in inflammationPrebiotics (like onions, garlic, pulses) can be beneficia but also bloating triggersProbiotics may help some people with UC, but evidence is mixed and costs can be highIf you’re in remission but still sensitive, it might be functional symptoms but not active inflammationFor stoma care: chew well, watch fizzy drinks and caffeine and consider a gentle food challenge processWith strictures, insoluble fibre may need to be reduced or blended though soluble fibre can still helpIf it sounds too good to be true, it probably is - so always check with your clinical teamThe benefits of using food diariesFollow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailIn Episode 15 of Wrestling the Octopus: the IBD Patient Podcast, Nigel and I cover a topic that receives not nearly as much attention as it should: Bile Acid Diarrhoea (BAD) / Bile Acid Malabsorption (BAM) in Crohn's disease. Our expert guest is gastroenterologist, Professor Julian Walters from Imperial College London in the UK.Through Nigel's story, we also get a candid view of what BAM feels like for inflammatory bowel disease patients who have had their terminal ileum removed. What You'll Learn In this EpisodeWhat is BAD/BAM? How bile acids normally work versus what happens when they’re not reabsorbed properly, especially in IBD patients with ileal disease or resection.Updated terminology: Why “bile acid diarrhoea” is now preferred over “bile acid malabsorption,” and what that means for diagnosis and treatment.Common causes of BAD: Crohn’s disease, gallbladder removal and genetic variants that lead to excess bile acid production.How to get diagnosed: A breakdown of the SeHCAT scan, C4 blood test and why access to testing varies across the UK.Treatment options that work: From bile acid sequestrants (like colesevelam and cholestyramine) to loperamide - can combining them help?Getting the timing right: Why taking sequestrants at night on an empty stomach may be more effective than following cholesterol-lowering instructions.Diet and lifestyle tips: How fatty meals can trigger symptoms and what you can do to reduce flare-ups.Emerging treatments: A glimpse into GLP-1 receptor agonists like liraglutide and semaglutide, and their potential role in managing BAD.Key PointsBAD affects more people than Crohn’s disease or ulcerative colitis - yet it remains underdiagnosed.SeHCAT is the gold standard test, but blood tests like C4 may offer cheaper alternatives soon.Don’t rely on loperamide (Imodium) without a formal diagnosis of BAD / BAM.If your symptoms fluctuate, track your diet as fatty meals may be the culprit.Nighttime dosing of sequestrants might be a game-changer for symptom control.Follow Professor Julian Walters on FacebookFollow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailEvery IBD patient will have likely had a run-in with iron deficiency or anaemia at some point while living with ulcerative colitis or Crohn’s disease. And for many of us it’s a constant problem.So in this episode of Wrestling the Octopus: The IBD Patient Podcast, Nigel and I wanted to invite an iron expert to join us and talk us through what inflammatory bowel disease patients need to know about managing iron deficiency and anaemia.And who better to invite than the iron guru himself?! Professor Toby Richards, a London-based vascular surgeon and founder of The Iron Clinic explains how iron affects everything from energy and performance to recovery and mental health. We also chat about common dietary myths (Popeye got it wrong!), iron infusions vs tablets and the realities of living with Crohn’s disease or ulcerative colitis when you’re low in iron. Whether you're newly diagnosed or managing long-term IBD, this episode will help you understand your iron levels and explore treatment options that work. What We Cover In This EpisodeThe difference between iron deficiency and anaemiaWhy normal haemoglobin doesn’t rule out iron deficiencyHow low ferritin affects energy, cognition and mental healthThe surprising overlap between iron deficiency and ADHD-like symptomsWhy menstruating women with IBD face a “double whammy” of iron lossThe pros and cons of oral iron vs. intravenous iron infusionsWhat to expect before, during and after an iron infusionHow iron deficiency can mimic anxiety, fatigue and brain fogWhy IBD patients often “normalise the abnormal”—and how iron treatment can address this problem and restore quality of life IBD & IronIBD patients face unique challenges when dealing with low iron: chronic blood loss, inflammation that blocks iron transport, and gut sensitivity that makes oral iron hard to tolerate. Professor Richards explains why iron levels are different for people with Crohn's and UC, and how personalised care can dramatically improve our quality of life. Mental Health & Iron: Professor Richards tells us that in one study, 17% of women treated for anxiety or depression had low iron—and what happened after their iron levels were restored. He urges healthcare professionals to test iron before starting mental health medications, especially when symptoms like brain fog, fatigue and low mood are impacting on IBD patients' lives. For more information on Professor Toby Richards and The Iron Clinic, please visit https://www.theironclinic.com/Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailWelcome back, folks!Think of this episode as a commercial break between our interviews with patients and healthcare professionals. In Episode 13, Nigel and I shoot the breeze about our lives with inflammatory bowel disease... with a little bit of insight into what it means to be a patient with either Crohn's disease or ulcerative colitis. We also swap notes on the annoying healthcare-related things we would like to consign to Room 101, given half the chance!We hope you enjoy listening to our patient podcast on living with IBD. Please don't forget to spread the word if you're enjoying these podcasts - and do let us know if there's anything you'd like us to cover in future episodes. Thanks as always for your support!Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailAsk anyone living with Crohn's disease or ulcerative colitis what their main concerns are and you'll find the topic of mental health in IBD right up there, top of the list.So Nigel and I were delighted when we found out a mental health expert wanted to come onto our podcast to share a few pearls about supporting good mental health in IBD.Welcome to Dr Stacey Boardman, an IBD clinical psychologist at Calderdale and Huddersfield NHS Foundation Trust. Stacey talks to us about her role on the gastro psychology team and how she supports IBD patients across a whole host of issues faced when living with inflammatory bowel disease.As ever, we hope you enjoy this episode. And please do let us know of other topics you would like to see covered on Wresting the Octopus: The IBD Patient Podcast.Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailAuthor Vicky Ball has lived with mild inflammatory bowel disease since 2021. She has published two teen fiction books, with a third adult fiction book in the works.In this episode of Wrestling the Octopus: The IBD Patient Podcast, Vicky talks to us about how she manages her career as a writer while living with IBD. She also tells us about her now-famous viral moment with her book sales.We hope Vicky's story spurs on many aspiring writers with IBD to achieve their publishing dreams!You can follow Vicky on X at @vickyball3Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailGetting older with inflammatory bowel disease - be that Crohn's or ulcerative colitis - comes with specific challenges and tailored decision-making with our healthcare teams.This includes considering drug safety as we age, other conditions (co-morbidities) we develop as we get older, plus the safety of procedures - and much more besides.So we are delighted to welcome to this episode Dr Adam Faye, gastroenterologist at NYU Langone in the US, who delivers a tour-de-force guide to ageing with IBD. Dr Faye specialises in this subject in his New York practice.As ever, please let us know your feedback on the podcast - plus ideas for future subjects and guests.We hope you enjoy this episode! And our warmest thanks to Dr Faye for donating his time so generously in the name of IBD patient education!Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailGoing on your summer holidays? Travelling with Crohn's or ulcerative colitis? Join us on our latest episode of Wrestling the Octopus: The IBD Patient Podcast as we chat with Kay Greveson, Kay is the founder of IBD Passport - a brilliant resource and educational website for people with IBD who need information on travel with their disease. We talk about the Sunflower Lanyard; what to do if you need the toilet when the seatbelt signs are on; adapting to diet in different countries; travelling with medication - and much more besides.See ibdpassport.com for more information. You can also follow Kay at @ibdpassport on social media.Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailIn this episode of Wrestling the Octopus: The IBD Patient Podcast, Nigel and I are delighted to welcome Rob, our first IBD patient guest on the show!Rob talks to us about his diagnosis of Crohn's as a Brit in the USA. We absolutely loved speaking with him - highly relatable and a really nice guy to boot!Let us know what you think - plenty more patient episodes coming up!Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailWho can believe we've notched up 7 episodes already?!But indeed we have!If you have Crohn's disease or ulcerative colitis, you will doubtless have had (or are due to have) a colonoscopy or three.In this episode, we reflect on our past experiences of having colonoscopies. As well as the ouch! moments, there are some top tips along the way...As ever, please let us know your thoughts too - and we welcome suggestions for future topics to cover.Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailIn Part 2 of Episode 6 of Wrestling the Octopus IBD, we put some more IBD patient questions to consultant gastroenterologist, Dr Mark Samaan from Guy's & St Thomas' Hospital in London.This time we're asking what is the definition of an IBD flare, how frequently patients should be monitored - both in active disease and remission - and whether there is a place for surgery as an early treatment option.Nigel and I would like to thank Dr Samaan for generously donating his time as a medical guest on these two podcasts.We'd love to hear your feedback as we plan our future episodes!Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailNigel and I had the pleasure of recording a two-part podcast for Episode 6 of Wrestling the Octopus with consultant gastroenterologist, Dr Mark Samaan.Dr Samaan treats IBD patients at Guy's & St Thomas' Hospital in London - where the service has around 6,000 patients on its books.We are really grateful to Dr Samaan for answering some of the common questions that Crohn's and UC patients have about their disease.This episode is Part 1 of 2.Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailIn Episode 5 of Wrestling the Octopus, Nigel and I discuss our definition of "good medicine". What does this term mean to us as patients - and how might it differ from how healthcare professionals define it?Should "good medicine" take in all the softer clinical skills that go beyond academic knowledge, or is the focus on getting the right drug to the right patient?As ever, we welcome your feedback on this episode. And don't forget that we're always glad to hear your suggestions for future topics!Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailIn our fourth episode of Wrestling the Octopus IBD, recorded to mark World IBD Day, Nigel and I busk our way through various IBD topics. Whatever comes to mind - in whichever order - that we think merits discussion. Some serious, some silly.We talk managing fatigue, the cost of living with Crohn's, the crazy things that steroids made us do, and why neither of us like the idea of wearables to track our IBD. Plus lots more.We'd love to hear your opinions too and, as ever, let us know what you'd like us to talk about in future episodes.Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailWelcome to Episode 3 in our 8-part podcast series on living with inflammatory bowel disease. In this episode we're talking about how to advocate for yourself (and others, if you're a carer) to give your health the best opportunity to thrive. Nigel and I give our opinions on what we think advocacy is and some examples of when we used to it to good effect, plus a personal anecdote of how not advocating can cause disadvantage,We hope you enjoy this episode - as ever, we would love to hear your thoughts and feedback.Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailWelcome to Episode 2 in our 8-part podcast series on living with inflammatory bowel disease. We’re talking how we take medication in this episode: IV infusions, self-injectables (sub-cut) and oral tablets. What are the pros and cons of each method and how do anxiety, disease state and other factors influence patient decisions on how to receive medication? And why might oral medication not necessarily be the choice of patients even though it’s undoubtedly convenient? We also mention a recent study on whether to disclose Crohn’s disease at work. Here is the link if you’d like to read more on that: https://www.mdpi.com/2624-5647/7/1/18 We hope you enjoy this podcast... please do let us know your thoughts!Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailWelcome to the first in our 8-part podcast series on living with inflammatory bowel disease.Two IBD patients. Both in remission. One used to be on medication, but isn't anymore. The other didn't used to be on medication, but is now.With a total of 70 years of lived IBD experience between us, Nigel (@crohnoid) and myself (@bottomlineibd) discuss our different opinions on starting and stopping our Crohn's medications.We also have advice for patients and healthcare professionals who are navigating this difficult topic.We hope you enjoy this podcast... and we welcome your feedback on our first episode! Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid