Wrestling the Octopus (IBD)

Rachel (@bottomlineibd) and Nigel (@crohnoid)

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

  1. #26 IBD flares and diet - What does the new PREdiCCT study tell us?

    1D AGO

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

    Send us a text 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
  2. JAN 17

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

    Send us a text 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
  3. JAN 3

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

    Send us a text 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 Covered1. Why Patients Are Referred for Surgery Raj 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 Stomas A 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 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 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 Resection Raj 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 Surgery Key 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 Surgery Raj 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 Surgery Patients may be advised to: Optimise nutritionTaper steroidsStop smoking9. Hospital Stay & Recovery Typical 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 Known Raj 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: 📧 Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

    39 min
  4. #23 Intestinal ultrasound (IUS) in IBD - with Dr Gauraang Bhatnagar and Dr William Blad

    12/19/2025

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

    Send us a text 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 colitisPerformed 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 societiesFollow Rachel at @bottomlineibd Follow Nigel at @crohnoid

    40 min
  5. #22 IBD Then & Now: Patients' Reflections for Crohn's & Colitis Awareness Week

    12/02/2025

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

    Send us a text 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.comTwitter/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 @bottomlineibd Follow Nigel at @crohnoid

    29 min
  6. 10/25/2025

    #19 Rachel reflects on staying in Crohn's remission, four years after stopping infliximab

    Send us a text In 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 Points My 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 Takeaways Every 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 Messages To 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 Next In the next episode, Rachel interviews Nigel about his 15-year anniversary of a life-changing experience with IBD. Stay tuned! Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

    21 min
  7. 10/25/2025

    #20 Nigel reflects on 15 years post-Crohn's op, and a life-changing experience

    Send us a text The 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 Points The 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 Takeaways Surgery 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 Listen All episodes of Wrestling the Octopus are available on Apple Podcasts, Spotify, Amazon Music, or wherever you get your podcasts. Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

    22 min

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).