Wrestling the Octopus IBD

Send us Fan MailGLP-1 drugs have transformed the conversation around weight loss, but could they also play a role in managing inflammatory bowel disease (IBD)? In this episode of Wrestling the Octopus IBD, we are joined by a world leader in gastroenterology, Dr David Rubin, professor of gastroenterology, hepatology and nutrition at the University of Chicago. He educates our listeners on what these medications could mean for people living with Crohn's disease and ulcerative colitis. Dr Rubin explains how GLP-1 drugs work beyond appetite suppression, including their effects on gut motility, metabolism, inflammation and overall gut health. The discussion looks at why obesity and excess body fat have become increasingly common in people with IBD, and how reducing inflammation associated with fat tissue may potentially benefit long-term health. The conversation explores emerging research into GLP-1 drugs such as semaglutide and tirzepatide, including studies investigating whether they may help reduce intestinal inflammation alongside traditional IBD treatments. Dr Rubin shares insights from his own clinical practice, where these medications are already being used in selected patients with Crohn's disease and ulcerative colitis. One of the most fascinating themes in this episode is the emerging field of immunometabolic health. Dr Rubin explains how metabolism, body fat and the immune system are closely connected, and why improving metabolic health may help reduce inflammation in people with Crohn's disease and ulcerative colitis. The discussion explores whether GLP-1 drugs could offer benefits beyond weight loss, potentially becoming part of a broader approach to inflammatory bowel disease care.Dr Rubin also discusses important practical considerations, including side effects, nutritional monitoring, exercise, muscle loss and the need for careful medical supervision. The episode addresses who may benefit from GLP-1 treatment, who may need additional caution and why symptom improvement does not necessarily mean underlying inflammatory bowel disease is under control. Along the way, the discussion covers rapid gut transit in people with ileostomies and J-pouches, mesenteric fat, intestinal ultrasound, immunometabolic health and why comprehensive care should focus on the whole person, not just the bowel. There is even time for a lively diversion into bile acid malabsorption, one of Nigel's favourite topics. Whether you are considering GLP-1 drugs for weight loss, curious about the latest Crohn's disease and ulcerative colitis research or interested in the future of gut health and IBD care, this episode offers a balanced and evidence-based look at one of the most talked-about developments in gastroenterology. In this episode:Why GLP-1 drugs are generating so much interest in IBDHow GLP-1 medications affect appetite, digestion and gut motilityThe links between obesity, inflammation and inflammatory bowel diseaseWhether GLP-1 drugs may help people with Crohn's disease and ulcerative colitisCurrent research into semaglutide, tirzepatide and IBDPotential benefits for people with ileostomies and J-pouchesSide effects, safety considerations and monitoringThe importance of nutrition, exercise and preserving muscle massNew developments in intestinal ultrasound and personalised IBD careWhat the next five years of GLP-1 and gut health research might look likeFollow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailLiving with pain is a common and debilitating aspect of inflammatory bowel disease (IBD), including Crohn's disease and ulcerative colitis. In this episode of Wrestling the Octopus IBD, we are joined by Dr Jessica Sheehan, IBD specialist at the University of Michigan Health in Ann Arbor. She gives us excellent advice on how IBD patients can manage pain.Dr Sheehan explains that abdominal pain does not always mean your IBD is flaring. While active inflammation can certainly cause pain, symptoms may also arise from complications such as strictures, infections, fistulas or changes in how the gut and nervous system process pain signals. A major focus of the discussion is visceral hypersensitivity and central sensitisation, where the gut and brain become more sensitive to pain after repeated periods of inflammation. This can leave some people with significant symptoms despite normal tests and well-controlled disease. [The conversation also challenges common misconceptions about pain in Crohn's and ulcerative colitis. Dr Sheehan explains that the gastrointestinal tract contains an extensive nervous system and that pain can result from stretching, distension, gas and other stimuli, not just active inflammation. Pain Management Options DiscussedThe episode explores a range of pain management approaches, including:Treating underlying inflammation where presentAppropriate use of paracetamol and discussion of evolving views on NSAIDsMedications used for chronic pain sensitisationLow FODMAP dietary approaches for IBS-like symptoms in quiescent Crohn's diseaseWorking with specialist dietitians to support gut healthGut-directed cognitive behavioural therapy and other psychological therapiesImproving sleep and addressing fatigueAcupuncture and other complementary approachesPelvic floor assessment and therapy where appropriate Dr Sheehan emphasises that effective pain care often requires a multidisciplinary approach involving gastroenterologists, dietitians, psychologists and other specialists working together. Key Message for PatientsOne of the most powerful messages from this episode is that pain remains real, even when tests look normal. Dr Sheehan encourages patients not to feel dismissed if inflammation is under control but symptoms remain. Instead, she advocates for ongoing conversations about symptoms, quality of life and treatment options, highlighting the importance of patient-centred care. Looking AheadDr Sheehan also shares details of upcoming research aimed at identifying which patients are most likely to continue experiencing abdominal pain after their inflammation improves. The hope is that earlier identification will allow clinicians to introduce supportive therapies sooner and improve long-term outcomes for people living with Crohn's disease, ulcerative colitis and other forms of inflammatory bowel disease. If you live with IBD and struggle with ongoing pain, this episode offers reassurance, practical insights and a hopeful look at how understanding of pain in inflammatory bowel disease continues to evolve.Watch Dr Sheehan's IBD School YouTube video on IBD and pain.Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan Mailn this episode of Wrestling the Octopus: The IBD Patient Podcast, Nigel and I speak with Dr Sue Blackwell, whose journey with ulcerative colitis began in 2002 and eventually led her into the world of colorectal research. Sue shares her experiences of severe disease, life-changing surgery, living with a stoma and multiple parastomal hernia repairs, and explains how those experiences inspired her to pursue a PhD and help shape future research for patients.Sue discusses the realities of living with a stoma, why honest conversations matter and how patient perspectives can improve outcomes for people with inflammatory bowel disease. She also explains her work on PROMISE IBD, an innovative study exploring patient-reported outcomes after IBD surgery, designed to put patient-centred care at the heart of research.The conversation also explores obesity, GLP-1 weight loss medications, quality of life after surgery and the importance of involving patients not just as research participants, but as partners in designing and delivering studies.Whether you live with Crohn's disease, ulcerative colitis or a stoma, or you're a healthcare professional interested in improving patient-centred care, this episode offers valuable insights into the power of lived experience and research working together.In this episode:Sue's ulcerative colitis diagnosis and early treatment journeySurgery, colectomy and adapting to life with a stomaUnderstanding parastomal hernias and their impact on quality of lifeWhy patient perspectives matter in healthcare researchHow lived experience inspired Sue's PhD and research careerThe PROMISE IBD study and patient-reported outcomes after surgeryThe growing role of patient-centred care in inflammatory bowel diseaseGLP-1 weight loss medications and their impact on life with a stomaHonest discussions about stoma surgery, internal pouches and shared decision-makingOpportunities for patients to get involved in researchAbout our guestDr Sue Blackwell is a researcher at the University of Birmingham whose work focuses on colorectal surgery, parastomal hernias and patient-reported outcomes. Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailSURVEY LINKWhat topics should our Wrestling the Octopus IBD podcast cover next? In this episode, we review the feedback from our recent podcast survey and discuss how your suggestions will help shape future episodes of this podcast - a show we absolutely love recording!Along the way, I share an update on my treatment with ustekinumab, while Nigel discusses his return to blogging following his recovery from a cystolitholapaxy procedure. Most importantly, this episode highlights the value of listening to the patient experience and ensuring that future content reflects the questions and concerns that matter most to people living with Crohn's disease and ulcerative colitis. We offer honest conversation, practical information and our own very personal patient reflections.Topics discussedSteroids in inflammatory bowel disease and their modern role in treatmentAzathioprine and combination therapiesSmall bowel Crohn's diseaseGLP-1 weight loss medications and IBDLiving with a stomaJoint pain and extra-intestinal manifestationsIntimacy and inflammatory bowel diseaseAdvocacy, diet and IBS in IBDIBD surgery and patient educationFatigue and pain managementThank you to everyone who completed the survey and helped shape the future of Wrestling the Octopus IBD. Your ideas continue to guide the conversations, experts and patient stories featured on our podcast.Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailWhat happens when a future mental health nurse spends 17 years searching for answers before finally being diagnosed with Crohn's disease?In Episode 42 of Wrestling the Octopus IBD, Rachel and Nigel speak with Hakeem, a London-based mental health nurse living with Crohn's disease, about his long and difficult journey to diagnosis, major surgery, life with a temporary stoma, and the lasting psychological impact of living with inflammatory bowel disease (IBD). Hakeem shares how symptoms that began in childhood were repeatedly dismissed as anxiety, leaving him to navigate years of pain, abscesses and worsening illness before finally receiving a diagnosis. He explains the concept of diagnostic overshadowing, where existing mental health labels can influence how healthcare professionals interpret physical symptoms. The conversation explores a life-changing surgical experience, including emergency complications, blood transfusions, an unexpected ileostomy and the challenges of adjusting to life with a stoma. Hakeem speaks candidly about recovery, trauma and the importance of specialist stoma support. Drawing on his professional experience as a mental health nurse, Hakeem also reflects on the often-overlooked relationship between gut health and mental wellbeing. He argues that IBD care should take a more holistic approach, paying greater attention to the emotional impact of living with a chronic condition such as Crohn's disease or ulcerative colitis. The episode also covers career choices, workplace adjustments, patient advocacy and the importance of maintaining an identity beyond illness. Through honest patient reflections and deeply personal patient stories, Hakeem highlights the challenges faced not only by patients but also by their families and loved ones. Whether you live with IBD, Crohn's, Crohn's disease, ulcerative colitis, have undergone surgery, are considering a stoma, or simply want to better understand the emotional realities of chronic illness, this episode offers valuable insight, empathy and hope. In this episode:A 17-year journey to a Crohn's diagnosisDiagnostic overshadowing and delayed diagnosisEmergency bowel surgery and recoveryLiving with a temporary stomaTrauma, PTSD and mental health after surgeryBile acid malabsorption following bowel surgeryBecoming a mental health nurse while living with IBDWhy mental health support should be embedded within gastroenterology servicesSupporting families affected by long-term illnessFinding balance beyond inflammatory bowel diseaseFollow Rachel at @bottomlineibdFollow Nigel at @crohnoid

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

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

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

Send us Fan MailCrohn's patient, Rob returns to speak with us on Wrestling the Octopus: the IBD patient podcast, 12 months after his terminal ileum surgery. He shares an honest, detailed account of the physical and emotional journey of recovery, the realities of adapting to life after surgery, and the milestones that helped him regain confidence and freedom.He talks openly about pain, fear, hypervigilance, bile acid malabsorption, diet changes, medication decisions, stress and the importance of realistic expectations. He also shares the joyful moments that mark his return to normal life, from eating pizza again to weekly pancake dates with his daughter.🧩 Key themesCrohn’s disease recovery and adaptationIBD surgery expectations and mental loadInflammatory bowel disease and long‑term managementUlcerative colitis parallels in surgical recoveryGut health after ileal resectionPatient care and communication with healthcare teams🩺 What Rob shares about the first year after surgery1. The early weeks: pain, exhaustion and slow progressRob describes the first two weeks as physically tough, with significant incision pain, low energy and limited movement. He emphasises that “recovered” means different things at different stages, and that early recovery is rarely straightforward.2. Diet changes and gut adaptationFor the first couple of months, Rob followed a low fibre, slow‑cooked diet to reduce strain on the bowel. He later learned that much of his urgency and loose stools were linked to bile acid malabsorption and the body adjusting to the loss of the terminal ileum.3. The mental side of IBD recoveryRob speaks candidly about hypervigilance, fear of recurrence and overanalysing every symptom. Regular stool tests and clear communication with his gastroenterologist helped him stay grounded.4. The twelve‑month milestoneAt one year post‑op, Rob feels about ninety per cent back to normal. He still experiences occasional urgency and discomfort, but the disease no longer dictates his life.💬 Important insights from the conversationRecovery is not linearA bad bowel day does not mean the surgery has failed or that Crohn’s has returned.Comparison is unhelpfulEvery patient’s body, disease pattern and surgical experience is different.Stay connected to your healthcare teamRob stresses the importance of asking for help, especially in the early months.Medication discipline mattersHe encourages listeners not to abandon treatment after surgery, even when feeling well.Stress affects gut symptomsRob describes how stressful life events triggered functional symptoms that mimicked flare‑ups.🧪 Bile acid malabsorptionRob and Nigel discuss bile acid malabsorption, a common issue after terminal ileum removal. Nigel shares his experience with colesevelam, while Rob describes it as “Crohn’s lite” or “a hint of Crohn’s”, far preferable to active disease.Listeners interested in this topic can revisit episode 15 for a deeper dive.💉 Medication and monitoringRob is currently on Tremfya after other biologics were unsuccessful. He highlights the value of:regular stool testssix‑month colonoscopiesongoing communication with his gastroenterologiststaying on treatment even when feeling wellHis recent colonoscopy showed no inflammation and excellent healing.🍽 Life after surgery: food, freedom and joyRob shares the moment his surgeon told him he could “do whatever you like”, which led to a celebratory pizza and ice cream. He now enjoys:beer and wineweekly homemade curriesMexican foodrunning and gym workoutsnormal social life without toilet anxietyThese moments represent major quality‑of‑life milestones for many people living with Crohn’s disease or ulcerative colitis.🧠 Stress, mindset and emotional resilienceRob explains how stress from family health issues and starting a new business affected his gut. He uses walking, reading outdoors and mindful routines to stay grounded. He encourages listeners to find their own de‑stress strategies and avoid getting stuck in cycles of worry.🏥 Surgery fears and decision‑makingRob contrasts his own readiness for surgery with Nigel’s earlier fear. For Rob, repeated blockages and NG tubes made surgery feel like a relief rather than a threat. He emphasises that understanding the prognosis helped him feel empowered.🌈 Looking aheadRob and his wife are opening WonderHouse, a children’s soft play and café in Pennsylvania. He reflects on how impossible this would have been before surgery and celebrates the return of normal family life.🎧 Suggested follow‑up episodesBile acid malabsorption – Episode 15IBS vs IBD functional symptoms – Episode 37Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid

Send us Fan MailIn our latest episode of Wrestling the Octopus: the IBD Patient Podcast, Nigel and I chat with Professor Peter Irving, IBD consultant at Guy’s & St Thomas’ Hospital in London, about the confusing but incredibly common overlap between irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD).We were keen to record this episode as many IBD patients have an IBS overlap - and it can be devilishly hard to know if you're having an IBD flare or if it's IBS. Professor Irving shares some great tips on this.What IBS Really IsProfessor Irving tells us that IBS is “a disorder of the interaction between the gut and the brain” and requires abdominal pain plus changes in stool form or frequency. It’s now classed as a disorder of gut–brain interaction, not a “functional” problem - a term that often leaves patients feeling dismissed.Why IBS Is More Common in IBDAbout 30–40% of people with Crohn's disease or ulcerative colitis experience IBS‑type symptoms. Reasons include:🔥 Post‑inflammatory sensitivity - like post‑herpetic neuralgia after shingles🌀 Altered motility🧫 Microbiome changes🧠 Psychological stress, which affects gut–brain signallingIBS vs an IBD Flare - How to TellIt’s tricky. Some clues point more toward active IBD:🌙 Nocturnal symptoms🩸 Rectal bleeding⚖️ Weight lossOften though, objective tests are needed:🧪 Calprotectin🖥️ Ultrasound or imaging📹 EndoscopyBile Acid Malabsorption - A Common MimicEspecially in Crohn’s disease affecting the terminal ileum.Testing options include:☢️ SeHCAT scan 💊 Trial of bile acid sequestrantsManaging IBS Symptoms in IBDTreatment depends on symptoms and patient preference:🌿 Antispasmodics (mebeverine, Buscopan)🍃 Peppermint oil (Colpermin)🧉 Ginger🚽 Carefully-supervised loperamide💊 Low‑dose tricyclic antidepressants for pain modulation🧘 Stress‑management and lifestyle support🥗 Dietetic input, which can be transformativeThe Low FODMAP DietProfessor Irving helped bring the low FODMAP diet from Australia to the UK.It reduces fermentable carbohydrates that trigger gas, bloating, and diarrhoea, and can be useful in helping IBD patients to manage their IBS.It’s not meant to be long‑term - it’s a structured tool that helps patients regain control over gut health.A Final ThoughtIBS in the context of IBD is real, common and complex. With the right tests, the right conversations, and the right tools - from diet to medication to lifestyle - patients can feel heard, supported and empowered.Professor Irving also has an IBD podcast of his own - called Digesting - alongside a set of international IBD experts at the BRIDGe Group. Listen here.Follow Rachel at @bottomlineibdFollow Nigel at @crohnoid