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Send us Fan Mail n 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 guest Dr 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 @bottomlineibd Follow Nigel at @crohnoid

Send us Fan Mail SURVEY LINK What 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 discussed Steroids 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 @bottomlineibd Follow Nigel at @crohnoid

Send us Fan Mail What 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 @bottomlineibd Follow Nigel at @crohnoid

Send us Fan Mail Welcome to Episode 41 of Wrestling the Octopus IBD. This time, we're talking primary care and inflammatory bowel disease - how to get the best from your GP when treating your IBD and how we as Crohn's disease and ulcerative colitis patients can help too. Our guest is north London GP, Dr Lindsay Samaan. She tells us how GPs can help IBD patients with everything from flare symptoms and investigations ,to vaccinations and bone health,. Our discussion highlights the importance of collaborative, patient-centred care. Topics covered The role of the GP in inflammatory bowel 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 takeaways Your GP can do more than you might think! GPs are often the best first point of contact when symptoms change. They can help determine whether symptoms are related to IBD or another condition and arrange many initial investigations. They also take a broader view of health, helping to manage other medical conditions, mental wellbeing and overall health needs. Investigations available in primary care Your GP can often arrange: Blood testsAnaemia and nutritional deficiency screeningFaecal calprotectin testsStool tests to rule out infectionCertain scans and investigationsDEXA scans for bone health assessment When to seek urgent help Go 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 health People with inflammatory bowel disease who have received repeated steroid treatment may be at increased risk of osteoporosis. Your GP can arrange DEXA scanning and provide advice on vitamin D, resistance exercise and lifestyle measures to help protect bone health. Know your baseline One of Dr Samaan's biggest tips is to understand what is normal for you: Typical bowel 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 portals Hospital 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 thought Good patient-centred care relies on partnership. While your specialist team manages treatments such as biologics, your GP can help with investigations, monitoring, vaccinations, mental wellbeing, bone protection and wider gut health concerns. Understanding your own condition and communicating changes clearly can help you get the most from every consultation. We vow to keep our podcast non-commercial: this means no ads and no sponsorship. If you enjoy what you hear, please pay it forward by telling other IBD patients or healthcare professionals about our podcast. Please also consider subscribing and rating us on your podcast platform. Thank you. Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

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

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

Send us Fan Mail Crohn's patient, Rob returns to speak with us on Wrestling the Octopus: the IBD patient podcast, 12 months after his terminal ileum surgery. He shares an honest, detailed account of the physical and emotional journey of recovery, the realities of adapting to life after surgery, and the milestones that helped him regain confidence and freedom. He talks openly about pain, fear, hypervigilance, bile acid malabsorption, diet changes, medication decisions, stress and the importance of realistic expectations. He also shares the joyful moments that mark his return to normal life, from eating pizza again to weekly pancake dates with his daughter. 🧩 Key themes Crohn’s disease recovery and 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 surgery 1. The early weeks: pain, exhaustion and slow progress Rob describes the first two weeks as physically tough, with significant incision pain, low energy and limited movement. He emphasises that “recovered” means different things at different stages, and that early recovery is rarely straightforward. 2. Diet changes and gut adaptation For the first couple of months, Rob followed a low fibre, slow‑cooked diet to reduce strain on the bowel. He later learned that much of his urgency and loose stools were linked to bile acid malabsorption and the body adjusting to the loss of the terminal ileum. 3. The mental side of IBD recovery Rob speaks candidly about hypervigilance, fear of recurrence and overanalysing every symptom. Regular stool tests and clear communication with his gastroenterologist helped him stay grounded. 4. The twelve‑month milestone At one year post‑op, Rob feels about ninety per cent back to normal. He still experiences occasional urgency and discomfort, but the disease no longer dictates his life. 💬 Important insights from the conversation Recovery is not linear A bad bowel day does not mean the surgery has failed or that Crohn’s has returned. Comparison is unhelpful Every patient’s body, disease pattern and surgical experience is different. Stay connected to your healthcare team Rob stresses the importance of asking for help, especially in the early months. Medication discipline matters He encourages listeners not to abandon treatment after surgery, even when feeling well. Stress affects gut symptoms Rob describes how stressful life events triggered functional symptoms that mimicked flare‑ups. 🧪 Bile acid malabsorption Rob and Nigel discuss bile acid malabsorption, a common issue after terminal ileum removal. Nigel shares his experience with colesevelam, while Rob describes it as “Crohn’s lite” or “a hint of Crohn’s”, far preferable to active disease. Listeners interested in this topic can revisit episode 15 for a deeper dive. 💉 Medication and monitoring Rob is currently on Tremfya after other biologics were unsuccessful. He highlights the value of: regular stool 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 joy Rob shares the moment his surgeon told him he could “do whatever you like”, which led to a celebratory pizza and ice cream. He now enjoys: beer and 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 resilience Rob explains how stress from family health issues and starting a new business affected his gut. He uses walking, reading outdoors and mindful routines to stay grounded. He encourages listeners to find their own de‑stress strategies and avoid getting stuck in cycles of worry. 🏥 Surgery fears and decision‑making Rob contrasts his own readiness for surgery with Nigel’s earlier fear. For Rob, repeated blockages and NG tubes made surgery feel like a relief rather than a threat. He emphasises that understanding the prognosis helped him feel empowered. 🌈 Looking ahead Rob and his wife are opening WonderHouse, a children’s soft play and café in Pennsylvania. He reflects on how impossible this would have been before surgery and celebrates the return of normal family life. 🎧 Suggested follow‑up episodes Bile acid malabsorption – Episode 15IBS vs IBD functional symptoms – Episode 37Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

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

Send us Fan Mail In this candid episode of Wrestling the Octopus: The IBD Patient Podcast, Rachel and Nigel dive deep into the lived reality of IBD (inflammatory bowel disease) - from emergency symptoms to complex procedures, new medications, bowel prep dilemmas and the importance of patient‑centred care. Nigel’s Recent Medical Rollercoaster Nigel recounts a frightening episode of passing blood while urinating - which led to A&E, scans, and ultimately a cystoscopy.  He also discusses: Kidney stonesAn enlarged prostateAn upcoming OGD with ultrasound to assess his pancreasOngoing issues with low platelets and splenomegalyThis segment highlights how Crohn’s disease and long‑term treatment can intersect with other health conditions, complicating the picture of gut health and overall wellbeing. Rachel’s Treatment Update Rachel prepares to start ustekinumab (a biosimilar: Wezenla) for Crohn’s disease: She also discusses: Pre‑biologic screening The value of regular contact with IBD nursesHow patient experience varies widely across the UKThe Great Bowel Prep Debate Listeners wrote in asking about split‑dose bowel prep—especially when the second dose must be taken hours before an early‑morning colonoscopy. Rachel and Nigel share their own strategies: Nigel: would take the second dose the night before (but stresses this is personal, not medical advice)Rachel: prefers setting an early alarm to avoid bowel prep “activating” on the trainThey also reflect on how bowel prep is often worse than the colonoscopy itself: . The Power—and Pitfalls—of Patient Communities Rachel and Nigel explore what they see in online IBD groups: Anxiety around colonoscopiesMedication experiencesSurgery recoveryDifficulty accessing consultantsThe value of peer supportWe also discuss how digital tools like MyChart can both empower and overwhelm patients. Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

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

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

Send us Fan Mail In Episode 33 of Wrestling the Octopus IBD, Rachel chats with Nigel about her feelings on getting inflammatory bowel disease symptoms after 15 years of Crohn's remission - the last five years being without drugs. Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

Send us Fan Mail In Episode 32 of Wrestling the Octopus: The IBD Patient Podcast, we meet Crohn's disease patient, Neil Barker. Neil recounts his history of living with IBD, bowel and brain cancer. His story offers an honest, deeply human look at what it means to manage a chronic illness while trying to maintain hope, identity and everyday life. Neil reflects on the early signs of Crohn's, the long road to diagnosis, and the emotional and physical toll of living with unpredictable symptoms. He shares how IBD shaped his relationship with food, work and social life, and how he learned to advocate for himself within the healthcare system. Hear Neil's practical insights on managing gut health, coping with flare ups and finding support. Our discussion then moves into Neil’s experience with bowel cancer, including how his IBD history influenced detection, treatment and recovery. He speaks candidly about the shock of later developing brain cancer, the resilience required to face multiple life altering diagnoses, and the importance of community when navigating long-term illness. Whether you live with inflammatory bowel disease, support someone who does, or want to better understand the complexities of Crohn's, ulcerative colitis and cancer, this episode offers compassion, clarity and connection. Follow Neil on Instagram @bigwoofa_agus_siarach Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

Send us Fan Mail Blood clots are not the first thing most people think of when they hear Crohn’s disease or ulcerative colitis - but they should be on the radar of each one of us living with inflammatory bowel disease. This episode of Wrestling the Octopus IBD dives into clots and thrombosis in inflammatory bowel disease. Our guest is Professor Beverley Hunt OBE, consultant in thrombosis and haemostasis at Guy’s and St Thomas’ Hospital in London, UK. She joins us to explain why IBD increases clot risk, what this means for our gut and overall health, and what, as Crohn's and ulcerative colitis patients, we can practically do to protect ourselves. We cover: What a blood clot actually is, and the difference between deep vein thrombosis (DVT), pulmonary embolism (PE) and more unusual clots like portal vein thrombosis (PVT) and superior mesenteric vein thrombosis (SMVT)Why people with Crohn's disease and ulcerative colitis have a higher risk of clots - including the role of inflammation, “sticky blood” and autoimmune conditionsWhen the risk of thrombosis is highest in inflammatory bowel disease: flares, hospital admissions, surgery and long periods of immobilityHow to reduce your clot risk in everyday life: movement, travel tips, smoking, weight, hormones and looking after your general gut healthWhat to ask your hospital team about clot prevention if you’re admitted or having an operationRed flag symptoms that should make you seek urgent medical helpThe impact of modern biologics and other IBD medicines on clot riskWomen’s health: contraception, HRT, iron deficiency and how to make safer choices if you live with IBDNigel also shares his experience of living with portal and mesenteric vein clots and portal hypertension from a patient perspective. This episode is for anyone with Crohn’s or ulcerative colitis who has ever wondered, “Am I at risk of a clot - and how would I even know?” Our aim is not to frighten you, but to give you clear, sensible information so you can feel more confident advocating for yourself. If you find this useful, please consider leaving a rating or review, and share it with someone else living with inflammatory bowel disease. The more people understand about clots, thrombosis and IBD, the safer our community becomes. Follow Thrombosis UK. Follow Rachel at @bottomlineibd Follow Nigel at @crohnoid

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