Wrestling the Octopus IBD

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Welcome 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]

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: [email protected]
• Twitter/X:
  • Nigel: @Crohnoid
  • Rachel: @BottomLineIBD
• 🔮 Coming Up in 2026
  • Intestinal 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.

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You 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-Out

Have you had TPN? Experienced Metronidazole side effects? Got your own stoma story? We’d love to hear from you. 📧 [email protected]

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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” scan
• What “semi-elective” surgery means and why it matters
• Emotional and practical preparation: writing a will, planning recovery, and managing expectations
• The psychological impact of being treated at St Thomas’ Hospital
• Nigel’s experience with a temporary stoma - from initial shock to newfound confidence
• The challenges of postoperative ileus and nasogastric tubes
• The importance of shared decision-making and asking the right questions
• How 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 resort
• Planning ahead (emotionally, practically, legally) can ease the stress of major treatment
• Hospital environment and staff support play a huge role in recovery
• Temporary stomas can offer unexpected benefits - including confidence and freedom
• Postoperative challenges like ileus are real and difficult, but manageable with support
• A positive surgical experience can reshape your relationship with healthcare
• Ask questions, understand your options, and prepare realistically
• Shared 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.

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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 remission
• The emotional weight of sharing my decision publicly and the need for sensitivity
• The importance of not being labeled “anti-medication” when choosing to de-escalate
• How my consultant’s support helped with the decision
• Life stressors post-withdrawal — bereavement, menopause, moving house - and the surprising lack of impact on my Crohn's disease
• The critical role of monitoring: calprotectin, blood tests, colonoscopy and patient responsibility
• Nigel’s contrasting experience with vedolizumab and the discovery of small bowel inflammation via capsule endoscopy
• The 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 essential
• Coming off medication is not a rejection of medicine, but a personal trial
• Healthcare professionals should be open to discussing drug withdrawal, even if they don’t recommend it
• Life context and support systems are crucial when making treatment decisions
• Monitoring is non-negotiable: calprotectin, bloods, colonoscopy, and patient engagement are key
• Don’t rely solely on how you feel — tests can reveal hidden inflammation
• Patients 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!

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Meet 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 Learn

• How a childhood injury may have shaped Olie’s health trajectory
• The possible link between seronegative arthritis and Crohn’s disease
• Why Olie delayed his first colonoscopy... and what changed his mind
• The impact of NSAIDs on gut health and Crohn’s progression
• Olie’s experience with methotrexate, azathioprine, Humira, infliximab, ustekinumab and Rinvoq
• The overlooked reality of bile acid malabsorption after TI surgery
• How UVB therapy helped resolve a Humira-related skin reaction
• The importance of communication between rheumatology, dermatology and IBD teams

You can follow Olie Bosley on X (@Olski).

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In 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 Cover

• Why the gut might be our “first brain”
• The bidirectional nature of the gut-brain axis
• How inflammation, stress and mood are interconnected
• The vagus nerve’s role in gut-brain communication
• Microbiome diversity and its impact on immunity and mental health
• The influence of lifestyle factors - including pets, sleep and exercise
• Psychological therapies that reduce inflammation and improve IBD outcomes
• Strategies for pain management and building a healthier relationship with discomfort
• The impact of sleep disruption on digestion, mood and inflammation
• How small changes can break the cycle of stress and flare-ups

💡 Key Takeaways

• The 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 Mentioned

• NICE guidelines on first-line treatment for depression
• Research from King’s College London on psychological interventions and inflammatory biomarkers
• Studies on microbiome diversity and depression in IBD
• New York Times article on vagus nerve stimulation

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In 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 misinformation

What You Will Learn

• There’s no one-size-fits-all IBD diet, but there are patterns worth exploring
• Ultra-processed foods and certain emulsifiers may play a role in inflammation
• Prebiotics (like onions, garlic, pulses) can be beneficia but also bloating triggers
• Probiotics may help some people with UC, but evidence is mixed and costs can be high
• If you’re in remission but still sensitive, it might be functional symptoms but not active inflammation
• For stoma care: chew well, watch fizzy drinks and caffeine and consider a gentle food challenge process
• With strictures, insoluble fibre may need to be reduced or blended though soluble fibre can still help
• If it sounds too good to be true, it probably is - so always check with your clinical team
• The benefits of using food diaries

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In 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 Episode

What 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 Points

• BAD 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.

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Every 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 Episode

• The difference between iron deficiency and anaemia
• Why normal haemoglobin doesn’t rule out iron deficiency
• How low ferritin affects energy, cognition and mental health
• The surprising overlap between iron deficiency and ADHD-like symptoms
• Why menstruating women with IBD face a “double whammy” of iron loss
• The pros and cons of oral iron vs. intravenous iron infusions
• What to expect before, during and after an iron infusion
• How iron deficiency can mimic anxiety, fatigue and brain fog
• Why IBD patients often “normalise the abnormal”—and how iron treatment can address this problem and restore quality of life

IBD & Iron

IBD 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/

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Welcome 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!

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