Wrestling the Octopus IBD

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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.

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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 conditions
• When the risk of thrombosis is highest in inflammatory bowel disease: flares, hospital admissions, surgery and long periods of immobility
• How to reduce your clot risk in everyday life: movement, travel tips, smoking, weight, hormones and looking after your general gut health
• What to ask your hospital team about clot prevention if you’re admitted or having an operation
• Red flag symptoms that should make you seek urgent medical help
• The impact of modern biologics and other IBD medicines on clot risk
• Women’s health: contraception, HRT, iron deficiency and how to make safer choices if you live with IBD

Nigel 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.

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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.

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Did you know that up to 30% of people living with inflammatory bowel disease (IBD) will have abnormal liver tests at some point?

In this episode of Wrestling the Octopus IBD, Nigel and I are joined by two expert hepatologists from Guy's and St Thomas' Hospital in London to explore the link between IBD and liver disease - what causes it, what to look out for and how it's monitored.

Our Guests

Dr. Sreelakshmi (Sree) Kotha – Hepatology Consultant and Clinical Lead for Endoscopy, St. Thomas' Hospital, London.

Dr. Phil Berry – Consultant Gastroenterologist and Hepatologist, Guy's and St. Thomas' Hospital. Special interest in medical ethics and patient safety. Co-author of PSC: Voices, Journeys and Challenges.

Why Does IBD Affect the Liver?

IBD - including Crohn's disease and ulcerative colitis - is an autoimmune condition, and that autoimmune activity doesn't always stay confined to the gut. Liver involvement is more common than many patients realise. The main causes of abnormal liver tests in IBD include:

• Fatty liver disease - linked to high BMI or long-term steroid use
• Medication reactions - IBD treatments such as methotrexate, azathioprine and biologics can all affect liver function
• Autoimmune hepatitis - where the immune system attacks liver cells
• Gallstones - Crohn's disease affects how the body processes bile acids, increasing the risk
• Primary sclerosing cholangitis (PSC) - a serious bile duct condition closely linked to IBD.

Key facts about PSC:

• Around 70–80% of people with PSC also have IBD
• PSC is more common in ulcerative colitis (affecting 3–8% of patients) than in Crohn's disease (1–3%)
• Treating IBD, even very successfully, does not appear to slow PSC — the two conditions can progress independently of each other
• PSC is a lifelong condition requiring ongoing monitoring

Symptoms to Watch For

Early liver disease often causes no obvious symptoms, which is why routine blood tests matter. As things progress, patients may notice:

• Persistent fatigue and tiredness (though this can overlap with IBD symptoms)
• Jaundice - yellowing of the eyes or skin
• Fevers, chills and rigors - signs of bile duct infection
• Abdominal pain, particularly on the right side

Gallstones and Crohn's Disease

Crohn's disease carries a slightly higher risk of gallstones due to changes in how bile acids are processed in the gut. Because gallstones are common in the general population and the treatment (gallbladder removal) is the same regardless of cause, the Crohn's connection isn't always explored - but it's worth raising with your team if you have symptoms.

When Should You Seek Help?

Managing IBD alongside liver disease, gallstones or other complications can make it hard to know who to contact when something feels wrong. A few practical pointers:

• Severe abdominal pain with fever, vomiting or chills - call 111 or go to A&E
• Grumbling, uncertain symptoms - contact your gastroenterology team via 

Mentioned in This Episode

• PSC: Voices, Journeys and Challenges - co-authored by Dr. Sree Kotha and Dr. Phil Berry
• Necessary Scars - by Dr. Phil Berry, exploring how medical professionals cope with mistakes

Get in Touch

Have a topic you'd like us to cover? Email us at [email protected]

All previous episodes are available wherever you listen to podcasts.

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We can hardly believe it's been 12 whole months since we started this podcast on patients' reflections on living with inflammatory bowel disease.

Happy first birthday, Wrestling the Octopus IBD!

During this year, we have spoken with fellow patients and also healthcare professionals to further patient education on Crohn's disease and ulcerative colitis.

We are indebted to all our guests for donating their time so generously, but also to all of you, our listeners, for your supportive comments as we bring our patient experience to the podcast airwaves.

In this episode, Nigel and I reflect on our first year of podcasting - with a few conversation tangents thrown in for good measure!

Hope you enjoy listening...

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The fear of developing colorectal cancer (CRC) when living with inflammatory bowel disease can weigh heavily on our minds as patients.

So Nigel and I resolved to get an expert guest on the podcast who could talk us (and our patient listeners) through the risks and how we can minimise them when living with Crohn's disease or ulcerative colitis.

Enter Professor James East! Prof East is a consultant gastroenterologist at the John Radcliffe Hospital in Oxford, UK and lead author of the British Society of Gastroenterology's updated guidelines.

Here's a summary of what we discussed in this episode:

GOOD NEWS FIRST
• Bowel cancer risk in IBD has fallen dramatically over the past 20 years
• Current risk: 1.4–1.7 times the general population (much lower than older estimates)
• In numbers: 75 in 1,000 IBD patients vs 50 in 1,000 general population

KEY RISK FACTORS
• Inflammation severity and disease extent (biggest drivers)
• "Smouldering" inflammation counts—even without symptoms
• Family history of bowel cancer (first-degree relative)
• Post-inflammatory polyps (markers of past severe inflammation)
• Primary sclerosing cholangitis (PSC)—annual surveillance needed from diagnosis
• Most patients start surveillance 8 years after symptom onset

YOUR MEDICATIONS PROTECT YOU
• Mesalazine and biologics (especially anti-TNFs) reduce cancer risk
• Benefits of controlling inflammation outweigh theoretical immune concerns
• Keep taking your treatment

SURVEILLANCE COLONOSCOPY
• Frequency: every 1–3 years depending on individual risk
• Well-controlled disease: may only need every 10 years
• First surveillance: typically 8 years after symptom onset (earlier with PSC or severe early disease)

MAKING COLONOSCOPY MORE TOLERABLE
• Lower-volume bowel prep (2 litres or less) now recommended—just as effective
• Options: Moviprep, Plenvu, Citrafleet, Picolax
• Generous sedation recommended for IBD patients
• Propofol deep sedation should be available if needed

LIFESTYLE CHANGES THAT HELP
• Stop smoking
• Maintain healthy weight
• Regular exercise
• Mediterranean-style diet: less red/processed meat, more fish, fruit, vegetables, olive oil

RED FLAGS—SEEK URGENT ADVICE FOR:
• Bleeding without diarrhoea
• Symptoms not responding to usual treatment
• Significant weight loss
• Severe pain or abdominal lump
• Anything that feels different from your normal IBD pattern

FUTURE DEVELOPMENTS
• Stool-based biomarker tests to reduce colonoscopy frequency
• AI technology for detecting precancerous changes
• Genetic tests to guide treatment decisions

Remember: surveillance offers protection and promotes good gut health. Early detection of precancerous changes prevents cancer; early cancer detection means cure is possible.

Nigel and I would like to thank Professor East sincerely for donating his time for the promotion of patient education in this important area.

Here is the link to the online colorectal cancer risk calculator mentioned in the episode: https://ibd-dysplasia-calculator.bmrc.ox.ac.uk/

Here is the link to the British Society of Gastroenterology's updated guidelines on colorectal cancer risk in IBD: https://www.bsg.org.uk/clinical-resource/bsg-guidelines-on-colorectal-surveillance-in-ibd

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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 risk
• Crohn's disease patients: No significant meat association found
• No consistent links: Ultra-processed foods, fibre, alcohol and fats didn't show the expected connections to flares across either condition

These 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.

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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 life
• Why 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

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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.

1. Why Patients Are Referred for Surgery

Raj explains the two main pathways:

• Elective referrals
  • Failure of medical therapy
  • Persistent symptoms (urgency, bleeding, weight loss, malnutrition)
  • Pre‑cancerous changes or cancer found on surveillance colonoscopy
• Emergency referrals
  • Severe inflammation
  • Bleeding
  • Perforation

2. “Can I choose surgery instead of medication?”

Some patients doing well on medication may still prefer surgery. Raj explains:

• This is not a routine pathway
• Decisions are individualised
• Crohn’s patients will still need maintenance therapy after surgery

3. Fear of Surgery & Fear of Stomas

A major theme of the episode.

Raj discusses:

• How stoma decisions are made before surgery, not as a surprise
• The role of stoma nurses, psychologists and IBD teams in preparing patients
• Why emergency surgery often requires a temporary stoma

4. Common Misconceptions

The biggest one?

Raj explains why this is not true, and how decisions depend on:

• Disease location
• Nutritional status
• Steroid use

He 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 operation
• What the surgery involves

He 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 surgery
• Emergency surgery usually involves total colectomy, leaving the rectum
• Reasons 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 laparoscopically
• A pouch is made from small bowel to mimic rectal function
• Outcomes vary:
  • ~50% have excellent function
  • ~50% have more challenging function

8. Preparing for Elective Surgery

Patients may be advised to:

• Optimise nutrition
• Taper steroids
• Stop smoking

9. Hospital Stay & Recovery

Typical expectations:

• Enhanced recovery programme
• Drinking on day 1, light food on day 2
• Early mobilisation

Raj 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 earlier
• Many are surprised by how much better they feel
• Some who had emergency surgery and complications question the timing

If you have questions for future surgical episodes or topics you’d like covered:

📧 [email protected]

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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 colitis
• Performed 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 societies

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