Wrestling the Octopus IBD

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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 diagnosis
• Diagnostic overshadowing and delayed diagnosis
• Emergency bowel surgery and recovery
• Living with a temporary stoma
• Trauma, PTSD and mental health after surgery
• Bile acid malabsorption following bowel surgery
• Becoming a mental health nurse while living with IBD
• Why mental health support should be embedded within gastroenterology services
• Supporting families affected by long-term illness
• Finding balance beyond inflammatory bowel disease

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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 disease
• When to contact your GP, IBD team or A&E
• Blood tests, stool tests and faecal calprotectin
• Vaccinations and biologic medicines
• Bone health and osteoporosis risk
• Patient portals and healthcare communication
• AI in healthcare letters
• Preparing for consultations
• Managing 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 tests
• Anaemia and nutritional deficiency screening
• Faecal calprotectin tests
• Stool tests to rule out infection
• Certain scans and investigations
• DEXA scans for bone health assessment

When to seek urgent help

Go to A&E if you develop:

• Severe or rapidly worsening abdominal pain
• Abdominal swelling or distension
• Fever with gastrointestinal symptoms
• Possible 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 vaccine
• COVID vaccine
• Pneumococcal 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 frequency
• Usual symptoms
• Current medications
• Previous test results and treatments

Being 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 letters
• Test results
• Appointment details
• Treatment information

Having 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.

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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!

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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.

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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 adaptation
• IBD surgery expectations and mental load
• Inflammatory bowel disease and long‑term management
• Ulcerative colitis parallels in surgical recovery
• Gut health after ileal resection
• Patient 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 tests
• six‑month colonoscopies
• ongoing communication with his gastroenterologist
• staying on treatment even when feeling well

His 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 wine
• weekly homemade curries
• Mexican food
• running and gym workouts
• normal social life without toilet anxiety

These 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 15
• IBS vs IBD functional symptoms – Episode 37

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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 signalling

IBS vs an IBD Flare - How to Tell

It’s tricky. Some clues point more toward active IBD:

• 🌙 Nocturnal symptoms
• 🩸 Rectal bleeding
• ⚖️ Weight loss

Often though, objective tests are needed:

• 🧪 Calprotectin
• 🖥️ Ultrasound or imaging
• 📹 Endoscopy

Bile Acid Malabsorption - A Common Mimic

Especially in Crohn’s disease affecting the terminal ileum.
Testing options include:

• ☢️ SeHCAT scan 
• 💊 Trial of bile acid sequestrants

Managing 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 transformative

The 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.

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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 stones
• An enlarged prostate
• An upcoming OGD with ultrasound to assess his pancreas
• Ongoing issues with low platelets and splenomegaly

This 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 nurses
• How patient experience varies widely across the UK

The 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 train

They 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 colonoscopies
• Medication experiences
• Surgery recovery
• Difficulty accessing consultants
• The value of peer support

We also discuss how digital tools like MyChart can both empower and overwhelm patients.

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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.

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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.

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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.

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