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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

Follow Rachel at @bottomlineibd

Follow Nigel at @crohnoid

#38 From Birkenhead to Philadelphia: an update on Rob's IBD story, a year after his surgery

Wrestling the Octopus IBD

#38 From Birkenhead to Philadelphia: an update on Rob's IBD story, a year after his surgery