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Living with pain is a common and debilitating aspect of inflammatory bowel disease (IBD), including Crohn's disease and ulcerative colitis. In this episode of Wrestling the Octopus IBD, we are joined by Dr Jessica Sheehan, IBD specialist at the University of Michigan Health in Ann Arbor. She gives us excellent advice on how IBD patients can manage pain.

Dr Sheehan explains that abdominal pain does not always mean your IBD is flaring. While active inflammation can certainly cause pain, symptoms may also arise from complications such as strictures, infections, fistulas or changes in how the gut and nervous system process pain signals.

A major focus of the discussion is visceral hypersensitivity and central sensitisation, where the gut and brain become more sensitive to pain after repeated periods of inflammation. This can leave some people with significant symptoms despite normal tests and well-controlled disease. [

The conversation also challenges common misconceptions about pain in Crohn's and ulcerative colitis. Dr Sheehan explains that the gastrointestinal tract contains an extensive nervous system and that pain can result from stretching, distension, gas and other stimuli, not just active inflammation.

Pain Management Options Discussed

The episode explores a range of pain management approaches, including:

• Treating underlying inflammation where present
• Appropriate use of paracetamol and discussion of evolving views on NSAIDs
• Medications used for chronic pain sensitisation
• Low FODMAP dietary approaches for IBS-like symptoms in quiescent Crohn's disease
• Working with specialist dietitians to support gut health
• Gut-directed cognitive behavioural therapy and other psychological therapies
• Improving sleep and addressing fatigue
• Acupuncture and other complementary approaches
• Pelvic floor assessment and therapy where appropriate

Dr Sheehan emphasises that effective pain care often requires a multidisciplinary approach involving gastroenterologists, dietitians, psychologists and other specialists working together.

Key Message for Patients

One of the most powerful messages from this episode is that pain remains real, even when tests look normal. Dr Sheehan encourages patients not to feel dismissed if inflammation is under control but symptoms remain. Instead, she advocates for ongoing conversations about symptoms, quality of life and treatment options, highlighting the importance of patient-centred care.

Looking Ahead

Dr Sheehan also shares details of upcoming research aimed at identifying which patients are most likely to continue experiencing abdominal pain after their inflammation improves. The hope is that earlier identification will allow clinicians to introduce supportive therapies sooner and improve long-term outcomes for people living with Crohn's disease, ulcerative colitis and other forms of inflammatory bowel disease.

If you live with IBD and struggle with ongoing pain, this episode offers reassurance, practical insights and a hopeful look at how understanding of pain in inflammatory bowel disease continues to evolve.

Watch Dr Sheehan's IBD School YouTube video on IBD and pain.

Follow Rachel at @bottomlineibd

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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 journey
• Surgery, colectomy and adapting to life with a stoma
• Understanding parastomal hernias and their impact on quality of life
• Why patient perspectives matter in healthcare research
• How lived experience inspired Sue's PhD and research career
• The PROMISE IBD study and patient-reported outcomes after surgery
• The growing role of patient-centred care in inflammatory bowel disease
• GLP-1 weight loss medications and their impact on life with a stoma
• Honest discussions about stoma surgery, internal pouches and shared decision-making
• Opportunities for patients to get involved in research

About 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

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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 treatment
• Azathioprine and combination therapies
• Small bowel Crohn's disease
• GLP-1 weight loss medications and IBD
• Living with a stoma
• Joint pain and extra-intestinal manifestations
• Intimacy and inflammatory bowel disease
• Advocacy, diet and IBS in IBD
• IBD surgery and patient education
• Fatigue and pain management

Thank 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