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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.

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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

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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

Follow Rachel at @bottomlineibd

Follow Nigel at @crohnoid