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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

Follow Nigel at @crohnoid