Pain experience of people with inflammatory bowel disease: a qualitative study

People with inflammatory bowel disease (IBD) commonly experience pain, whether during active disease or remission, which interferes with daily life and major goals and causes distress. Current psychological methods of pain management draw from musculoskeletal pain interventions, but it has not been established that the musculoskeletal model is a good fit. We aimed to outline a psychological model of IBD pain.

We used qualitative methods: a very open interview (Grid Elaboration Method), conducted online and transcripts analysed for themes and subthemes. 15 men and 15 women with IBD pain, recruited from a national charity, took part in 4 months to February 2024. Participants scored their average pain 5/10 and interference by pain with activity 6/10, where 10 is maximum pain or interference.

We extracted five inter-related themes: on the emotional impact of pain and symptoms; the challenge of pain; restrictions due to pain and other IBD symptoms; shortcomings in healthcare, particularly for pain; and poor public understanding of IBD. Although the first theme, universally endorsed, covered anxiety about the meaning of pain, we did not find the fears about physical integrity that characterise much musculoskeletal pain, nor the avoidance of physical activities based on those fears.

We propose that further exploration is warranted of the experience of IBD-related pain and how people adjust to it. This will inform the design of better psychologically-informed interventions to help people with IBD manage their pain, independently and in partnership with healthcare.