Background: Poor bowel control is a major concern of people with inflammatory bowel disease (IBD). Previous research demonstrates the impact of fecal incontinence (FI) on adults in the non-IBD population; there are no previous reports on the experience of IBD-related FI.
Methods: We randomly sampled 10,000 members of Crohn's & Colitis UK to receive a questionnaire to collect demographic information, medical history, continence status, quality of life, and free-text responses to questions about FI. Respondents could also choose to be interviewed about their experiences of living with IBD-related FI. This article presents findings from the free-text paper questionnaire responses and the interviews. Following transcription, data were sorted and analyzed using a pragmatic thematic approach.
Results: We received 3264 eligible replies (32.6%). Twenty-eight interviews and 583 sets of questionnaire data were transcribed, continuing with the latter until no new themes emerged. The remaining questionnaires (n = 2681) were read to check that no issues had been missed. Several core themes emerged: emotional and psychological impact, feelings of stigma, limited lives, symptoms, practical coping mechanisms, access to facilities, and fear of incontinence.
Discussion: Incontinence, and fear of it, limits social, working, and personal lives, impacting on people with IBD in complex ways. Key strategies, including situation avoidance and dietary restrictions, are used to cope. Incontinence is degrading and humiliating for most people, although a small number approach their situation positively.
Conclusions: IBD-related FI, and fear of incontinence, causes multiple difficulties. People with IBD-related FI need help in accessing professional support.