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Help-Seeking for Fecal Incontinence in People With Inflammatory Bowel Disease

PURPOSE: The purpose of this study was to enhance our understanding of factors that influence help-seeking in people with inflammatory bowel disease (IBD)–related fecal incontinence (FI), and their needs or desire for continence services. SUBJECTS AND SETTING: We conducted a survey of FI in community-dwelling people with IBD, all members of a United Kingdom IBD charity, and received 3264 responses. As part of the study, we asked 3 questions about help-seeking for IBD-related FI to which respondents were able to give free-text responses. We analyzed the responses to these help-seeking questions, continuing until data saturation when no new themes emerged (617 free text comments analyzed, 19% of total respondents). METHODS: For the full survey, a mixed-methods design was used to collect and analyze quantitative and qualitative data. Qualitative (free-text) responses relating to help-seeking behavior reported in this article were analyzed using a pragmatic thematic approach. RESULTS: Seventy-four percent of the total sample (2415 out of 3264 respondents) reported some degree of FI. Of these, only 38% (n = 927) reported seeking help for FI. In the data reported in this article (n = 617), only 13.5% reported seeking help for FI. Help was described as satisfactory, unsatisfactory, or alternative (acupuncture, counseling, hypnotherapy). Reasons for not seeking help included believing nothing could be done, not knowing who to ask, feeling too embarrassed, ashamed or dirty, and perceived lack of interest, sympathy, or understanding from health care professionals. Although respondents wanted to talk to “someone with specialist knowledge about incontinence” only 6 out of 617 (0.9%) reported awareness of specialist continence services. Standard treatments were rarely mentioned (n = 2). Respondents' focus was on better management of FI rather than on cure. CONCLUSIONS: Many people with IBD-related FI are not aware of the services or treatments that are available to help them manage this distressing problem, and most do not seek help, often due to embarrassment and lack of knowledge that help might be possible. Clinical staff could communicate their awareness for the potential for FI to occur by proactively asking about symptoms during clinic appointments to provide an opportunity for symptoms to be disclosed and described.