P097. Experiences of faecal incontinence in people with inflammatory bowel disease (IBD)
L. Dibley1, C. Norton1
1Bucks New University, Faculty of Society & Health, London, United Kingdom
Background: IBD affects millions of people in the Western World. There is little understanding of the experiences of living with IBD-related faecal incontinence (FI), although it is known to be a major area of concern to patients (1). As part of a large mixed-methods two-phase study, we aimed to understand the experiences and concerns of people who endure IBD-related incontinence.
Methods: We randomly sampled 10,000 members of Crohn's & Colitis UK (n = 3264 respondents) who met the study criteria. In phase 1, all consenting respondents completed a compound questionnaire to provide demographic information, disease and medical history, continence status, quality of life data, and free text responses to 8 questions about incontinence. In phase 2, 28 people participated in individual semi-structured interviews.
This paper presents findings from the Phase 1 free text responses. 636 sets of data were transcribed, continuing until no new themes emerged. Data were sorted and analysed using a pragmatic thematic approach (2). Both authors individually identified themes and generated codes, before collaborating to agree on final themes and sub-themes.
Results: Several core themes and associated sub-themes emerged from the data. Core themes were:
Emotional & psychological impact
Feelings of stigma
Practical coping mechanisms
Access to facilities
Fear of incontinence
Incontinence, and fear of it, limits social, working and personal lives, impacting on people in complex ways. Key strategies, including situation avoidance, are used to try and cope. Incontinence is degrading and humiliating. People are often too embarrassed to ask for help but the most desired help was for the opportunity to access professional or lay talking therapies. The quality of professional support (GP, hospital consultant, specialist IBD/continence nurse) varies across the country.
Conclusions: IBD-related incontinence and fear of incontinence, regardless of disease status, cause a web of difficulties for the experiencing person. People with IBD-related FI need help in accessing sympathetic and helpful professional support.