N26 Experiences of patients with inflammatory bowel disease (IBD) regarding faecal incontinence and the guidance received

Abstract

Background Patients with inflammatory bowel disease (IBD) suffer more often than the rest of the population from faecal incontinence, which decreases their quality of life. The purpose of this study was to describe the experiences of Finnish IBD patients regarding faecal incontinence and the guidance they need and have received for faecal incontinence. Methods The data were collected by executing focused interviews of eleven IBD patients, who at the time of the interview were in remission. The interviewees participated in the study via the Finnish patient association Crohn ja Colitis ry. The data were analysed using an inductive content analysis. Results Seven participants were men and four were women. They had had IBD for an average of 2 to 40 years. Five interviewees had Crohn’s disease and six had ulcerative colitis. The extent of the faecal incontinence and its impact on quality of life were assessed by Jorge–Wexner score, which examines the frequency of solid and loose stools and intestinal gas, use of diapers or protective pads, and the patients’ perception of the impact on the quality of life. Zero points stands for complete continence and 20 points for complete incontinence. The average Wexner score among participants was 9.8 (Figure 1). The participants felt that faecal incontinence was constantly disturbing their life. They especially wished for support and information regarding diet. Fear of faecal incontinence made participants skip planned activities and isolate themselves at home. Participants tried to anticipate bowel movements and find out toilet locations in advance in order to venture out of their homes. Participants had discussed faecal incontinence with an IBD nurse and a doctor, but none had met a continence nurse. Furthermore, none of the participants had been told about potential faecal incontinence or ways to manage it. Some participants felt that diet had improved their bowel function, although health care personnel had said in their guidance that diet has no effect on faecal incontinence. Participants also felt that they would have needed information regarding the risk of faecal incontinence and wished that they had been heard regarding problems caused by faecal incontinence. Conclusion IBD patients need guidance from health care personnel and information regarding faecal incontinence to balance their bowel function. Health care personnel taking care of IBD patients in Finland needs more training on faecal incontinence, and in addition, more guidance and criteria on when to direct a patient to a continence nurse is needed.