What concerns subjects with inflammatory bowel disease and an ileostomy?

Background: The greatest concern of patients with inflammatory bowel disease (IBD) is of having an ileostomy. The aim of this study was to describe worries and concerns in subjects with IBD and an ileostomy, and aspects of quality of life and coping strategies. Methods: 21 subjects with an ileostomy were included, mean age 51, range 36 - 65 ( F/M = 12/9), Crohn disease ( CD) n = 14, ulcerative colitis (UC) n = 6 and indeterminate colitis (IDC) n = 1. Worries and concerns were assessed using the rating form of IBD patient concerns (RFIPC). Health-related quality of life (HRQOL) was assessed using Short Form 36 (SF-36) and compared with a matched group for age and gender from the general population. Subjects' definition of quality of life, as well as perceived quality of life on a visual analogue scale, was evaluated. Coping strategies were investigated using the Jalowiec coping scale (JCS 40). Results: Greatest concerns were related to intimacy, access to quality medical care, energy level, loss of sexual drive, producing unpleasant odours, being a burden, ability to perform sexually, attractiveness and feelings about the body. Vitality was significantly reduced compared to controls. Subjects' definition of good quality of life mainly concerned social dimensions of life and health. Low values on perceived quality of life indicated greater concerns. Confrontational coping style was most frequently used. Conclusion: The greatest concern for subjects with an ileostomy was intimacy. Vitality was reduced compared to controls. Integrating items of concern into counselling may result in greater coping ability and improved quality of life.