Thirty years of experience living with a continent ileostomy - Bad restrooms - Not my reservoir - Decide my life

OBJECTIVE: This study describes long-term adjustment of people with a continent ileostomy. SUBJECTS AND METHODS: Subjects were 68 people (25 males and 43 females) who underwent an operation for ulcerative colitis with a continent ileostomy (Kock pouch). The median number of years subjects had lived with a continent reservoir was 31 (range 29-36) at follow-up and the median subject age was 60 (40-89). Subjects completed a 36-item questionnaire designed to assess adjustment to ostomy surgery. Subjects ranked the questionnaire using a 6-point Likert scale; a response alternative "not relevant" was available. Content analysis was conducted on subjects' responses to an open-ended question covering aspects of their quality of life. RESULTS: High median adjustment ratings were found for all 36 statements; the maximum median rating of 6 appeared on 28 items. Eight items with the lowest median ratings were in the following domains: embarrassing situations, activity, body image, sexuality, and good care. Five items on medical care and 3 items on sexuality were most frequently considered "not relevant" by respondents. The most frequently mentioned quality-of-life domains were family, health, friends, and employment. Content analysis indicated that respondents were self-reliant, although they indicated that they experienced considerable impediments to bowel evacuation outside of the home. CONCLUSIONS: in the long-term, people with a continent ileostomy have good self-care. The quality and availability of public restrooms, however, reduces their daily activities away from home.