title: Thirty years of experience living with a continent ileostomy: bad restrooms--not my reservoir--decide my life.
abstract: OBJECTIVE
  This study describes long-term adjustment of people with a continent ileostomy.
  
  
  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.
authors.affiliation: Sahlgrenska University Hospital Ostra, Sahlgrenska Academy, Faculty of Health and Caring Sciences, Institute of Nursing, Göteborg University, Sweden. ina.berndtsson@surgery.gu.se
authors.forename: Ina
authors.initials: I
authors.lastname: Berndtsson
authors.forename: Elisabet
authors.initials: E
authors.lastname: Lindholm
authors.forename: Inger
authors.initials: I
authors.lastname: Ekman
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D039021:Colonic Pouches; D005260:Female; D006801:Humans; D007081:Ileostomy / Q000523:psychology / Q000534:rehabilitation; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D012648:Self Care; D013548:Sweden