RESUMO
STUDY DESIGN: Multi-centre, retrospective self-report postal survey. OBJECTIVES: To characterise spinal cord injured (SCI) individuals with a stoma, their stoma management and outcomes, to identify sources of information and support for decision making and to explore the impact of a stoma on life satisfaction. SETTING: Five UK spinal cord injury centres. METHODS: A study-specific questionnaire accompanied by self-concept, life satisfaction and mood measures, and three simple rating scales for satisfaction, impact and restriction on life were sent to all known ostomates at five participating centres. RESULTS: Respondents were 92 individuals, mean age 56 years, mean duration of injury 26 years, 91% with colostomy. Multiple sources of information were utilised in deciding on surgery; discussion with other SCI ostomates was important. Duration of bowel care, faecal incontinence, bowel-related autonomic dysreflexia, dietary manipulation and laxative use were all significantly reduced following surgery. Rectal mucous discharge was the most common and bothersome post-stoma problem. Satisfaction with stoma was high; provision of sufficient information preoperatively was important, those with ileostomy were more dependent and less satisfied. Life satisfaction and physical self-concept were both lower in this sample than in previously reported samples of SCI individuals without reported bowel difficulties or stoma. CONCLUSION: The findings of this study of self-selected respondents with a stoma for bowel management after SCI emphasised the benefits of stoma in selected individuals and the importance of timely intervention, the complexity of the associated decision-making and of preoperative counselling. The impact of bowel dysfunction on physical self-concept warrants investigation.