Spinal cord injuries and bowel stomas: timing and satisfaction with stoma formation and alterations in quality of life

STUDY DESIGN: Cross-sectional study. OBJECTIVES: Neurogenic bowel dysfunction (NBD) is frequent among individuals with spinal cord injury (SCI) and is often difficult to treat. A bowel stoma is considered the last-resort treatment option for individuals with SCI and severe NBD. This study aims to explore whether individuals are satisfied with their bowel stoma and how they feel about the timing of stoma formation. Furthermore, we want to explore side effects addressing diversion colitis and changes in quality of life (QOL) after stoma formation. SETTING: Netherlands, community. METHODS: We included participants aged at least 18 years with a traumatic or non-traumatic SCI and bowel stoma. Questions regarding timing of stoma formation, alterations in QOL after stoma formation and experienced side effects of the bowel stoma were addressed in an online questionnaire. RESULTS: In total 23 participants filled out the online survey. Twenty-two participants (96%) were satisfied with their bowel stoma and 83% felt their stoma was placed too late or far too late. The large majority (>80%) reported improvements in the four QOL domains after the procedure. Nine participants reported stoma-related problems in the last month. In the last three months, seven participants (30%) reported to have diversion colitis. Four of these seven participants experienced this at least once a week or more. Two participants stated this had moderate influence on daily activities. CONCLUSIONS: Most participants with SCI experienced improvement in QOL and in retrospect wanted their bowel stoma earlier. Early, extensive conversations to inform individuals about bowel stoma as a treatment option is recommended.