Study design: Longitudinal study with postal survey.
Objectives: To describe changes in the patterns of neurogenic bowel dysfunction and bowel management in a population of people with spinal cord injury (SCI) followed for two decades.
Setting: Members of the Danish SCI Association.
Methods: In 1996, a validated questionnaire on bowel function was sent to the members of the Danish SCI Association (n=589). The same questionnaire was sent to all the surviving members in 2006 (n=284) and in 2015 (n=178). A total of 109 responded to both the 1996 and 2015 questionnaires.
Results: Comparing data from 2015 with those from the exact same participants in 1996, the proportion of respondents needing more than 30 min for each defaecation increased from 21 to 39% (P<0.01), the use of laxatives increased (P<0.05) and the proportion considering themselves very constipated increased from 19 to 31% (P<0.01). In contrast, the proportion suffering from faecal incontinence remained stable at 18% in 1996 and 19% in 2015. During the 19-year period, there had been no significant change in the methods for bowel care, but 22 (20%) had undergone surgery for bowel dysfunction, including 11 (10%) who had some form of stoma.
Conclusion: Self-assessed severity of constipation increased but quality of life remained stable in a cohort of people with SCI followed prospectively for 19 years. Methods for bowel care remained surprisingly stable but a large proportion had undergone stoma surgery.