Long-Term Adjustment to Living With an Ileal Pouch-Anal Anastomosis

PURPOSE: The aim of this study was to describe long-term adjustment to life with an ileal pouch-anal anastomosis after surgery for ulcerative colitis, to investigate the relationship of pouch function to adjustment, and to explore factors affecting quality of life. METHODS: A total of 369 patients treated between 1982 and 1993 were included in the study. Questionnaires designed to assess bowel (pouch) function (Oresland score) and disease-specific adjustment (Swedish version of the Ostomy Adjustment Scale), plus open-ended questions regarding quality of life, were sent by mail. Open-ended questions were analyzed with qualitative content analysis. RESULTS: A total of 252 patients (84%) returned the disease-specific adjustment questionnaire (141 males/111 females); median age, 51 (range, 26-77) years; median follow-up, 15 (range, 10-21) years after construction of the ileal pouch-anal anastomosis. High adjustment ratings were found for all statements, with the maximum median score of 6 on 28 of the 36 items. Items with the lowest ratings (median score, 5) pertained to things one would do if not for the IPAA, feeling free to travel, ability to enjoy sexual activities, comfort with body image, ability to laugh about awkward situations, confidence in the appliance, and whether the surgery helped with decisions on what things are most important in life. Participants with the lowest adjustment scores had low bowel function scores (P < .0001). Open-ended quality of life questions were answered by 150 patients (59.5%). The most important areas for quality of life were health, family, restroom access, and friends. Five categories emerged from the qualitative content analysis: living a "normal" life, food restrictions, physical limitations, influence of restroom access on social life, and being dependent on medical care. CONCLUSIONS: Most participants had adjusted well to life with an ileal pouch-anal anastomosis and considered life to be normal. Good public restrooms were important for quality of life. Improving pouch function may help patients adjust to the postoperative state, but deeper understanding of reasons for poor adjustment despite good pouch function is needed.