Background: Ulcerative colitis in children can have a negative effect on quality of life (QOL).
Methods: We included 16 of 31 patients who underwent colectomy for ulcerative colitis before 20 years of age between 1980 and 2005 at University of California in San Francisco Benioff Children's Hospital. A disease-specific QOL questionnaire (Inflammatory Bowel Disease Questionnaire-32), validated for adults, was used to determine QOL and an additional questionnaire addressing bowel function and reproductive health in long-term follow-up of these patients.
Results: Median age at the time of survey was 20.3 years (17.9–25.3), and time postcolectomy was 6.9 years (4.8–9.0). Mean total score was 159.7 ± 43.3 (58–210). Two patients (12.5%) had scores of ≥200, 12 (75.0%) had 101 to 199, and 2 (12.5%) had ≤100. Patients ages 18 years or younger at the time of survey showed higher QOL, particularly in emotional health (P = 0.020), social function (P = 0.014), and overall QOL (P = 0.009). Social function scored highest of all of the systems (median 7; interquartile range 4–7). Patients with scores ≤100 had repeated episodes of pouchitis (16–30) compared with the other 14 patients (0–3). Children who were diagnosed ages 12 years or younger tended to have higher QOL (p = 0.072). Years postcolectomy did not correlate to QOL. Eleven patients were sexually active. Two males had feelings of impotence and decreased libido, and 6 females experienced dyspareunia. Three women tried unsuccessfully to conceive after colectomy. One woman became pregnant 4 times, each leading to miscarriage.
Conclusions: Younger age at time of colectomy, diagnosis, and survey show higher QOL. Highest satisfaction was found in ability to attend school, work, and social engagements. Pouchitis continued to be an issue for a small number of the patients, with 2 patients having recurring episodes that severely affected QOL. Patients reported decreased sexual activity and fertility at the time of survey due to colectomy, especially for females.