Background
Ulcerative colitis in children can have a negative impact on quality of life (QOL).
Methods
We included 16 of 31 patients who underwent colectomy for ulcerative colitis before 20 years of age between 1980-2005 at UCSF Benioff Children’s Hospital. A disease-specific QOL questionnaire (IBDQ-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 post colectomy 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 101-199, and 2 (12.5%) had ≤100. Patients ≤18 years 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 systems (median 7; IQR 4-7). Patients with scores ≤100 had repeated episodes of pouchitis (16-30) compared with the other 14 patients (0-3). Children diagnosed ≤12 years of age tended to have higher QOL (p=0.072). Years post-colectomy did not correlate to QOL. Eleven patients were sexually active. Two males had feelings of impotence and decreased libido, and six females experienced dyspareunia. Three women tried unsuccessfully to conceive after colectomy. One woman became pregnant four 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 two 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.