Quality of Life in Patients Postcolectomy for Pediatric‐onset Ulcerative Colitis

Abstract

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.

Disease impact on the quality of life of children with inflammatory bowel disease

“…In 2002, Loonen et al[ 23 ] concluded that adolescents have impaired QOL scores compared to younger children, whereas Gallo et al[ 18 ] found no association. An interesting study published by Deepal et al[ 24 ] in 2012, supported that post-colectomy QOL in UC patients was better when the diagnosis was made under the age of twelve. A possible interpretation of our result is that, as children grow into adolescence, they may be able to develop more efficient coping mechanisms and therefore be less vulnerable to the psychological effect of a chronic disease.…”

Anorectal Transplantation in Human Cadavers: Mock Anorectal Allotransplantation

“…However, it must be noted that these patients suffer greatly from stresses caused by their stoma. Patients have reported decreased sexual activity and fertility at the time of survey due to colectomy, especially for females [2], and occasionally prepared for death rather than accepted their condition and potential cure [3]. To avoid colostomies, various anal reconstructions have been performed and many alternative therapies have been examined and developed [4–6]; however, no alternative options have been able to solve this critical issue until now.…”

Paediatric gastrointestinal conditions and their oral implications

“…This is not the case with CD as it can appear in any part of the GIT. A colectomy will initially result in an ileostomy which can be difficult socially for the child, especially during puberty and the teenage years; however, it can be a rapid way to eliminate symptoms and get the child back to a normal life pattern.…”