OBJECTIVES: To explore the occurrence of fecal incontinence in patients with classic bladder exstrophy (CBE) by administering a web-based pilot study. METHODS: A questionnaire assessing fecal continence status was devised. Questions included demographics, age to achieve toilet training for bowels, and the patient perception of the degree of fecal soiling during day and night, if present. The CBE contact list of our institution's social worker was addressed (324 patients) and directed to fill the survey posted at the website http://www.SurveyMonkey.com. RESULTS: There were 94 responders (29%) to the survey. They were analyzed as 2 groups: pediatric (age up to 18 years, n = 69, 9 excluded for not achieving toilet training) and adult (age >18 years, n = 25). In the pediatric group, fecal incontinence was reported in 57% of patients during the day and 32% during night. In the adult group, fecal incontinence was reported in 44% of patients during the day and 40% during night. Seven patients reported having undergone ureterosigmoidostomy (US) diversion. Stratifying patients based on US diversion showed fecal incontinence of 100% vs 22% during the day (P <.001), and 86% vs 22% during the night (P <.01), for the US vs non-US subgroups, respectively. CONCLUSIONS: Our preliminary survey suggests that fecal incontinence in CBE may be a significant overlooked issue that may persist into adulthood of CBE patients. With the potential functional and psychological burden, clinical awareness and management of this issue is crucial. Further exploration of this issue, with detailed attention to surgical procedure(s) involved and degree of quality of life impairment, needs to be initiated.
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