Success of Malone's antegrade continence enema (MACE) from the patients' perspective.

PURPOSE Fecal incontinence (FI) is a devastating problem for children. The failure of optimal medical treatment may require further interventions such as appendicocutaneostomy. We report on a patients' perspective of the success of a Malone procedure for FI. PATIENTS AND METHODS The records of 32 patients who had undergone ACE procedure in the past 9 years were reviewed. Patients and families were contacted, and telephone inquiries were conducted to assess the overall success of the operation. The questionnaire covered the concerns of patients/families about the stoma, functional results and changes in the patients' quality of life (QOL). RESULTS The indications for ACE stomas were meningomyelocele in 17 patients, anorectal malformation in 8, Hirschsprung/NID in 3, spinal tumor in 3 and traumatic spinal injury in one. 7 laparoscopic and 25 conventional operations were performed. The vermiform appendix was used in 27 of the patients and a cecal flap was used in 5. The most frequent complication was stenosis of the stoma orifice observed in 14 patients. 8 patients responded to dilatations while 6 patients required minor surgical revision. There were 2 perforations during catheterization, and they required surgical repair of the conduit. 5 patients had mild leakage from the stoma; all 5 were open ACE procedures, and required revision. 25 patients could be reached by phone. 5 of these children stopped using the stoma due to previous perforation in 2 patients and stricture in 1. The remaining 2 stopped using their stomas because "they did not like the idea of it". 16 patients are completely clean. 3 patients have occasional soiling. Only one patient was not satisfied with using the ACE stoma and stated that it did not sufficiently improve her condition. 8 patients complained about the duration of the enema (longer than 1 h); however, 5 of them refuse to use the stoma every day. All patients but one perceived a significant improvement in their QOL. Mean QOL scores before and after the procedure were 5.8 (2-9) and 11.5 (5-14), respectively. CONCLUSIONS ACE stomas provide a satisfactory improvement in patients' quality of life. Stoma-related complications are not uncommon. The most common problems are strictures, followed by stoma leakage.