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The hardest question and the question this paper attempts to tackle is what do you do for the child that fails all medical and surgical options but does not want to be left with a stoma. Both the senior author and I have attended many meetings and been surprised at how this question is so often either ignored or it is stated that this problem “does not exist.” For this reason, Jaffray should be congratulated for offering a way forward.
For those that fail any form of oral/rectal medical regimen and who have a negative rectal biopsy result, the question has always been “what is the next step?” Like Jaffray, my next step, following Malone's seminal paper,1 is some form of antegrade continence enema (ACE) procedure. There is now enough evidence to show that although the procedure is an excellent therapy for the incontinent child, it also has an important role in the child with intractable constipation.2 In my experience, approximately 10% (24/243) of patients referred with intractable constipation end up undergoing an ACE procedure, and this has been successful in 82%.
Thus, the number of children who fail both medical and ACE treatments is small. By this time, these children need a break, and this is best done by formation of a stoma. This procedure is relatively simple with little associated morbidity. It allows bowel decompression, stops the continuous soiling and allows an improved quality of life. For some children, this is all they will want, and I have four patients in whom I have given a stoma, and they have refused any further intervention.
There are, however, three problems. First, most children, although enjoying a period of time out, come back asking “what can …