Look up "Growing Up Different" on Channel 4 On Demand, not sure which episode but there is a girl with CP who has this done. It helped her loads but was hard to get use to, the episode shows her mum flushing her out and her saying "it hurts, it makes me feel sick" and I know someone personally who has an ACE and they are ASD. They hate it, again says it hurts and makes them feel sick.
I think there are a lot of things to consider, of course it can be reversed but in some ways once its there, its there. It is a direct tube to the bowel, usually they use the appendix as the tube (so I understand) so, it has to be kept clean and looked after to prevent things like infection. Its not like an open would but it is a direct tube to the bowel.
Not sure if you have seen this links
http://www.hirschsprungs.info/Information/literature/ACE.pdf
http://www.shinecharity.org.uk/uploads/media_items/antegrade-continence-enema-procedure.original.pdf
But thats two info sheets on them.
