Diversion Colitis/rectum

[DebR]

Hello! I am writing on behalf of our son. He is 13, and has had his ileostomy since age 8 due to total colonic Hirschsprung's disease. For the last 3 years, he's had problems with diversion colitis, with each bout getting more severe. His surgeon did a scope last week; it showed that the remaining 3" of colon just above his rectum has thinned considerably. We are using short-chain fatty acid enemas to hopefully thicken the tissue, but after each one he discharges blood clots (we've only done a couple so far, so maybe this will resolve).

We've heard that the cure for this problem is removal of the affected area. For those of you who might have had this problem, and used the enemas or had the corrective surgery, I have some questions:
1) in the event the surgeon feels that the remaining colon plus the rectum need to be removed, how high is the risk of our son suffering from erectile issues due to nerves being cut/damaged?
2) in general, do the short-chain fatty acid enemas tend to work for the long-term, or is this a short-term measure?

I guess I'll also ask our surgeon if he can just remove the remaining segment of colon, and leave the rectum -- but does the rectum itself tend to have diversion issues as well?

Any advice is welcomed! Thanks to those of you who responded from the Young Adults board, and for referring me here.

Deb

[Lynne]

Deb,

My surgery was for Ulcerative Colitis, so I really don't have the background necessary to answer your questions. Hopefully someone else here will be able to help.

Good luck,
Lynne