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J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 2/8/2011 10:42 PM (GMT -6)   
My handicapped son had a total colectomy with ileostomy in Sept of 2008 for severe UC that he had battle for over a year. He also had LADD's procedure done at the same time for malrotation of his small intestines. It was somewhat an urgent surgery. At the time of his surgery the surgeon told us that she had left a few inches of colon and that sometime in the future this would need removed. She told us that it would be a lot easier surgery and would be able to be done "externally". 6 months after this colectomy he had emergent surgery for an obstruction (lysis of adhesions). Well he has had drainage from his rectum basically since his surgery. As time goes by the drainage has become more frequent and now often is bloody. We have decided it is time to have the remainder of his colon and rectum removed d/t the high risk of cancer. They did a barium enema and determined that the amount of colon that is left is too much to remove "externally" and he will have to undergo another major abdominal surgery. The surgeon said that there is a very remote chance that he could do it lapraoscopically, however, d/t all the scar tissue this is highly unlikely. He told us he will need to be in the hospital for possibly a week or more.  The surgeon doing the procedure is the head surgeon of IBD at Nationwide Childrens Hospital in Columbus, Ohio and we feel confident in his expertise. He did the emergent surgery for the obstruction. 
 
 J is a real trooper and is amazing with his tolerance to pain. I am having difficulty putting him through yet another surgery when he seems to be feeling so good. We just keep telling ourselves we need to do this to prevent cancer. I have read where some folks take forever to heal when the rectum is removed. I guess I am trying to find anyone that has had to have this done and is it as bad as the colectomy? Or maybe I am just looking for reassurance ? confused  

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/8/2011 11:21 PM (GMT -6)   
i had mine removed, and it didnt take long to heal, it was hard because it was hard to get comfortable, i couldnt lay on my sides or stomach because of the stomach incision (i had my ileo at the same time) and i couldnt lay on my back because of my butt, so i finally figured out a way to prop myself up. and sitting was hard, and i ended up sitting sort of on my tail bone, which resulted in a bed sore like thing. So, i just finally had to tough it out and sit where it hurt. And it itched really badly, i found that wearing a panty liner and changing it like every hour helped with that, i dont know if you could get him to do that or not.
i don't think i helped you any, i might have made it worse!
but it only hurt for about two weeks, after that it would only hurt if we drove over railroad tracks or something, but by four weeks it wasnt hurting at all.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 2/9/2011 6:33 AM (GMT -6)   
Thanks, no that helps. J can't tell us if it hurts at least that gives me some idea of what he might be experiencing.
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