Major ileostemy problems

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New Member

Date Joined Jan 2007
Total Posts : 16
   Posted 9/17/2008 12:32 AM (GMT -6)   
I got my colon taken out in may to get an ileostemy for an eventual j pouch surgery. I liked the original surgery but unfortunately I got a major small bowel obstruction from scarring within a month. I had to get surgery again and the problem with that was the had to make the incision about an inch over from my stoma. I now have a major wound there and there is no way of securing an ostemy bag over my stoma now. I have about 7 leaks a week and I'm unable to attend class or have a social life. I hate having leaks and having feaces on me. I am severely depressed and stressed out. This is the worst thing that has ever happened to me in my life by far. I still have to wait til december to get my j pouch attached and I just don't know if I can go on much longer like this. I need help or advice from anyone that may have been in this situation.

Elite Member

Date Joined Apr 2004
Total Posts : 23551
   Posted 9/17/2008 6:07 AM (GMT -6)   
I'm so sorry that you are going thru this! Have you tried asking for advice on our Ostomy forum yet?
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Veteran Member

Date Joined Aug 2008
Total Posts : 5975
   Posted 9/17/2008 8:19 AM (GMT -6)   
I am so sorry you are going through this.  I haven't had the surgery but was contemplating it.  I saw a colorectal surgeon last month and he said I wasn't a candidate for it just yet.  I've been in a flare since April, hospitalized for ten days in May.  The colorectal surgeon I saw is listed as one of the top ten in the country, a Dr. Mark Pello here in south Jersey.  I was very impressed with him.  Usually surgeons just want to cut cut cut.  However, he listed all the complications that come along with the surgery and said it is a LAST resort for this disease...UC.  My condition is SLOWLY improving but I am still bleeding with every bowel movement...not as bad, but still see the blood.  I am not in any pain.  My UC is confined to the rectal area.
May I ask where you had the surgery done?

New Member

Date Joined Feb 2006
Total Posts : 15
   Posted 9/17/2008 8:19 PM (GMT -6)   
I am sorry you are having issues with your ostomy. I had my illeostomy for a little over a year between my two surgeries. My stoma was retracted and was completely flush to my skin so I had alot of leakage problems too. I kept 3rd degree burns from the leaks as well. Having a good ostomy nurse is helpful, maybe they can try different things. Otherwise I recomment just changing things out often to help prevent the leaks. Hang in there. December will be here before you know it. The second surgery is so much easier than the first.
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