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Loop Ileostomy Problems

Fri, May 07, 2010 7:27 PM

I posted on here a few months ago but I am desperate for some answers so I am hoping someone else on here has had a similar experience.

My quick back-story is that I've had Crohn's Colitis for eight years, with a a lot of colon and peri-anal disease. I've been on everything imaginable and the only thing that worked was Remicade but I stopped responding to that last year. During an extremely severe flare up last year, I opted to have a temporary loop ileostomy done in hopes that bypassing my colon and rectum would help my problems while buying me time to find a new treatment that worked, seeing as how I have not had history of Crohn's in my small bowel.

Since my stoma was formed in August 2009, I have had nothing but problems. I still have significant amounts of blood, mucous, and stool coming from my rectum. Often food remains completely undigested when it comes out of my bottom. I understand that until I remove my colon and rectum, my disease is still going to be active, but I guess I am having a hard time understanding why I run to the bathroom more times a day than I am emptying my pouch. I was wondering if anyone else has had a similar issue with loop ileostomies? I suspect that mine was not formed very well as it is extremely flush with my skin and often my stoma opening seems to be pointing towards the wall of my abdomen rather than outwards.

My doctors, of course, just want me to have a permanent ileostomy done but I am very young and obviously this would be a huge decision for me and I am not ready to go down that path. I sought a second opinion who threw out the idea of diversion colitis, which could be a possibility, but still does not explain the poor functioning of my ileostomy. I am really hoping someone else can provide some insight because it is extremely frustrating to not only have to deal with the pouch itself but also the same urgency/frequency/pain that I dealt with before all of this.

Thanks.

sween
Joined Dec 23, 2009

Sat, May 08, 2010 12:00 AM

Reply posted for sween.

Good morning-
I hear your frustration. My son needed to use a convex type wafer (extended wear) with belt to help position the stoma better. Once we switched to that type, he had less stuff to slip into the lower stoma hence, pass. He, too, had some colitis in the rectal cuff area when had the temp ileo. If it were alot, the dr encouraged him do meds rectally til less. We found our best resources were our WOCN (she was awesome) , www. uoaa.org and www.jpouch.org..... we got different samples wafers/bags/barrier rings to try until we found what worked best. I have to admit that most nights he chose to sleep in the recliner as it was easier for him with the ileo/positioning. He was very thin so this worked best for him.....(still is but much healthier now).
Take care!

kc
Joined Jun 23, 2009

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