Quality of life after J pouch - ileostomy

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AngelaW
Posts: 300
Joined: Thu Nov 08, 2007 1:48 pm
Location: NC

Re: Quality of life after J pouch - ileostomy

Postby AngelaW » Mon Feb 09, 2009 7:42 pm

I had the J pouch and temporary ileostomy after undergoing my first LAR in January 2007. I had my ileostomy reversed March '07 and the fun began. I had a horrible time going to the bathroom. I had to constantly take stool softeners, Dulcolax, etc. Not to sound gross, but I only passed pencil thin stools. I then got constipated at the end of March, requiring a trip to the ER. Two enemas later, I was feeling better. I still had problems going to the bathroom after that, and I needed to give myself enemas to make things happen. Towards the end of April, I developed a rectovaginal fistula and underwent a 2nd LAR with a colostomy. I believe all this was caused from radiation and scar tissue built up from it. I underwent a colonoscopy last February where it was determined the colostomy cannot be reversed, as they couldn't get a pediatric scope past my reconnection point. Again, scar tissue.

This is just my experience, and I'm not saying this will happen to anyone else.
Rectal Cancer Dx 11-2-06 Age 38
Stage IIIC 7/16 nodes +
5FU/Rads prior to LAR on 1-31-07
R/V Fistula 4/07
2nd LAR 5-4-07 plus colostomy
FOLFOX done 11-6-07
http://www.caringbridge.org/visit/angelawalker
Breast Cancer/Dbl mastectomy 8-11-08

OliviaF

Re: Quality of life after J pouch - ileostomy

Postby OliviaF » Fri Feb 27, 2009 11:17 pm

I had an ileostomy for 2 years. I had it for 5 months, then a takedown when I had it off for a month, developed a fistula so the ileostomy went back on and then had it on for another 18 months. I had some issues with leakage on the first ileostomy, which resulted in huge skin irritations, but I believe it was due to a hernia I had developed in the area so the ileostomy was not laying flatly on my abdomen. When the surgeon put on the second ileostomy, he did it in a more permanent manner, so it was less of a loop, I think and I really didn't have any leakage problems with it. I really got the hang of it and while it wasn't pleasant, the worst thing about it was the smell in the morning from the mixture of stool and gas. The daytime smell wasn't nearly as bad. But, I could wear tighter fitting clothes and even a bathing suit and friends couldn't even tell that I had the ileostomy. There is some benefit in knowing you always have a bathroom wherever you go! Before my final takedown 5 months ago, I had come to the conclusion that I could live with the ileostomy and would be fine with it. After the takedown, things were very difficult for 2 months. There were times early on when I was in the bathroom every 5-10 minutes the whole day (some days were 30 times a day where I would be going only the tiniest bit, but had the worse butt burn from all the wiping). It is hard to distinguish between gas and BM and every urge results in a run to the bathroom until you are sure that you can hold it and wait a bit. I didn't work for the first two months, but went to work after 2 months even though I wasn't sure I could leave the house and make it. Every month since then has been better and I have more good days than bad, but it is still a balancing act and I am learning about the right combination of metamucil, probiotics and foods to make things better. After what we have been through, we can get through each of these things....


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