fecal incontinence

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dbr14
dbr14 Member Posts: 1
edited March 2014 in Colorectal Cancer #1
Hello everyone. I had been operated for colorectal ca last 02/2002 and this left me with fecal incontinence and debilitating stomach cramps after my ileostomy was taken down.

Is there a specialized clinic for my condition in the Bay Area in California. I'm seriously thinking of having colostomy or ileostomy done to put an end to the endless pain and the limitations my condition brings to my life.

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  • taraHK
    taraHK Member Posts: 1,952 Member
    #2
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    The decision about having a colostomy or ileostomy is a tough one. I have a permanent colostomy -- but I didn't have a choice in the matter. For what it is worth, I have found having a permanent colostomy not bad at all. I can do everything I did before, and I feel my quality of life is good. I'm happy to answer any questions you might have -- as I;m sure several others on this board would.
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #3
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    I have been down your road. I opted for a colostomy that was done in 1/05. It has improved my quality of life immensely. I no longer worry about accidents. I no lnger have a sore bottom. I no longer search for bathrooms. I no longer have accidents. I can go anywhere and eat anything. And I love to eat.

    You can email me through this site.

    Good luck with your decision.

    Maureen
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #4
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    I have been down your road. I opted for a colostomy that was done in 1/05. It has improved my quality of life immensely. I no longer worry about accidents. I no longer have a sore bottom. I no longer search for bathrooms. I no longer have accidents. I can go anywhere and eat anything. And I love to eat.

    You can email me through this site.

    Good luck with your decision.

    Maureen
  • markatger
    markatger Member Posts: 314
    #5
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    Hello : )

    Sorry to hear about your debilitating problems.

    I had radiation treatments this past summer that made my daily bathroom trips very painful. I then had rectal surgery in September. At that time a J-pouch was constructed and I was fortunate (?!) to have a temporary ileostomy placed which immediately eliminated my daily bathroom anal pain. During the surgery, they removed most of my rectum and a few inches of my colon. They then used a few more inches of my colon to construct the J-pouch, which will act as my new rectum. My surgeon seems to strongly believe that I will return to normal bowel movements eventually after having my ileostomy reversed.

    How much of your colon did you lose? How long ago was your ileostomy reversed? Do you try doing kegel exercises? This site has info on incontince including diet and a section on bowel training that includes Kegel exercises :
    http://digestive.niddk.nih.gov/ddiseases/pubs/fecalincontinence/

    I also visit a site called Shaz's Ostomy Pages :
    http://www.ostomates.org/cgi-bin/yabb/YaBB.pl/YaBB.pl

    There is message board specifically about coping with ileostomy reversals :
    http://www.ostomates.org/cgi-bin/yabb/YaBB.pl/YaBB.pl?board=reversals

    Of course the doctors are still the best people to be consulting with about your problems. But maybe you can find some helpful information from those very experienced folks on those websites as well. I hope things can get better with you with the reversal intact. But as I'm sure you know from experience, that if a permanent ostomy is necessary it is also manageable.

    I hated my ileostomy at first - smelly, gross...and being an ileostomy the frequent necessary emptying of the pouch including during the night was annoying. But amazingly it doesn't bother me that much anymore. I hated it so much at first that I wanted to skip chemo just so I could have surgery to get rid of the ostomy!! Yeah - I cared less about cancer than wanting to get rid of the thing!!! Nuts. Well amazingly to me and my docs, I have gotten used to it, and in fact have decided to delay having it the ostomy taken down. I could have had taken down in January while having liver-re-section. But because I have to go back on chemo after the surgery, I decided that it would be to hard to re-train my new rectum and bowels while recovering from liver surgery and being on chemo. I also had a rectal exam last week, and MAN...I am still very tender back there, I think the radiation from last summer is still burning my anus. Yowza I think I'll postpone anything passing through there for as long as possible.

    I hope this has been helpful to you and that you get lots of good information from Shaz's site and from the specialized clinic you are going to.

    Best of Luck getting things under control,
    Maria

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