illeostomy takedown

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sandi4100
sandi4100 Member Posts: 1
edited March 2014 in Colorectal Cancer #1
i had rectal cancer. i had radiation and chemo. i have had a ostomy and illeostomy. i had a takedown about 8 weeks ago. im taking imodium and benefiber. it seems to help sometimes. it's the number of bowel movements that is causing the stress. does anyone know how long does it take to get somewhat normal? any suggestions?

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  • markatger
    markatger Member Posts: 314
    #2
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    Hi Sandi,

    I had my takedown May 2006. I still have between 4-6 bowel movements a day. I think I am doing ok - could be better but could be worse. I know people who struggled with having no control after their takedown, so I think I considered myself kind of lucky. I probably could be doing better.

    The only suggestions would be to of course be careful with your diet - try to eat many food that can slow things down.

    Also consider looking into bowel re-training. This is something I need to try more. It is about trying to encourage your system to have one emptying bowel movement per day. Here is a website (the Url says constipation, but it is for everyone with bowel disorders.) I had another good website but I can't find it now.

    http://www.aboutconstipation.org/control.htm

    Best Wishes,
    Maria
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #3
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    I feel your pain. After my takedown I could have lived in the bathroom. I often thought of sleeping in there.

    You are very early still in your healing. It takes months and things will never be the same.

    My body never was able to adjust to the changes from surgery. I had from 20 - 40 BM's a day. I went all day and night. My bottom was always in pain from the frequent traffic. About 18 months after my takedown I had a colostomy done. I haven't looked back. I have my life back. I wish I didn't have to do this, but I am OK with my decision.

    You definitely have to give it more time.

    Good luck

    Maureen
  • goldfinch
    goldfinch Member Posts: 735
    #4
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    Eight weeks is not too long a time. I would expect it to take months and it will never be "normal". But you learn to live with it. I'm always happy if I can manage a few around breakfast, one or two around lunch as well as supper. This is without imodium or benefiber (I used metamucil wafers. Found them very helpful). Of course, this is all when I'm off chemo. When I'm on chemo all bets are off. It also depends on how much of your GI tract was removed. I only lost my rectum. If you still have your rectume you may do better than I did. As my surgeon told me, he can't make as good a rectum as God can.
    A site I found very helpful was the J-Pouch group (http://www.j-pouch.org/). Most of them suffer from IBS and have had there whole large bowel removed, so it's a bit different, but they have many helpful hints.
    Hang in there, it gets better.
    Mary
  • collardm
    collardm Member Posts: 6
    #5
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    Sandi,
    I had all my rectum removed due to rectal cancer and have a colo-anal anastamosis. I had an ileostomy for 9 months and had it reversed in May 2006. At first it was very difficult with lots of frequency and urgency, but it gets better. I found the following URL from MD Anderson very helpful.

    http://www3.mdanderson.org/depts/hcc/summer99/surgarticle.htm

    I followed those recommendations and feel almost normal now. In the beginning I often wanted my ileostomy back, but life is much better now without the ileostomy!

    Good Luck,
    Mark
  • drmrgirl47
    drmrgirl47 Member Posts: 129
    #6
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    Hi,
    I also had rectal cancer; radiation, chemo and temporary ileostomy. I had my entire rectum removed. Had take down in 2004. I used to go approx. 10-20 times per day. Oddly enough, not at night. I could sleep through the night without any problem. I guess things rest. In the beginning, I was on Lomotil (about 12 per day) for a few months. I weaned myself off of it after the first few months. I now go approx. 3-9 times per day. Mostly after breakfast and after dinner. If I am going out to dinner I take one Lomotil and that slows things down. After a while, you will learn what you can and cannot eat. My doctor says that it takes around 2 years for things to calm down (in some people). If at the end of the 2 years you are going between 3 and 9 times per day that is probably how it will be. It will never be quite normal. In 10 years, the colon will become like a rectum. Anyway, I figure 3-9 times is better than 20! I eat like a horse and find that cheese and bananas really slow things down for me. I could not take benefiber at all. I guess everyone is different and don't get discouraged or frustrated. It takes time for these things to heal. Some people faster than others. Good luck.

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