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Thread: C6 quad: Colostomy verses ileostomy?

  1. #1
    Junior Member
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    Mar 2009
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    California Bay Area
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    C6 quad: Colostomy verses ileostomy?

    Hello this is my 1st post. I am C6 quadriplegic that was injured 31 years ago due to a off-road motorcycle accident. Bowel function for me has been always a challenge but it has really slowed in the last year or so. I've been using a PIEMED machine for the last 3 years but that hasn't prevented my colon from getting very distended from gas and stool. I finally opted for a colostomy. However because of not having any finger function (translation:totally reliant on others for appliance management) felt I could eventually work in the irrigation process to reduce my reliance on the road-service caregiver concept...So feeling pretty good I met with a GI surgeon who felt that strictly from a functional standpoint I would be better served by a ileostomy because my colon’s function was not so good! Boy was I ignorant... He realized that since I would be so reliant on others it might be worth trying the colostomy 1st and then moving on to the ileostomy if needed, though I sensed he wasn't that optimistic about what the outcome would be...As I rapidly approach my surgery date I'm feeling some anxiety as I wonder if I should spare myself a potential extra surgery and try to wrap my brain around just taking the ileostomy head-on.
    Is there anyone reading this post that might be able to shed some insight on my situation? Some quads or care-givers of quads who can't personally manage their ileostomy's frequent drainage requirements and can share their perspective of life after embracing this new challenge? I realize this my dilemma but ones who have been in a similar circumstance might be able to share some invaluable help.
    Thanks so much…
    Kevin

  2. #2
    Hi "Kevin,"
    Welcome to the Care Cure Community. I do not have either an ileostomy or a colostomy, but there have been some threads written on this website that you will find interesting.

    At the Care Cure Community, there are 3 or 4 spinal cord injury nurses who act as moderators and comment on various care issues. This comment was posted by SCI nurse "KLD."
    "An ileostomy is from the small intestine and does not use the colon at all. The stool is completely liquid, so of course a bag must be used at all times. Rarely is there a reason to do this procedure unless you have a bowel disease or damage that would require that the large intestine be completely removed. It is more difficult to bag, and and leakage burns the skin more than stool from a colostomy. It is also more difficult to maintain sufficient fluid intake (since most of the water of your stool is absorbed in the large intestine) to prevent dehydration, and some nutrients that are actually absorbed or made in the large intestine can also be lacking. It would be extremely rare to have constipation (or even a soft formed stool) with an ileostomy." on this thread: http://sci.rutgers.edu/forum/showthread.php?t=105731

    Here are a couple other threads on this website:

    http://sci.rutgers.edu/forum/search....0&pp=25&page=2

    http://sci.rutgers.edu/forum/showthr...ight=colostomy

    http://sci.rutgers.edu/forum/showthread.php?t=155367

    Try searching the site and you may find even more information and experience.

    All the best,
    GJ

  3. #3
    Hi Kevin, I'm a C4/C5 and got a colostomy 2 months ago. I absolutely love it. It takes about 2 min to change a bag. In my case the room mate changes it. The freedom is fantastic. My life was scheduled around my bowel program, now it is a none issue. I might be able to change the bag down the road by myself. Ileostomies are much harder to take care off. You will have to empty the bag several times during the day. If you have a choice go with the colostomy.

  4. #4
    I am T-10 with a colostomy. It was supposed to be on a temp basis but I am keeping it because it is very simple to take care of. With you being a quad I would go with the colostomy unless you medically need the ileo for other reasons. There is a lot of drainage and you typically can not irrigate with a ileostomy.
    DFW TEXAS- T-10 since March 20th, 1994

  5. #5
    If you actually have a totally non-functional large intestine (what tests were done to determine this???) then you may need the ileostomy, but this is NOT easier to manage than a colostomy. The stool is totally liquid, and quite caustic. It will burn your skin if it leaks. Appliances usually must be changed every 3-4 days, and you will need to drain through the appliance into a leg or bedside drainage bag (if possible) since there will be much more volume of stool as well. Dehydration is something you will have to battle all the time, as the large bowel absorbs most of the water from your stool. You are also more subject to electrolyte problems and may have some vitamin deficiencies. I would strongly recommend getting at least one more surgical opinion prior to making a decision.

    Are you working with a good CWOCN to learn how to do appliance application, changes, and care? I would strongly encourage you to do this PRIOR to making a decision about surgery. The surgeon should be referring you. The CWOCN should also have input into the location of the stoma.

    (KLD)

  6. #6
    I am C6 as well. With your level I believe that you could manage a colostomy without caregiver help.

    If hand function is an issue you may want to consider tendon transfer surgery.

    Good luck.

    Onward & Upward,

    Chris

  7. #7
    Kevin,
    I'm a C-6 complete and i manage my bowel care solo with my colostomy. I agree with others, a colostomy has been a very positive life changing for me.
    Good luck, hope your able to have the colostomy and not have to deal with ileostomy.
    Randy

  8. #8
    Senior Member
    Join Date
    Mar 2006
    Location
    connecticut
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    8,272
    KLD .... are there different "levels" (for lack of a better word) of illieostomies? I have one - I had an issue w/ a burst section shortly after my sci, and while it was supposed to be temporary, I elected to keep it.

    But it is not as difficult to deal with as your description. The output is sometimes liquid, but usually soft. And I need to empty the bag 3-4 times a day, depending on what I eat. And I don't think I have an issue w. dehydration (based on bladder output) even considering I do not drink as much as I should.

    That all said, if I were to choose where to put it, I would pick a colostomy, as opposed to an illieostomy.
    T7-8 since Feb 2005

  9. #9
    i am c6 also getting surgery in a week , i would like to know how do you open and close the bag and clean it , i do not have finger movment and what kind of bag do you use i tried some no luck

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