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Thread: To colostomy or not?

  1. #1

    To colostomy or not?

    My bowel program has been getting slower and slower. Doctors have suggested that I get a colostomy. I am starting to agree with them. I have read a lot of threads on here about colostomy's and have a few more questions.

    How is the procedure done? What actually do they do?
    Can you have this done if you have a suprapubic?
    Do you empty every day?
    Do you have to follow a special diet?
    What do you do about flatulence?
    Do you need to take any medications with? Softeners?
    What are the odds of leaks, accidents?
    Is there any smell?
    I know this will be different for everyone but what is the feel or sensation when having a movement?
    Was it worth it to do the procedure? How has it changed your life?
    Pros and cons?
    Is it noticeable?
    Is the procedure reversible if it doesn't work?

    Thanks for any info, Clint.
    "Some days you eat the bear, some days the bear eats you?"
    http://plegicoutdoorsman.blogspot.com/

  2. #2
    Quote Originally Posted by skoalongcut View Post
    My bowel program has been getting slower and slower. Doctors have suggested that I get a colostomy. I am starting to agree with them. I have read a lot of threads on here about colostomy's and have a few more questions.

    How is the procedure done? What actually do they do?
    Here are some descriptions of the surgery. Your surgeon should of course describe in detail what they plan to do for you specifically:
    http://www.nhs.uk/Conditions/Colosto...performed.aspx
    http://www.hopkinsmedicine.org/healt...omy_92,p07727/
    http://www.surgeryencyclopedia.com/Ce-Fi/Colostomy.html

    Quote Originally Posted by skoalongcut View Post
    Can you have this done if you have a suprapubic?
    Yes

    Quote Originally Posted by skoalongcut View Post
    Do you empty every day?
    Most people empty their bag several times daily.

    Quote Originally Posted by skoalongcut View Post
    Do you have to follow a special diet?
    Not really, although if you have problems with gas you may want to make some minor modifications.

    Quote Originally Posted by skoalongcut View Post
    What do you do about flatulence?
    As above, diet adjustments may be needed. Some people also use dietary supplements such as Beano. It is also important to use a vented bag that has a charcoal filter which will allow gas to be released without causing a lot of odor problems.

    Quote Originally Posted by skoalongcut View Post
    Do you need to take any medications with? Softeners?
    Sometimes, depending on the level of the colostomy and other medications you may be taking that can cause constipation (such as opioids or anticholenergics).

    Quote Originally Posted by skoalongcut View Post
    What are the odds of leaks, accidents?
    It is critical to find the correct appliance for your needs, and that the appliance be properly applied, and emptied before it is about 1/2 full. A good ostomy nurse should work with you to help you find the best combination for you. If that is done, "blowouts" should be infrequent.

    Quote Originally Posted by skoalongcut View Post
    Is there any smell?
    Gas smell should be managed as above. There is of course some odor involved when emptying the bag or appliance, which ideally should be done in the toilet room.

    Quote Originally Posted by skoalongcut View Post
    I know this will be different for everyone but what is the feel or sensation when having a movement?
    If you have sensation in the area of the stoma, you are most likely to feel the warmth of the stool primarily.

    Quote Originally Posted by skoalongcut View Post
    Was it worth it to do the procedure? How has it changed your life?
    Many of my SCI clients tell me that it has vastly improved their quality of life, shortened the time needed to do bowel care, and reduced their risk of accidents. They often say they wished they had done it sooner.

    Quote Originally Posted by skoalongcut View Post
    Pros and cons?
    Of course it requires surgery and anesthesia, so those risks must be taken into consideration. I am sure some of the other people with SCI and a colostomy here can answer this question for you better than I.

    Quote Originally Posted by skoalongcut View Post
    Is it noticeable?
    Rarely. If you wear very tight fitting shirts it is possible to see the appliance, especially if inflated with a lot of gas, but that is unusual if you properly manage it and use a gas releasing appliance.

    Quote Originally Posted by skoalongcut View Post
    Is the procedure reversible if it doesn't work?
    If they do not remove the distal colon and rectum, in theory it can be reversed, but reversal is not always possible. Our surgeon told patients that they should not have the surgery if they are unsure about wanting to make it permanent.

    (KLD)

  3. #3
    Senior Member
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    I've had mine 3 years. Best decision I've ever made. I have an sp also.

  4. #4
    Senior Member Cowboys_Place's Avatar
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    I'm a C 4/5 quad and I have had to my colostomy since 2012 it was the best decision I ever made along with getting a SP. As for your questions the SCI Nurse answered everything the only thing I would add is making sure of placement of your stoma is in a good place. Make sure you're sitting in your chair and not laying down when you decide where to place it.

    Best of luck I'm sure you'll be happy with the decision :-)
    Courage is being scared to death but saddling up anyway. .(John Wayne)

  5. #5
    Quote Originally Posted by Cowboys_Place View Post
    the only thing I would add is making sure of placement of your stoma is in a good place. Make sure you're sitting in your chair and not laying down when you decide where to place it.
    Good point, Cowboy...I should have mentioned that. Yes, having a stoma and appliance that work together well to prevent leakage or blowouts requires that you meet BEFORE surgery with the ostomy nurse, and that they coordinate the marking of your stoma placement for the surgeon. This should be done without clothing on ideally, and with you sitting in your wheelchair, as skin folds that need to be accounted for may not be apparent if it is done with you laying down in bed.

    (KLD)

  6. #6
    Thanks for the info. Greatly appreciated. I will let you know what we decide.
    "Some days you eat the bear, some days the bear eats you?"
    http://plegicoutdoorsman.blogspot.com/

  7. #7
    Thanks for this thread. Looking into it myself.
    I was injured 2 weeks after my 16th birthday on June 14th, 2004. My level of injury is C5 complete, but I can move my wrist.

    My screen name comes from the movie The Eternal Sunshine of the Spotless Mind

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