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Thread: Colstomy

  1. #1

    Colstomy

    Hi all,
    After 27 years of dealing with and scheduling my life around my Bowel Program, I am scheduled for a consultation to get a colostomy. I am a c5/6 quad with a mitro & bladder augmentation (20+ years), and I'm hoping a colostomy will be as positively life changing as the mitro. I am hoping I will be able to deal with it independently, without finger function. I am completely independent with my mitro.

    Anyone who's made this choice want to share info, anything is appreciated - the good, the bad, the ugly?

    TIA
    Alissa
    "We must become the change we want to see in the world." Gandhi

  2. #2
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    Recently, I had a consultation with a physiatrist at Stanford University Medical Center. We discussed bowel routine alternatives from bisacodyl suppositories to Enemeez, to Peristeen to colostomy. Personally, I'm not ready to take the step to colostomy, but I thought her insights were interesting. She has spinal cord injury care experience at Stanford and before that 3 years at a VA hospital here in Northern California. She said she has seen dozens of people get a colostomy. Most all of them went into the procedure reticently. But, after having the procedure and adapting to it, she said she has never had one person want a reversal or who were disappointed they went ahead with it.

    Good luck and keep us up to date with your decision and results.

  3. #3
    Thank you. I would actually feel so much better about it if I were at Stanford. Unfortunately I'm at SF Kaiser, and that worries me just a bit.
    "We must become the change we want to see in the world." Gandhi

  4. #4
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    Is the doctor anticipating doing a (MACE) Malone antegrade continence enema procedure next to the Mitrofanoff? The appendix is divided and one channel is used for the Mitrofanoff and the other for the MACE.

    https://www.ncbi.nlm.nih.gov/pubmed/11371987

  5. #5
    I'm just going in for a consultation, but from what I've read about the malone procedure, it's not what I want. My butt is screaming for me to leave it alone. I can't spend hours sitting on a commode chair anymore. My family life can no longer revolve around my bathroom schedule.
    "We must become the change we want to see in the world." Gandhi

  6. #6
    Senior Member pfcs49's Avatar
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    I have a colostomy since 2012. It definitely gives you back all that wasted time.
    And if you're having bowel accidents, it puts them where they're a lot easier to deal with! (I was not; got mine when I had a butt sore and flap)

    The placing/replacing of the adhesive flange around the ostomy is pretty "digital" as is the unsnapping of the collection bag.
    I don't know how it would be for you. I think the best way to check it out would be to mark the ostomy site with a magic marker, and go through the procedure several times of preparing the flange, adhering it, putting the bag on and off. If you're not in a hurry, I could send you some flanges and a bag and you could practice.
    No sense going into this blind!
    Also, most hospitals have an ostomy nurse who may know of other more quad friendly options.
    69yo male T12 complete since 1995
    NW NJ

  7. #7
    Thank you so much. I'd really appreciate some materials to try. I'll PM you my address.
    "We must become the change we want to see in the world." Gandhi

  8. #8
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    I had a colostomy in August 2016 and manage independently without much difficulty. I use a convatec one piece disposable. I'm a c6/7.

  9. #9
    Thank you for your feedback. I will check that out. How often do you change it & how does your skin handle that?
    "We must become the change we want to see in the world." Gandhi

  10. #10
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    Quote Originally Posted by alissa View Post
    Thank you for your feedback. I will check that out. How often do you change it & how does your skin handle that?
    I have had mine since 2006 2007 somewhere quad 6 7 I did use the flat wafers and a bag that stuck on could not use the click on the after about 6 years the wafer started coming off bad problem but they had me try a different type and no more coming off

    I still use the same pouches . mine is high up and soft movements for some reason I get really loose after eating whats supposed to be good for use oTMEAL homemade veg soup chilli after 3 meals .... but I put a plastic sack over my lap the I use ingle

    grocery sacks to put the mess in I change in the safety zone of the sack plenty of toilet paper and a wet wash rag if it gets bad 5 minutes tops I done I aslo keep supplies in my van just in case

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