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Thread: illeostomy: pros and cons

  1. #1
    Senior Member jessie.gray's Avatar
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    illeostomy: pros and cons

    After several years of having trouble with constipation and exhausting all my other non surgical options, my GI doctor is considering doing either a ceceostomy or a illeostomy on me.

    Has anyone on here had either one of these surgeries? What are the pros and cons of them? I am not very fond of having to wear a bag all the time, but I hate being constipated all the time.

    Jessie

  2. #2
    Jessie:
    You don't really say what you have tried with bowel programs, but I am assuming that you have tried a lot of things.

    I have know several people who opted to have either a colostomy or ileostomy and where thrilled afterwards. They had a sense of freedom since they no longer had to worry about accidents or having someone around to do their bowel program.

    However, everyone is different. Take your time on the decision and if you are uncomfortable doing it, look for a second opinion. See if there is something else you can try.

    Good luck@!
    CKF

  3. #3
    Moderator Obieone's Avatar
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    Hi Jessie ... my husband Bill has an ileostomy (T5 post 9 years) and he has never looked back. It wasn't a choice in his case it was as a result of a gut surgery that necessitated it ..... but as its turned out it has worked out very well and allowed for less resitrictions bathroom wise and of course no more lengthy bowel program which could last up to 2 hours daily !

    If you do a search using either word ileostomy or colostomy you'll find much info here ...... all the best!

    Obieone
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    Senior Member Tim C.'s Avatar
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    Colo yes, Ileo not so yes>

    If you have a choice to avoid ileo's , I was told it sucks out all the electrolytes from your system and you'll have trouble keeping the levels up.
    From a trusted MD.

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    Jessie,

    I thought I had posted in this thread the other day, bt I guess not.

    Like Bill, above, I had an illieostomy b/c of medical issues ... it wasn;t a choice. I was told at the time it was reversible, but have since decided not to reverse it. In fact, when I went for a follow up with the surgeon, I expected him to try to get me to reconsider, and his response was "good, I was afraid I would have to try and talk you out of it."

    I think it makes my life much easier. Yes you have and appliance attached, but it's not like I would be running around in a bikini anyway!! If it is an option thoo, I would recommend you consider a colostomy rather than an illioestomy. As it is lower in the intestines, your body will absorb more nutrients.

    I have posted a lot about this, if you search for illieostomy or colostomy posted by me you will find several threads that have TONS of info in them!!

    ps. I think you have a mitrofanoff? Be sure that your surgeon considers that as well. Good luck!!
    T7-8 since Feb 2005

  6. #6
    Senior Member jessie.gray's Avatar
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    Thanks for the replies.

    As far as stuff I've tried for a bowel program, this is what I've done so far:
    manual removal
    Miralax
    castor oil
    Magic Bullet suppositories
    different types of enemas
    scheduled toileting
    natural herbal remedies from the health food store
    that Activia yogurt

    None have helped so far, or they work for a little bit and then stop working.
    Now, I have always heard that a colostomy smells really bad. Is this true? I don't want a procedure done that's going to make me stink all the time. Also, can you swim with a ileostomy or colostomy? I recently joined the YMCA to use the swimming pool, and was wondering this.
    Is it also true that if you have an ileostomy done, you can't take any extended release pills? I take Tegretol XR for epilepsy and Ditropan XL for my bladder and both are extended release pills.

    Would it be easier to get a cecostomy done? This is where they insert a tube in your cecum and you can inject saline into it to completely clean your colon every other day. My friend has one of these and rarely has trouble with constipation or incontinence.

    Jessie

  7. #7
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    Quote Originally Posted by jessie.gray
    Now, I have always heard that a colostomy smells really bad. Is this true? I don't want a procedure done that's going to make me stink all the time. Also, can you swim with a ileostomy or colostomy? I recently joined the YMCA to use the swimming pool, and was wondering this.
    Is it also true that if you have an ileostomy done, you can't take any extended release pills? I take Tegretol XR for epilepsy and Ditropan XL for my bladder and both are extended release pills.



    Jessie
    The ostomy only smells when you empty the bag. In the bathroom, just like any other bowel method. I actually use drops that help eliminate that odor. The bags I use have a charcoal filter, so any gas that builds us in the bag is let out, and doesn;t smell. (With out the filter you would have to open the bag and vent it a bit, when I used bags w/o it, I would just go to the bathroom to vent it. think-fart.

    I swim with it, The vented ones come with a sticker to place over the vent. Everything is sealed tight. Just a littly bulky under a swim suit. If you have a colostomy instead of an illieostomy you could use a smaller bag for swimming. The only problem I do find is that I have to change the wafers more often when I swim. They last 4-5 days, but every time they get really wet, it shortens that time a bit. (So say you showered on Monday morning, than swam on Monday afternoon, and took a long shower on Tuesday, and swam again, I would have to change the wafer by Wednesday. With only real quick showers all week, it would make it until Friday. No big deal tho', I can tell it starts looking "worn".)

    Not sure about the extended release. I have an ilieostomy, and was told to stay away from capsuls, that they would go through intact, but after having to take a drug where I had no choice, it doesn;t seem to happen. But I am not sure how extended release work, they may not stay in your system long enough?
    Last edited by sjean423; 09-24-2007 at 09:18 PM.
    T7-8 since Feb 2005

  8. #8
    go to the Holister website- they have information and videos on what it entails and how to manage it. www.hollister.com ( or org)


    CWO

  9. #9
    Senior Member 6string's Avatar
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    Hi, Jessie.gray.I've had an ilieostomy, for urine, since I was 3 1/5. I don't know how different it is from bladder to bowel, or males to females, but I can tell you it has pretty much eliminated the threat of infection. After almost 40 years, I've only had very minor infections. In my younger days I swam nearly every day, played basketball, football, street hockey, and just about anything else my AB friends dragged me into. The only problem was every once in awhile it wanted to be changed sooner than I expected. Now I keep to a changing schedule, and everything is cool. Very rarely will it throw a monkey wrench into my plans. Of course, everyone is different, and there are no guarantees in life. I hope this helped a little bit. The very best of luck in whatever you do.
    "Music will always find its way to us, with or without business, politics, religion, or any other bullshit attached. Music survives everything, and like God it is always present. It needs no help, and suffers no hindrance. It has always found me, and with God's blessing and permission, it always will." Eric Clapton

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