Questions about ilieostomy reversal

Options
mukamom
mukamom Member Posts: 402
edited March 2014 in Colorectal Cancer #1
When DH was dx with IVcc, we were discussing with the surgeon the colon resection and "reversible" ilieostomy. The original plan was to do the reversal after recovery from liver resection, which was later down the road, after chemo to reduce the tumors. Well, the cancer did not stick with the plan and the reversal has been put off twice because of recurrance.

DH really wants this bag off of him. After reading some of these threads, some folks mention that there are bowel issues after a reversal...Are these problems worth going thru a reversal? What kind of down time is there after sx?

Granted, this reversal might never come. As it looks now, can't even see it on the horizon. But info will be helpful so I can grill the surgeon if and when the time comes.

Thanks in advance for your help. Wishing all a blessed day.


Angela
Caregiver to Robert
Dx Dec '08

Comments

  • PGLGreg
    PGLGreg Member Posts: 731
    Options
    I didn't have an ostomy,
    I didn't have an ostomy, myself, but here is an interesting discussion of reversal: http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=9501 . I gather that the bowel issues after a reversal can go on for quite a while.

    --Greg
  • mukamom
    mukamom Member Posts: 402
    Options
    PGLGreg said:

    I didn't have an ostomy,
    I didn't have an ostomy, myself, but here is an interesting discussion of reversal: http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=9501 . I gather that the bowel issues after a reversal can go on for quite a while.

    --Greg

    greg
    Thanks for the link..good info. Makes me think that no more bag outweighs any "inconviences" from the reversal. Though he has had it for almost 2 years...

    Angela
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Options
    My reversal was last November and I'm still having issues. Although I'm glad to have the ileostomy reversed, it can pose some problems. Just the other night my bathroom issues were bad, but the next day it was bearable. Went to a movie today, out to dinner, can go to mall, shopping, visiting, almost anything. Just sometimes right after eating being next to a toilet can be a blessing. Sometimes thinking about having the appliance vs. bathroom issues, I'm happy with my decision. My doctor told me it could take two years for normalcy. I'm ok with that.

    Sorry about your husband and his setbacks. Hoping that he will get better soon so that he can have the reversal. If you have any other questions, please ask me.

    Remember, not every reversal is the same. Some don't have any problems at all. Good luck.

    Kim
  • theresa8
    theresa8 Member Posts: 61
    Options
    Hi Angela !
    I was also a care giver to my husband Gilles. He was DX with rectal cancer in Oct.09.
    He was a stage 2 and was given an illeostomy to give a chance to his colon to heal up and to receive mop up chemo. He got his reversal on Sept. 13, he was in the hospital for five days.
    I was expecting a long period of adaptation but was very surprised that things got moving normally after around two weeks post surgery. He is very happy to have his reversal and even happier that it was a complete success cancer wise and reversal wise. There are no two persons the same when it comes to what to expect after a reversal, that is what our surgeon told us. Wishing you both the best.
    Theresa
  • tiny one
    tiny one Member Posts: 465 Member
    Options
    I was diagnosed Feb 1, 2007. Had a resection Feb 19,2007, woke up with an ileostomy. It was reversed Dec 21, 2007. The bag spared me from diarrhea from chemo. I had radiation treatments also. My reversal was made very difficult due to the radiation I recieved. I had rectal narrowing. For 4 months after it was pure hell, I had BM's as much as 19 times a day, alot of soreness. I deal with bathroom issues on a day to day basis now. I use lomotil to help control the frequency. If I had not found the relief that I found from lomotil, I would have most likely have the bag put back on. I found the physical pain from the reversal far worse than any of the cancer treatment I had. This is a decision only you can make, give it a lot of thought. Good luck.
  • khl8
    khl8 Member Posts: 807
    Options
    tiny one said:

    I was diagnosed Feb 1, 2007. Had a resection Feb 19,2007, woke up with an ileostomy. It was reversed Dec 21, 2007. The bag spared me from diarrhea from chemo. I had radiation treatments also. My reversal was made very difficult due to the radiation I recieved. I had rectal narrowing. For 4 months after it was pure hell, I had BM's as much as 19 times a day, alot of soreness. I deal with bathroom issues on a day to day basis now. I use lomotil to help control the frequency. If I had not found the relief that I found from lomotil, I would have most likely have the bag put back on. I found the physical pain from the reversal far worse than any of the cancer treatment I had. This is a decision only you can make, give it a lot of thought. Good luck.

    I am 13 months post
    I am 13 months post reversal, and happy that I did it. Yes there were some issues in the begining and learning to train your sphincter muscle again is a challenge. I was off work about 1 week or so then back to the grindstone, I had urgency issues for awhile but those are few and far between now.
    Kathy
  • John23
    John23 Member Posts: 2,122 Member
    Options
    Angela -


    How well an ileostomy reversal goes depends a lot on how much colon
    was removed, and if the ileostomy is a "loop" or a "closed end" ostomy.

    A "loop type" is fairly easy as far as surgery goes, since the two ends
    that have to be reconnected are right there, poking out of the same
    surgical hole.

    A "closed end" type (what I have), is more complex. The same surgery
    that was needed to resect and form the stoma originally, will have to
    be performed again, since only one end is sticking out..... they'll have
    to locate the other end, and attempt to reconnect it.

    Anytime there is abdominal surgery, there are adhesions and hernias
    that form of consequence. I have experienced 4 intestinal blockages
    within the last three months from both the adhesions and hernias.
    My surgery was four years ago, and have never had blockages before;
    adhesions can grow and move with time!

    The problem of incontinence depends on the amount of colon that
    is left inside. There is an average of 5 foot of colon, and the less you
    have remaining, the less water will be removed from the fecal matter.

    They left me with one foot of colon; a reversal will most probably
    leave me with the same liquid output I now have, but no pouch to collect
    and hold it until I find a spot to empty it. That would mean a really
    unpleasant life-style!

    Also..... re-opening and having major abdominal surgery can also
    leave one vulnerable to more internal damage and bruising. Being
    left with erectile dysfunction is not conducive to good "quality of life"
    to any guy that's concerned about the way an ostomy appliance might
    look hanging off his side. Bruising and/or damaging organs, nerves,
    and muscles, is fairly common with any abdominal procedures.

    For what it's worth?

    After my initial operation, I wasn't left with an ostomy. I felt "normal"!
    Within the week, I was sitting on the toilet and doing what we normally
    do... But....The had to re-open me due to their error, and I had essentially
    the same surgery again, and they left me with an ileostomy.

    I hated the thing. I had so much trouble initially with sores and blisters
    from leakage, that it was a living hell. I pleaded for a reversal. I spent
    the first six months with a constantly leaking appliance, and a blistered
    skin that nothing was helping. I was wishing I had died on the table,
    than to have to live another day like that.

    I managed to figure out what all the nurses and aids couldn't, and
    resolved my problems. I now leave a two-piece appliance wafer
    on for two to three weeks, and change the pouch as needed. No
    leaks, sores, or blisters; It's become just another thing to do.

    The odds of suffering major problems from having a reversal that
    I don't have now, are tremendous.

    You should take the time to explore all the possible things that
    can go terrible wrong, before going into an operation like this.

    Even with a "loop type" ostomy, there are hazards, but you can't
    have a "loop type" forever anyway; they are meant to be temporary,
    and many are converted to permanent ostomy.

    If chemo is being done, it's easier on the rear-end, having an
    ostomy. Diarrhea is common and frequent with most chemo
    regimes; it's easier to empty a pouch than find a toilet, and you
    don't need Prep-H for a pouch.

    Take the time before taking the plunge!

    Best wishes for happy bowels!

    John
  • classicman
    classicman Member Posts: 34
    Options
    I got my reversal in March
    I got my reversal in March 2010, after having an Ileostomy for 9 months, I am still having some bathroom issues, but with fiber management and regular doses of Imodium, i ge by ok, still work full time, i do however wear a panty liner, just in case i have some leakage. but life is better than wearing that damn appliance.