New normal... Am I alone on this?

son of hal
son of hal Member Posts: 117
in Colorectal Cancer #1
So Ive had this illeostomy (recurrent rectal cancer stage II) for 4 1/2 months now and I'm in no hurry to get it reversed. I adapted to it allmost immediatly and really have no issues with it. I can eat whatever I want whenever I want with no ill effects and without any medicinal needs (Imodium),I can travel without bathroom breaks or concerns and I've only had a couple negative issues so far. I've heard about the horror stories after reversals and I'm wondering if it's worth it. Granted, I'm a man, in good health, happily married, not a beach go'er, don't swim much and rarely take my shirt off in public so the pouch hasn't factored into my physical image yet. I just wondered if anyone else had the option to reverse and chose not to. Take away the image part and this is quite an efficient method of waste disposal.... Has anyone done the reversal and regretted it? My "new normal" seems just as good as normal. Family and friends keep asking when am I going in for my next surgery (the takedown) and I just say I don't know yet but I think I have to decide soon.
CJ

Comments

  • John23
    John23 Member Posts: 2,122 Member
    #2
    CJ -

    It makes a big difference if you have an "end" or a "loop" Ileostomy.

    The "loop" (identifiable by the double lumen), is theoretically
    easier to reverse. It's a matter of the surgeon putting the two
    pieces sticking out of your side, back together and back inside.
    (not quite as simple as I made that sound)

    The "end" type of Ileostomy only has one section of the intestine
    sticking out. The other end is inside you someplace, stapled shut,
    and still connected to whatever it was connected prior to your
    surgery. The surgeon will have to open you up, locate that other
    end, and put 'em back together.

    The "end" type is obviously more invasive to "reverse", and carries
    the chances of more complications...

    Both surgeries will usually result in more adhesions and hernias,
    just as any type of abdominal surgery causes.

    If you have a "loop" now, and opt to keep the Ileostomy, surgery
    will be needed to eliminate that second portion of intestine sticking
    out. It's another surgery, stapling shut that 1/2 that's connected to
    whatever below, and stuffed back inside your abdomen. You may
    or may not end up with the stoma in the same location as it is now!

    All of this, are things you should be talking to your surgeon about.

    The increased amount of adhesions and hernias with each surgery
    are not a laughing matter (ask me). The more adhesions, the tougher
    future operations will be.

    You should also plan well ahead of any abdominal surgery, for
    a stoma in a new location. You'd want to make sure the stoma
    will be in the best spot for -you-. 4" below the belt line, and about
    4" to the side of your bod's center, is usually the optimum spot.

    "Below the belt line" affords the wearing of your usual clothing in
    the manner you're accustomed to. Off to the side and out of the
    way of your "stuff", is a no-brainer... ya'know?

    A good colorectal surgeon will have a "WOCN" mark off the
    best spot for you, and may have you wear a pseudo-pouch
    full of applesauce, to make sure it's a good spot.

    But ask the surgeon; spend some time prior to any surgery
    asking all the "what ifs" and "what fors". You do not want to
    leave anything to chance. Even if the surgeon promises you that
    nothing will be different when you wake up, you do not want
    to be surprised as I was.

    "YOU DID WHAT WHEN I WAS OUT?"

    Plan now, or pay later.

    My best to you.

    John
  • th_in_canada
    th_in_canada Member Posts: 46
    #3
    John23 said:

    CJ -

    It makes a big difference if you have an "end" or a "loop" Ileostomy.

    The "loop" (identifiable by the double lumen), is theoretically
    easier to reverse. It's a matter of the surgeon putting the two
    pieces sticking out of your side, back together and back inside.
    (not quite as simple as I made that sound)

    The "end" type of Ileostomy only has one section of the intestine
    sticking out. The other end is inside you someplace, stapled shut,
    and still connected to whatever it was connected prior to your
    surgery. The surgeon will have to open you up, locate that other
    end, and put 'em back together.

    The "end" type is obviously more invasive to "reverse", and carries
    the chances of more complications...

    Both surgeries will usually result in more adhesions and hernias,
    just as any type of abdominal surgery causes.

    If you have a "loop" now, and opt to keep the Ileostomy, surgery
    will be needed to eliminate that second portion of intestine sticking
    out. It's another surgery, stapling shut that 1/2 that's connected to
    whatever below, and stuffed back inside your abdomen. You may
    or may not end up with the stoma in the same location as it is now!

    All of this, are things you should be talking to your surgeon about.

    The increased amount of adhesions and hernias with each surgery
    are not a laughing matter (ask me). The more adhesions, the tougher
    future operations will be.

    You should also plan well ahead of any abdominal surgery, for
    a stoma in a new location. You'd want to make sure the stoma
    will be in the best spot for -you-. 4" below the belt line, and about
    4" to the side of your bod's center, is usually the optimum spot.

    "Below the belt line" affords the wearing of your usual clothing in
    the manner you're accustomed to. Off to the side and out of the
    way of your "stuff", is a no-brainer... ya'know?

    A good colorectal surgeon will have a "WOCN" mark off the
    best spot for you, and may have you wear a pseudo-pouch
    full of applesauce, to make sure it's a good spot.

    But ask the surgeon; spend some time prior to any surgery
    asking all the "what ifs" and "what fors". You do not want to
    leave anything to chance. Even if the surgeon promises you that
    nothing will be different when you wake up, you do not want
    to be surprised as I was.

    "YOU DID WHAT WHEN I WAS OUT?"

    Plan now, or pay later.

    My best to you.

    John

    interesting
    Interesting information John. I have a "temp" ileostomy (for 2 years now) and it's a loop as it was not totally cut through. My onc was never in a hurry for the reversal as she did not want to interrupt my chemo treatments. Now that I'm done treatment, I asked her and she doesn't feel that's it's warranted at this time (because of my bad prognosis). No one ever mentioned to me about needing surgery to eliminate the second portion or to make it "permanent" what ever that would mean although I wondered about it.
    Due to some of the issues I've read about reversals I decided I'm happy keeping the bag. I really have no problems with it. I don't dare go in hot tubs but I never was much for those anyways so I don't miss them.

    Tricia
  • tommycat
    tommycat Member Posts: 790 Member
    #4
    Hmmmmm
    Well it is a mixed bag so to speak ;)
    For me, my lifestyle is pretty active and the bag---which I had for a full year--prevented me from doing some of the things I enjoy doing, for example body surfing or roughhousing with my young children. I also like to sleep on my stomach and that was a hard habit to break.
    However the learning curve post takedown was a 'curve' of almost a full year. There are still issues that crop up that I never had to contend with when I had the bag.
    I've learned on this Board that many people live very comfortably with the bag, and it doesn't seem to hinder them in any noticeable way.
    Just sharing....
  • son of hal
    son of hal Member Posts: 117
    #5
    John23 said:

    CJ -

    It makes a big difference if you have an "end" or a "loop" Ileostomy.

    The "loop" (identifiable by the double lumen), is theoretically
    easier to reverse. It's a matter of the surgeon putting the two
    pieces sticking out of your side, back together and back inside.
    (not quite as simple as I made that sound)

    The "end" type of Ileostomy only has one section of the intestine
    sticking out. The other end is inside you someplace, stapled shut,
    and still connected to whatever it was connected prior to your
    surgery. The surgeon will have to open you up, locate that other
    end, and put 'em back together.

    The "end" type is obviously more invasive to "reverse", and carries
    the chances of more complications...

    Both surgeries will usually result in more adhesions and hernias,
    just as any type of abdominal surgery causes.

    If you have a "loop" now, and opt to keep the Ileostomy, surgery
    will be needed to eliminate that second portion of intestine sticking
    out. It's another surgery, stapling shut that 1/2 that's connected to
    whatever below, and stuffed back inside your abdomen. You may
    or may not end up with the stoma in the same location as it is now!

    All of this, are things you should be talking to your surgeon about.

    The increased amount of adhesions and hernias with each surgery
    are not a laughing matter (ask me). The more adhesions, the tougher
    future operations will be.

    You should also plan well ahead of any abdominal surgery, for
    a stoma in a new location. You'd want to make sure the stoma
    will be in the best spot for -you-. 4" below the belt line, and about
    4" to the side of your bod's center, is usually the optimum spot.

    "Below the belt line" affords the wearing of your usual clothing in
    the manner you're accustomed to. Off to the side and out of the
    way of your "stuff", is a no-brainer... ya'know?

    A good colorectal surgeon will have a "WOCN" mark off the
    best spot for you, and may have you wear a pseudo-pouch
    full of applesauce, to make sure it's a good spot.

    But ask the surgeon; spend some time prior to any surgery
    asking all the "what ifs" and "what fors". You do not want to
    leave anything to chance. Even if the surgeon promises you that
    nothing will be different when you wake up, you do not want
    to be surprised as I was.

    "YOU DID WHAT WHEN I WAS OUT?"

    Plan now, or pay later.

    My best to you.

    John

    Thanks for the info, John.
    Thanks for the info, John. Y'know, I can't picture having this below the waistline. Wouldn't it be in the way for personal functions (intimacy)? Can you wear jeans with it there? Right now it is about 2 inches to the side, almost parallel with my navel and seems like a good location. I can wear most clothing without it showing and tape the end up to my body for (activities). I am overdue for my follow-up with surgeon so I know this (takedown)will be the hot topic. This is all very strange since I have had a couple days where I had output (loose watery stool) in the normal manner through my rear. I was freaked out and called the doc whose nurse then said that's kinda normal. If that was any indication how things would be (post takedown) then no thanks. I got the urge to go then wham, that was it. No time to make it to any bathroom. I had diahrea about six times in one afternoon and my a$$ was raw. That has happened twice in four months and I'm kinda taking it as a warning... My surgeon is a top-notch specialist and he seems to think I should have good control after takedown but those two incidents made me doughtfull. Anyway, I'll have more information after my follow-up. I'm just seeing if others prefer the bag over poor functioning OME (original manufacturer's equipment)...
    I also wonder what percentage of folks have it above or below the waistline...
    Thanks, take care.
    CJ
  • son of hal
    son of hal Member Posts: 117
    #6
    tommycat said:

    Hmmmmm
    Well it is a mixed bag so to speak ;)
    For me, my lifestyle is pretty active and the bag---which I had for a full year--prevented me from doing some of the things I enjoy doing, for example body surfing or roughhousing with my young children. I also like to sleep on my stomach and that was a hard habit to break.
    However the learning curve post takedown was a 'curve' of almost a full year. There are still issues that crop up that I never had to contend with when I had the bag.
    I've learned on this Board that many people live very comfortably with the bag, and it doesn't seem to hinder them in any noticeable way.
    Just sharing....

    Thanks......

    Thanks......

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