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Stage 4 ostomy question ...

sfan428
sfan428 Member Posts: 32
edited March 2014 in Colorectal Cancer #1
When I was originally dx'd, my cancer appeared to be a stage two or "maybe" three and before the scans came back I had my initial surgical consult. Anyway, originally the game plan was to go in, remove the tumor and have me on a temporary ileostomy for "several months" before determining when to do a possible reversal. Now that this has been determined to be a stage 4 cancer and after reading some of the horror stories from some after the reversal I am seriously contemplating the idea of just making this a permanent ostomy during surgery. I mean honestly if my time is in any way limited I certainly do not want to be thinking about another surgery and dealing with bowel training when I could be out and about enjoying myself. I am just looking for some advice as I have another consult tomorrow and surgery scheduled for 9/8. Any advice is greatly appreciated.

Comments

  • Patteee
    Patteee Member Posts: 945
    I am not sure what the
    I am not sure what the difference is between a temporary and permanent ostomy? I mean mine was a temporary and I had a reversal, but I don't think there would have been anything different had mine been a permanent. My recovery was fine, I had no trouble with bowel issues. I think that depends more on where the resection is done.
  • khl8
    khl8 Member Posts: 807
    Please remember not all are
    Please remember not all are horror stories, I had the reversal and it went relativly easy. whatever you want to know I will gladly share.
    Kathy
  • sfan428
    sfan428 Member Posts: 32
    Patteee said:

    I am not sure what the
    I am not sure what the difference is between a temporary and permanent ostomy? I mean mine was a temporary and I had a reversal, but I don't think there would have been anything different had mine been a permanent. My recovery was fine, I had no trouble with bowel issues. I think that depends more on where the resection is done.

    You're probably right about
    You're probably right about the temp vs. permanent. I guess I meant the plan was for a temporary ileostomy and I am contemplating a permenent colostomy. The resection will be done very close to the sphincter but the surgeon believes that there should be room for a reconnect. I guess I am just looking to hear some positive stories from folks that have been through a rectal resection and a reconnect with no issues.
  • TxKayaker
    TxKayaker Member Posts: 176
    khl8 said:

    Please remember not all are
    Please remember not all are horror stories, I had the reversal and it went relativly easy. whatever you want to know I will gladly share.
    Kathy

    I had my reversal last
    I had my reversal last December and have not had one bowel issue.
  • neon356
    neon356 Member Posts: 137
    Tough question
    This is one of those situations where there really isn't a 'right' answer. As you hear over and over again from people here that everybody's different. Some have a lot of trouble with a reversal and others don't. I will tell you that if you choose a permanent ostomy there's an adjustment period of a few months to get used to it and then it's a piece of cake. There are times when having an ostomy is a real distinct advantage. Like you said, you can be out there enjoying yourself and not have to worry about bowel training or even needing a toilet. If you do decide to have the permanent ostomy discuss with your surgeon or ostomy nurse the best place to put it so it interferes as little as possible with belt line,clothing, whether you're left or right handed for ease of changing the barrier or pouch, etc. I've had a permanent ostomy for 17 years now, and with exception of the first few months of getting used to the routine and the stoma shrinking as the swelling goes down, I've had virtually no problems. Sometimes my spouse even wishes she had one so she wouldn't have to worry about going to the bathroom in a foreign country or on a trip of any kind. I kiddingly accuse her of having stoma envy.
    Good luck in making that tough decision,
    Carl
  • Lovekitties
    Lovekitties Member Posts: 3,364
    Everyone is unique
    There is no way for anyone to give you advise on this. Even those who have had reversal success cannot guarantee it for you.

    I would not think you would have to make a decision regarding temp or perm at this point unless your surgeon says he would do something different this time around.

    Other things can determine when/if you can have a reversal such as any after surgery treatment (chemo or rads). Most don't start those treatments until some months after surgery to allow complete healing. Then most don't plan reversal for some months after treatments are complete to give your body time to recover.

    Best thing is to talk to your surgeon about your thoughts. He/She may be better able to determine if you are a candidate for reversal after the initial surgery.

    Having a perm colostomy myself, I have found that it is not as big a deal as it first sounds. It just becomes a part of you. I know lots of folks really want the reversal. It was offered to me if I wanted to go the chemo/rads route first, then surgery, then maybe a temp colostomy, the maybe a reversal. For me, I chose to get the cancer out asap and not worry that I would have a perm colostomy. Life is still good.

    Best of luck with sucessful surgery and quick recovery.

    Marie who loves kitties
  • John23
    John23 Member Posts: 2,122
    Temp or perm?

    A temporary ostomy is created by yanking a section of intestine
    through the skin, and cutting the "loop" that's sticking out, in half.
    Both the end that will be ejecting waste, and the other end that's
    still connected to the colon, are sticking out in the same spot.

    To reverse that, the surgery is fairly simple, since both ends are
    right there. This type of temporary ostomy is a "loop type".

    A permanent ostomy is only the ejecting end sticking out.
    When you look at the stoma, there is one hole, not two
    as with the tempo...

    They called mine a "temporary", but the end they would have
    to reconnect to, is buried well below and on the opposite side
    of the ileostomy. It would take very major surgery (again), to
    do a reversal. This type of ostomy is a "closed end type".

    As far as problems? It depends on how much colon you have left,
    and if you still have all the rectal/anal parts and pieces in good shape.

    I only have about a foot of colon left, and the ileocecal valve
    was taken out along with the 4' of colon. A reconnect for me,
    will leave me running to the toilet. With the ileocecal valve missing,
    the digestive waste can flow though the body fairly quickly at times.
    Having to go empty the pouch prior to, 1/2 way through, and
    at the end of a meal, is too common. If I didn't have the pouch,
    I'd be running to the bathroom, not walking.

    If you have a "closed end type", there are also other risks of
    surgery, since adhesions, hernias, and bruised organs can be
    common with invasive abdominal surgery. One clip out of the
    prostrate can change your life.

    These are the things you should be discussing with your colorectal
    surgeon, and a second opinion never hurts.

    If you do plan to have it permanently, do make sure it's in the
    perfect spot for you. It should be about 4" below the beltline,
    and about 4" to the side (the belly-button is in the middle).
    It should not be on a fold of skin, or where the skin has an
    irregular surface.... And.... (what, more?)... the stoma should
    protrude from the skin by 3/4 to 1 inch. It will shrink over time,
    and having no less than 3/4 of an inch sticking out will make life
    much, much easier.

    Try the UOAA board and it's archives. There's a bunch of info
    there, some good, some bad, but info none-the-less.


    Take care!

    John
  • Barbie123
    Barbie123 Member Posts: 8
    ostomy bag
    My Mom was 91 when she was diagnosed with stage 3 cancer. She just passed away two weeks ago, one year after her surgery to remove the large tumor and some of her colon, ending up with a permanent colostomy. The doc and family decided not to put her through chemo at her age. Anyway, I thought maybe I could help with some advice about ostomy bags.

    I was with her every step of the way and helped her pick out the colostomy bags to use. We decided to go with the one piece, closed end, disposable ones. The ones they used in the hospital were open ended and you had to empty them and reuse them. It was very hard for her to do this and to close the clip at the bottom because of her arthritis.

    Anyway, she never had any problem changing the disposable ones, it was very easy, there was no smell because of the little filter and they were very convenient. She usually used two a day. Even at 91, she coped very well with it all.

    Barbie
  • Crow71
    Crow71 Member Posts: 679
    Don't worry about making
    Don't worry about making that decision yet. Consider it temporary and deal with the decision later. Will you be doing post op chemo? How's your liver these days?

    I'm 4 months out from surgery. I could have the reversal soon, but a recent ct scan shows the cancer is spreading and I really need to start chemo now. At some point in the future I'll have the choice about doing a reversal. I appreciate how straight forward and rational you are about time. Just remember to STAY POSITIVE. Believe that you will have loads of time.

    I hate it for those folks who have serious and lasting bowel problems after the reversal. But I suspect that the majority of reversals are normal. We just don't hear about them.

    Take care - Roger
  • AnneCan
    AnneCan Member Posts: 3,673
    Barbie123 said:

    ostomy bag
    My Mom was 91 when she was diagnosed with stage 3 cancer. She just passed away two weeks ago, one year after her surgery to remove the large tumor and some of her colon, ending up with a permanent colostomy. The doc and family decided not to put her through chemo at her age. Anyway, I thought maybe I could help with some advice about ostomy bags.

    I was with her every step of the way and helped her pick out the colostomy bags to use. We decided to go with the one piece, closed end, disposable ones. The ones they used in the hospital were open ended and you had to empty them and reuse them. It was very hard for her to do this and to close the clip at the bottom because of her arthritis.

    Anyway, she never had any problem changing the disposable ones, it was very easy, there was no smell because of the little filter and they were very convenient. She usually used two a day. Even at 91, she coped very well with it all.

    Barbie

    My condolences, Barbie
    Barbie,

    I am sorry to hear that your mother passed awy; my condolences to you, It is nice she had you every step of the way. Take good care!
  • WinneyPooh
    WinneyPooh Member Posts: 318
    Old leaky and having pooh on your stomach
    my reversal is the 25 th yeah
    Winnie
  • sfan428
    sfan428 Member Posts: 32
    Crow71 said:

    Don't worry about making
    Don't worry about making that decision yet. Consider it temporary and deal with the decision later. Will you be doing post op chemo? How's your liver these days?

    I'm 4 months out from surgery. I could have the reversal soon, but a recent ct scan shows the cancer is spreading and I really need to start chemo now. At some point in the future I'll have the choice about doing a reversal. I appreciate how straight forward and rational you are about time. Just remember to STAY POSITIVE. Believe that you will have loads of time.

    I hate it for those folks who have serious and lasting bowel problems after the reversal. But I suspect that the majority of reversals are normal. We just don't hear about them.

    Take care - Roger

    Thanks Roger, appreciate the
    Thanks Roger, appreciate the advice. The plan is to do post op chemo and I have one small spot my liver that is to be removed during surgery. Other than that liver is good. Best wishes on a successful chemo run.

    Shane