Ostemy reversal, what to expect?

JanJan63
JanJan63 Member Posts: 2,478 Member
in Colorectal Cancer #1

Hi, me posting again. It'll be a long time before I can have it reversed but I'm trying to get rid of whatever worries I possibly can. Having cancer is enough of a worry in general.

I'm wondering how often the reversal goes well as far as the system starting back up again. I spoke to my surgeon about if the amount of time after getting the ostemy had anything to do with the success rate for having it fire back up again easily and quickly and he said it didn't seem to make a difference.

After my resection surgery I had two abcesses and they were found when my system shut down in one area, which they call a blockage and had me really worried. They were saying that the same thing can happen after the ostomy reversal. They said they try the patient with liquids and gradually food is introduced and, if you have any areas that shut down (blockage), they stop feeding you for twenty-four hours and start over again. Has this been anyone else's experience?

I experienced terrible vomiting when I had the 'blockages' caused by the abcesses and I'm wondering if that's what I could go though again and how often that happens or if it usually it goes well. 

Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #2
    Flip the coin

    There is no way to know in advance how successful a reversal will be.

    I believe in another post you mentioned that you have had IBS for a long time.  This may or may not have an impact on success.

    I have a perm ostomy...reversal was never an option.  I find that I can live a full life and do what I want.  It does not hinder my activities. 

    Some folks here have had reversal with good success.  Some have had sporadic urgency issues which impacts their eating habits before going out or in eating out.  Some have not had success and actually had the reversal reversed in order to have a more normal life.

    Unfortunately with all things connected with this disease, there are no guarantees.

    Don't let worry about this take up space in your life right now.  As you say, it will be a while before it can even be considered.

    Marie who loves kitties

  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    #3
    gosh, there are soooo many

    gosh, there are soooo many things that can go wrong, as you have already experienced.  but that does not mean your reversal won't be flawless!

    don't get too worked up about it and you don't want to hear my story. yikes!  i was feeling like anything that could go wrong was going wrong.   here i am years later with a permanent ileo and life s good!

    there is a forum on another board that just discusses reversals that might be worth perusing.

    https://www.uoaa.org/forum/viewforum.php?f=25

     

    best wishes,

    rick

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #4

    My reversal was a success and they had even removed my rectum and made a j-pouch.  My hospital stay was 7 days because they wouldn't let me go home until having a bowel movement and will not let you eat until you do.  Everyone is different on success afterward.  I'm still dealing with going to the bathroom 10-15 times on most days, however, that doesn't mean you will have problems.  If you are going to have issues after surgery the best place to be is in the hospital.  You shouldn't anticipate any complications as most go through without any problems.

    Kim

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #5
    Annabelle41415 said:

    My reversal was a success and they had even removed my rectum and made a j-pouch.  My hospital stay was 7 days because they wouldn't let me go home until having a bowel movement and will not let you eat until you do.  Everyone is different on success afterward.  I'm still dealing with going to the bathroom 10-15 times on most days, however, that doesn't mean you will have problems.  If you are going to have issues after surgery the best place to be is in the hospital.  You shouldn't anticipate any complications as most go through without any problems.

    Kim

    Thanks for the responses!

    I almost want to keep my ostemy because it's been so nice to not have to worry about IBS but I hate the bag and the skin irritation and having the thing puff up at the worst times. Occasional accidents, too. And it always shows through my clothes unless they're really loose.

    But I'm scared of how tough it's going to be after the surgery.

  • TxKayaker
    TxKayaker Member Posts: 176
    #6
    JanJan63 said:

    Thanks for the responses!

    I almost want to keep my ostemy because it's been so nice to not have to worry about IBS but I hate the bag and the skin irritation and having the thing puff up at the worst times. Occasional accidents, too. And it always shows through my clothes unless they're really loose.

    But I'm scared of how tough it's going to be after the surgery.

    I hated mine and could not

    I hated mine and could not wait unitl I had a take down. My only fall back is that I had a two week hospital stay because my bowel took it's time to wake up after 6 months.

    Surgery was a long time because of all the scar tissue the doc had to deal with.

    Happy now my take down was in 2009 ....no problems since ...

     

    Go for it...

     

  • Helen321
    Helen321 Member Posts: 1,459 Member
    #7
    JanJan63 said:

    Thanks for the responses!

    I almost want to keep my ostemy because it's been so nice to not have to worry about IBS but I hate the bag and the skin irritation and having the thing puff up at the worst times. Occasional accidents, too. And it always shows through my clothes unless they're really loose.

    But I'm scared of how tough it's going to be after the surgery.

    I have a permanent one and

    I have a permanent ostomy and I'd get rid of it in a minute mostly because I'm a bit vain and miss seeing my abs.  I mean I'm used to it now but why live with it when you don't have to.  As for the bag showing and all that, if your insurance covers the bags, a two piece peel and stick system with opaque bags will solve that problem.  I was using the Esteem systerm by Convatec but the tape pulled at my skin but now I'm using Esteem by Coloplast which is for sensitive skin and has no tape.  Mine rarely shows under my clothes and no puffing because the system is not made of plastic like the one piece.   Minimal accidents too because you keep up with the pouches on bad days. No clip or washing either, it's a stick and go system where you just throw away the pouches and stick another on.  I use alcohol free baby wipes to clean the area.  Also there are powders for the skin that you should be using or accessories that will help protect the skin while it heals.  You should never deal with raw skin.  I rarely have raw skin since I use the powder when necessary.  There are special wipes that you put over the powder to make the wafer stick.    If you're paying for the bags though, this would be very expensive. 

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #8
    Helen321 said:

    I have a permanent one and

    I have a permanent ostomy and I'd get rid of it in a minute mostly because I'm a bit vain and miss seeing my abs.  I mean I'm used to it now but why live with it when you don't have to.  As for the bag showing and all that, if your insurance covers the bags, a two piece peel and stick system with opaque bags will solve that problem.  I was using the Esteem systerm by Convatec but the tape pulled at my skin but now I'm using Esteem by Coloplast which is for sensitive skin and has no tape.  Mine rarely shows under my clothes and no puffing because the system is not made of plastic like the one piece.   Minimal accidents too because you keep up with the pouches on bad days. No clip or washing either, it's a stick and go system where you just throw away the pouches and stick another on.  I use alcohol free baby wipes to clean the area.  Also there are powders for the skin that you should be using or accessories that will help protect the skin while it heals.  You should never deal with raw skin.  I rarely have raw skin since I use the powder when necessary.  There are special wipes that you put over the powder to make the wafer stick.    If you're paying for the bags though, this would be very expensive. 

    Thank you

    I'm sorry you have a permanent one, that's really unfortunate.

    My stomach is such a mess form the surgery and infect after that I'm not worried how it looks. I think having abs is in the past. I asked my nurses that look after the wound when i can start doing sit ups to get my stomach looking better and they laughed. They said it will probably be impossible. I'll try, though.

    We do have insurance that covers most of the cost of the bags. I use Convatec Natura. I do use the powder which makes it feel better but I don't use it until I'm changing the pouch. If I go too long without changing the pouch it gets quite irritated at the botom edge just around the stoma. And sometimes under the adhesive. 

    I usually don't have accidents but when I do it seems to be a few in a short period of time. I think I get complacent. Or someitmes it's in the middle of the night and I'm not fully awake.

    I'll check into the ones you use. Usually it's fine but some days it just puffs up over and over and I'm scared to empty the air by burping it because that never seems to go well.

    I have a love/hate relationship with it. I love eating whatever I want and not dealing with IBS but I hate worrying about it constantly and finding myself always patting it to see if it needs to be dealt with. Or emptying it somewhere in public and leaving that creepy smell that can't be diffused with spray. Or suddenly realizing that it's puffed up like a balloon. Even when it's empty it's never truly flat.

    Thank you for your help and suggestions!

    Jan

  • DD3
    DD3 Member Posts: 136 Member
    #9
    My wife had a temporary

    My wife had a temporary ileostomy for about six months before her take down.  She had a tough time with it.  More about having the ostomy.  Really affected her self esteem.  I could certainly understand.  So, it was a long six months for her.  We joined a support group to help us through this time. 

    After the take down?  Oh boy.  I have come to the conclusion no two people are alike and docs tend to generalize.  Here is my wife's results.  Her colon woke up rather quickly (like the next day) and the sense of urgency was incredible.  Seconds matter, seriously.  Intitially she was going 20 times a day.  It was trail and error with diet and immodium to help with the consistancy.  I won't lie, the first couple of months was rough.  Very.  Had to be aware of the location of toilets in public locations.  Things slowly and I mean slowly got better.  We are coming up a year post take down and things are good.  Not back to normal, but very manageable.  Immodium is now used very rarely and she pretty much eats what she wants.  She does take metimucil everyday as that seems to help.  As she says "I don't miss tempe."  That was her ostomies name, short for temporary.  We have come to the conclusion that this as of now may be our new normal. New normal is going 4-6 times a day. We still have some bad days, although they seem to be few and far between.  Life is good.... I wish you well and patience is the order of the day after your take down.

  • Helen321
    Helen321 Member Posts: 1,459 Member
    #10
    JanJan63 said:

    Thank you

    I'm sorry you have a permanent one, that's really unfortunate.

    My stomach is such a mess form the surgery and infect after that I'm not worried how it looks. I think having abs is in the past. I asked my nurses that look after the wound when i can start doing sit ups to get my stomach looking better and they laughed. They said it will probably be impossible. I'll try, though.

    We do have insurance that covers most of the cost of the bags. I use Convatec Natura. I do use the powder which makes it feel better but I don't use it until I'm changing the pouch. If I go too long without changing the pouch it gets quite irritated at the botom edge just around the stoma. And sometimes under the adhesive. 

    I usually don't have accidents but when I do it seems to be a few in a short period of time. I think I get complacent. Or someitmes it's in the middle of the night and I'm not fully awake.

    I'll check into the ones you use. Usually it's fine but some days it just puffs up over and over and I'm scared to empty the air by burping it because that never seems to go well.

    I have a love/hate relationship with it. I love eating whatever I want and not dealing with IBS but I hate worrying about it constantly and finding myself always patting it to see if it needs to be dealt with. Or emptying it somewhere in public and leaving that creepy smell that can't be diffused with spray. Or suddenly realizing that it's puffed up like a balloon. Even when it's empty it's never truly flat.

    Thank you for your help and suggestions!

    Jan

    Yours is a snap on and so the

    Yours is a snap on and so the circle doesn't help with clothes.  I would wear a loose dress with those but not pants.  I tried the snap ons and had the same problem with the bag showing through my clothes.  Try the peel and stick and see how it goes.  If you end up having to use the convex wafer, same idea, it shows through your clothes.  I don't have flat abs but I still miss seeing mine without the bag.  I can't do a situp anymore but my friend said to try standing crunches where you bend forward.  A situp while standing.  lol  If you just had surgery though, you want to give your body time to heal, there's no rush for that.  The good thing about public bathrooms is no one knows it was you!  lol  Also I never throw my bag out in the actual bathroo, I use a garbage can outside.  I rarely have to change the bag in public but I always carry two supermarket bags in case.  The rashes definitely come during periods of complacency and also from the tape on the Convatec wafers.  Sometimes you just don't feel like dealing with the stuff.  That's how I end up having to use the powder too.  Most times though, my skin is very healthy.  Now that I'm tape free, my skin feels much better.  At first I was worried that the coloplast wafers wouldn't stick but they stick just fine.

  • wts
    wts Member Posts: 40 Member
    #11
    My reversal has gone really

    My reversal has gone really well. I was in the hospital 5 days and no issues. Only issue I have is rather than going to bathroom several times a day, I don't seem to go enough.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #12
    wts said:

    My reversal has gone really

    My reversal has gone really well. I was in the hospital 5 days and no issues. Only issue I have is rather than going to bathroom several times a day, I don't seem to go enough.

    So for a while after it'll be

    So for a while after it'll be just like before when I had IBS. I already know where most public bathroms are thanks to that.

    Thanks for the responses everyone!

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