one week out from ileostomy reversal...no control

ccartwri
ccartwri Member Posts: 82
edited March 2014 in Colorectal Cancer #1
hi folks
as you know, i had my ileostomy take down last saturday. and i finally did poop on tuesday. as of thursday, it does not stop. NO control. i am wearing a pad and a diaper. it oozes out with no warning. i am losing my mind. i emailed with my surgeon and have started Benefibre and immodium since yesterday. not better today.
any advice? stories of how long it took to get your life back? (well, let's not go that far!!!)
claudia

Comments

  • KathiM
    KathiM Member Posts: 8,028 Member
    #2
    I am just sending my hugs, I never had an 'ostomy', but still occasionally have bouts with loose stuff. Give your plumbing a little time, it hasn't been called to action for awhile...even those of us who had continuous use of ours have troubles... ( I have no rectum or sigmoid colon).
    Just stock up on A and D ointment, blot don't wipe, and realize this is only temporary...
    Oh, and just remember, what burns going in (salsa, etc) may burn coming out....and cheese and bananas are natural consipators (hehehehe)
    GREAT BIG HUGS to a VERY BRAVE gal!
    Hugs, Kathi
  • KathiM
    KathiM Member Posts: 8,028 Member
    #3
    I am just sending my hugs, I never had an 'ostomy', but still occasionally have bouts with loose stuff. Give your plumbing a little time, it hasn't been called to action for awhile...even those of us who had continuous use of ours have troubles... ( I have no rectum or sigmoid colon).
    Just stock up on A and D ointment, blot don't wipe, and realize this is only temporary...
    Oh, and just remember, what burns going in (salsa, etc) may burn coming out....and cheese and bananas are natural consipators (hehehehe)
    GREAT BIG HUGS to a VERY BRAVE gal!
    Hugs, Kathi
  • pink05
    pink05 Member Posts: 550
    #4
    Hi,

    I don't know how much I can help you out. My dad didn't have and ileostomy, but he did have very uncontrollable bowel movements for several days. After a while, I think your body adjusts, but it may take some time. Then again, everyone is different. Sounds like your reversal was a success. Now, it's time to train your bowels to slow down a little. My dad's surgeon didn't recommend any type of fiber supplement, but I have read that this does help to train your bowels to slow down.

    Let us know if what you are taking is working.
  • CAMaura
    CAMaura Member Posts: 719 Member
    #5
    Oh Claudia, I am so sorry for you. I don't know what to say. I am wondering if it could be the diet, or that your muscles are not remembering as they did before? I don't know. You are so strong. Please remember that. This, I am SURE, is just a phase which your body or digestion is reacting to . Call on every doc you know of and ask for answers. There has to be some!! All the best to you and I am certainly wishing you good thoughts. Take care - Maura
  • drmrgirl47
    drmrgirl47 Member Posts: 129
    #6
    Hi Claudia,
    I had an ileostomy reversal done approx. 1 1/2 years ago and still I am adjusting to excessive bms. However, in the beginning, I also had a few accidents and had to wear that lovely diaper. But as time went on it got a hell of a lot better. It really does. Believe me. I also do not have a rectum. I am not sure if you do or not. Anyway, I started out on Lomotil. I used to take 13 a day. Now, only if I have to go out to dinner or I want to eat something that I know will give me problems, I take one or two. I go most days with no Lomotil at all. And I didn 't believe my surgeon, but I really did get better. Give yourself some time. My doctor also prescribed the Benefibre when I got home from the hospital and oh, boy, I stopped taking that. So just have some patience honest, things get better. As KathiM mentioned,bananas, rice and cheese did help me also. Good luck and email me if you need to. Peace. Annette
  • jsabol
    jsabol Member Posts: 1,145 Member
    #7
    Hi Claudia,
    Hope the benefiber and immodium are starting to work. My dad lost a huge part of his sigmoid and some rectal tissue during his original surgery, and he, too, was losing feces at first. He became regulated on 3 times a day metamucil pretty quickly...took it religiously before each meal (including carrying the handy travel packs) and it worked great for him. His only long term problem was never thinking he could just pass gas; he always played it safe and visited the john first!
    Sounds like a visit to your doc, or the ostomy clinic may be in order. It's so soon after your surgery; do you have any rectal exercises for strengthening? Hope things get better fast. Judy
  • goldfinch
    goldfinch Member Posts: 735
    #8
    claudia,
    just writing to say "hang in there!" it will get better. it's very early in your recovery. each month you will notice an improvement. possibly even sooner. it is a long process but worth it. it's been more than a year and a half for me and it's hard to remember everything i did to improve things. i was also dealing with chemo, so that complicated things, what with chemo constipation and diarrhea. i have bms 3-4 times a day. more often when i'm dealing with chemo effects. follow your docs advise. a web site that i found way too late, but was very helpful is jpouch.org. they all have had their whole colons removed because of ulcerative colitis, and they have found ways to manage very well.
    Mary
  • steved
    steved Member Posts: 834 Member
    #9
    I am coming up to the one year mark after ileostomy reversal. it is always hard to compare notes as it is different for everyone and particulalry depends on how much bowel was taken out and where it was.

    I had a rectal excision so I was very religious about doing pelvic floor exercises while I had my ileostomy so sphincter control was less of a problem (this may be something you neeed to work on- lots of practicing squeezing as teh voluntary anal sphicoter gets very lazy if you haven't used it for a while).
    Then it is a matter of experimenting wiht food and meds. I started off on loads of imodium and have cut it down over a year to one every 2-3 days. Different people respond to fibre differently but bulking products help a lot. Different foods will also affect you different;y- experiment but be prepared for some bad reactions- I have become less tolerant of lactose since my op so cheese and milk causes problems where as for otehrs cheese is great.

    It does improve but takes time- it is very early days yet. I saw improvements week by week intially and they have now slowed to month by month but do continue to come. I have to admit I had moments of wishing I still had my ileostomy - it seemed like less hassle but now it is great to be intact again so try and bear with it.

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