Looking for colostomy advice

Eryan330 Member Posts: 6

Hello.  I had stage 3 colon cancer and underwent surgery to remove the tumor in Jan. (Did chemo/radiation prior)  I was also given an ileostomy bag for 2 months then I had it reversed 13 weeks ago.  Unfortunately, I have 30-60 bowel movements a day, every day, and my surgeon informed me that I would not improve due to a lack of blood flow in my colon.  So I chose to go with a colostomy bag and to have my rectum removed.  Surgery is scheduled for the end of the month.  I was wondering if anyone had any advice to pass along that you might have had to learn the hard way.  Some bit of advice that the doctors and surgeons never told you about that may be helpful for me.  I'm hoping that it's basically the same as dealing with an ileostomy bag but I could be wrong.  Thanks for any and all advice.  Happy 4th of July.  


  • Trubrit
    Trubrit Member Posts: 5,754 Member
    Welcome to the forum, Eryan

    I can't help with any advice but there are many here who can. I just wanted to say welcome. Its a sorry club to join, but this is definitely the place to get help, support, and make friends who are in the same boat. 

    The forum can run kind of slow, especially the weekends, so I thought I would share a post to keep you going. It started way back in 2003, and normally, I wouldn't link to something too old; but after the first three posts, the rest are replies from June of this year. 


    Good luck with all that you are about to go through. 


  • John23
    John23 Member Posts: 2,122 Member
    edited July 2016 #3


    You can click on my name and read my bio... My "blog" section has some info regarding Ostomy problems, etc.

    You can also get some decent info at the UOAA website!

    Usually with an Ileostomy, they remove the ileocecal valve.

    The valve serves two purposes:
    1. Keeps the flow moving towards the colon and stops contamination from the colon into the ileum.
    2. Helps control the flow from the ileum into the colon.

    If the flow is uncontrolled, the ileum doesn't have a chance to absorb as much of the liquid and it passes through and into the colon, where the output is much too liquid....

    Now, assuming that your Ileocecal valve wasn't removed during the Ileostomy surgery.... Your surgeon / physician should have advised you to limit your intake of liquids, especially during meals. The intake of liquid will pass through your system very quickly Ileocecal valve or not, and it will push food product with it. The result will be as if you have diarrhea.

    As far as the removal of the rectum? I wouldn't be too hasty. You would want to make sure they leave the sphincter muscles intact. If they are removed, your quality of life will suffer. Check the UOAA website for their comments regarding that. They can remove the colon up to the rectum, and leave everything else in; it's an option your colorectal surgeon should have informed you about.

    A colostomy is easier to maintain than an Ileostomy, and with a colostomy you can make use of the irrigation option, making life much, much easier. But you'll still have a watery output unless you regulate your intake of liquid. It's not an easy task either, since too little hydration can land you in the ER for dehydration (BTDT). You'll have to experiment.

    If I can ever be of help, just drop me a note...

    I wish you the best,



  • Helen321
    Helen321 Member Posts: 1,451 Member
    Hi, the colostomy is fine, I

    Hi, the colostomy is fine, I've heard it's easier than an ileostomy.  I would say make sure they mark you low enough that you don't have to deal with the bag sticking up over your clothes.  That was the most annoying part. I had to buy all new clothes as I wore a lot of low riser clothes.  Also don't settle for the bag they give in the hospital.  That's the cheapest and not necessary the most convenient.  I use the two piece disposable system which is peel and throw out.  Very easy.  I had my rectum removed in my first surgery which was no big deal but do talk to them about the chance of getting in there and having to remove your anus (the muscle) because that is a whole different horrible ball game and changes everything.  I had to have that in my second surgery and that was not at all a good thing.  Make sure they are very clear about the chance of having to remove that if they are afraid of leakage.  But the rectum is really no big deal, they just pull your colon down in its place.

  • toddi1973
    toddi1973 Member Posts: 41 Member
    j-pouch ?

    Hi Eryan,

    have you looked into the j-pouch option ? That would allow you to have the colon removed (solving the blood flow issues) but the 'plumbing' stays the same. The surgeon builds an internal reservoir out of small intestine tissue that gets stapled to your rectum. Thats what I had done and I personally prefer it to the stomas that I had in between surgeries. Just another option to look at before you consider the permanent removal of your rectum.


  • John23
    John23 Member Posts: 2,122 Member


    Please go to the UOAA forum and ask about the various options, like the "J-Pouch"?

    You can find much benefit from hearing from many others that have BTDT with some of the options!

    Best wishes for you,



  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    edited July 2016 #7
    like John said...

    But I would add that three things I used could at time really make a difference in my output. Immodium, Lomotil, Opium (yes - tinture of opium) and even Metamucil made a difference in my output.  You might look at the MD Anderson Poop Protocols:


    basically almost anything that works is better than surgery - now to find something that works...

    Right now I use nothingand am fairly happy with my ileo.  Well at least we seem to be getting along just fine - in truth I hate the little ****, but he helps keep me alive...


    best wishes,