ileostomy reversal

tiny one
tiny one Member Posts: 465 Member
edited March 2014 in Colorectal Cancer #1
I was diagnosed with colon cancer in 07, stage 3, I had a resection and a temporary ileostomy. I underwent 5 and a half weeks of chemo and radiation, then 6 months of chemo. 10 months laters they reversed the ileostomy. I have frequent bathroom issues and pain. lomotil helps some. The radiation left me with vaginal shortening and scar tissue and narrowing rectally. I'm not coping well with this. Is this the way that I'll have to live the rest of my life. I'm only 50.

Comments

  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #2
    sending hugs
    I had a similiar outcome after my ileostomy reversal. It was awful. My life revolved around a bathroom and I was in constant pain. So 18 mos. after my reversal I made the hardest decision of my life and had a colstomy done. I was 48. Life is good now. Really. I went on a cruise when I was 7 weeks postop and even went snorkeling. I just went on another cruise in Dec. and went snorkeling again. I did enjoy this cruise better because it wasn't right after a surgery.

    I envy the people that have their reversal and do so well.

    Please email me if you want to chat.

    Maureen
  • tiny one
    tiny one Member Posts: 465 Member
    #3
    Moesimo said:

    sending hugs
    I had a similiar outcome after my ileostomy reversal. It was awful. My life revolved around a bathroom and I was in constant pain. So 18 mos. after my reversal I made the hardest decision of my life and had a colstomy done. I was 48. Life is good now. Really. I went on a cruise when I was 7 weeks postop and even went snorkeling. I just went on another cruise in Dec. and went snorkeling again. I did enjoy this cruise better because it wasn't right after a surgery.

    I envy the people that have their reversal and do so well.

    Please email me if you want to chat.

    Maureen

    Did you have chemo and radiation? If you did do you have any side effects from this? My radiologist said she didn't see any narrowing. My gynegologist says that I have vaginal shortening from the radiation. My surgeon through 2 procedures can tell that the radiation has caused narrowing and thickening in the rectal area, which is why I've had problems from the reversal. Unless I get to where I can't have any BM's at all I wouldn't put the bag back on. There are alot of foods I don't eat any more because it's not worth the pain.
  • Denise1966
    Denise1966 Member Posts: 90
    #4
    Hi Tiny One,
    I was diagnosed March '08 with stage 3 rectal cancer. I had 5 weeks of chemo/radiation before surgery, which shrunk the tumor totally, then I had my resection first with no bag, but then 3 days later I had a blockage for which I had another surgery that gave me my ileostomy. I had that for about 7 weeks and then had that reversed. I am still going through my 12 chemo treatments (I have 3 more left - I'm only doing 5 fu for these last few due to neuropathy). I have scar tissue in the rectum as the surgeon saw this before he reversed me. I have the narrowing of the rectum, but I do not have any pain. My bowel movements seem to be getting better, although I do still have bad days, mostly due to certain foods I eat. I control this with Immodium, it seems to work for me. I've only been reversed since August 6th 2008, so it's still trying to get back to my new normal. Have you tried adding fiber to your diet...like metamucil? My surgeon suggested that for me to try and bulk it up.
    Best Wishes.
    Denise
  • funnyguy
    funnyguy Member Posts: 89
    #5
    for what it's worth
    I went through the same regime that you describe in your first post (almost exactly time wise).

    I too have the rectal scar tissue and narrowing from surgery and radiation as my tumor was very low and I ended up with an internal J Pouch intended to slow things down.

    On and off again I have bouts with bathroom dependency (boy I wish there was a 12 step program).

    What I find works best for me anyway is to eat smaller meals, minimal greasy treats and keep immodium on hand. I've also found that walking each day keeps things consistent. If I back off from my 30 minute a day walk it all goes down hill in a day or two. Pain, etc......you know the drill.

    Hope this helps... and keep smilin'

    your semi-colon buddy!

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