ileostomy reversal

funnyguy
funnyguy Member Posts: 89
edited March 2014 in Colorectal Cancer #1
Hi all - I'm a rectal cancer survivor and well along my path to an ileostomy reversal. As those of you familiar with this can imagine, I've had my plumbing re-routed and reattached. J-pouch style.

Can anyone offer their experiences with this? On what to expect? On what to prepare for?

My reversal will be occurring about 8 months after initial surgery. So it has been awhile.

Comments

  • goldfinch
    goldfinch Member Posts: 735
    #2
    Funnyguy,
    I think this can be a long answer, which is why you may have not gotten a response.
    Everyones recovery is different. I had my reversal 14 months after the original. I had to complete chemo first (i choose to complete chemo). When I thought I was cured I had it reversed (HAH on me!).
    It probably took a good LONG year or more before I felt almost normal. It's good now, as long as I'm not getting chemo (which isn't very often)
    You need to follow your docs instructions, later in recovery, I found metamucil wafers a life safer. Really helped form things up. But, you can't start off with this.
    Figure out what foods cause the most leakage. Initially it may be fresh, raw fruits and vegies, salsas, spicy foods. Again, everyone is different.
    THere is a site for jpouch folks. Most of these folks had their whole colon removed for irritable bowel or similar problem. They've been suffering with pain for a long time. They have many suggestions that I found helpful, but it was almost 3 years ago, so I can't remember them all. SHAZ ostomy page is a great site. If you type her name in her site will pop up. She has a separate discussion board for jpouch folks.
    Good luck!
    Mary
  • davidsonxx
    davidsonxx Member Posts: 134
    #3
    At first you will have a lot of urgency and a lot of bowel movements. I alternated between constipation and diarehea. You may have some control problems. This first period is the hardest. You have to retrain your body how to function properly and it takes time so be patient. Watch your diet. I found that I was hyper sensitive to anything that even mildly bothered me before my surgery. I also found fiber to be a big help. You have to heal and let all the swelling go down before you start using any kind of fiber. You don't want to cause a blockage by using it too soon. I also found Tucks pads to be helpful. They are a lot more gentle on an irritated rear than paper.

    Over time things will get better but it can be a long haul. I was fortunate. Even though I had rectal cancer my tumor was high enough that I didn't need a j pouch. Good luck and hang in there. The battle is almost over.
  • ninthave
    ninthave Member Posts: 12
    #4
    Hi there, I had my reversal 13 months ago. No J pouch though, it was too low I believe. The first 6 months were really hard, physically and emotionally. I was ready to start living again and was stuck around the bathroom a lot. Lots of small bms, and burning from irritation. A & D ointment was good to sooth. I had a lot of extremes too, constipation to diarhea, I think the remaining colon gets confused on managing fluids. I'm sticking to a pretty low fat mild diet. I started with fiber supplement at about 6 months, but eventually stopped,it started to make constipation worse. Its frustrating when you think you've figured it out and then it changes!

    The whole trick is to get your system to empty large amounts all at once w/o the rectum. I eat at least one large helping of cooked veggies a day, that type of fiber seems to work good. I tend to still have 1 to 4 hour bouts each day to get my colon to empty, but once that happens it calms down.

    Its been hard to continue my line of work, in an office call center with what Ive been left with, but hopefully it'll be better for you. Everybody is different, and I know a lot of people do a lot better than I have. Keep us posted.

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