Facing a Second Ileostomy or Permanent Colostomy Decision

Rectal cancer, surgery, temp ileostomy for a year. Had reversal for 4 months, still going through painful “bowel transition.” Cancer is back. Surgery again, may face the choice of a permanent colon ostomy or try a temp ileostomy again. The first ostomy was very difficult with skin burn, leakage, and scar pain. Getting used to using the bowel again has been dull ache pain, incontinence, clustering, etc. I have been told a second reversal will be worse than the first due to more scar tissue, less rectum left, etc. So, possible choice: go with temp again and deal with what I know… again, or go for a perm colostomy? Thoughts?

I am sorry your cancer returned.

I also had rectal cancer and was supposed to get a temporary ileostomy and reversal. However, my pelvis was filled with infection and there was extensive scar tissue, so the surgeon made a "game time decision" to give me a permanent colostomy.

I am very happy he did. I think ileostomies are more difficult to deal with (more liquid output, output is more acidic, you need to worry more about what you eat and hydration, more frequent emptying, etc.).

I find my colostomy to be easier to deal with than my urostomy. Weigh that against the difficulties of another reversal.

This time around, make sure they place the ostomy away from scars. Perhaps higher would be better. My ostomies are about 3 inches above my belly button and sit just inside the rib cage, away from all the surgical scars and bumps.

G-Day paulachapman22,

Totally agree with Susan. Go for the final operation, get your colostomy, and start to enjoy life. Good luck, sending you good vibes. Keep safe.

Regards, IGGIE

Thanks for the positive message, Iggie! May I ask a couple more questions? Healing from the colostomy—time frame, pain, difficulty? You seem very positive; how did you wrap your head around having a bag for life? I really took an emotional hit even with my temporary ileostomy, which I had for a year….

G-Day Paula,

I have an ileostomy, not a colostomy, but the healing times are around the same. I was free of pain after about 2 months, but the pain wasn't debilitating—just enough to let you know you had just been through an operation. The operation depends on whether your surgeon uses a less invasive method of opening you up more.

I got my head around it all by knowing the outcome was going to be a lot better than my problem before that was the reason for the operation in the first place.

If you want fewer operations in your life, go for the final stoma; that means less invasion.

Pick a spot on your belly that is the flattest with no scar tissue. Also, get all the companies that make the bags to send you free samples for you to try each one to be able to find the one that is best for you.

We are all here for you, so ask as many questions as you like, Paula.

I hope this has helped; if not, ask again.

Regards, IGGIE

My Ostomy Journey: Ryan | Hollister

For me, it was 2 bags or death. That kind of puts it all in perspective. I had a couple of months before surgery to get used to the idea. I had times of thinking, "How can I live with those bags?" and "Won't I feel like a freak?" Then I went into nature, watched hummingbirds feed or a kingfisher hunt, or simply observed the beauty of a flower... and told myself, "Living is worth any effort."

Once I had that mindset, it was easier to accept my new reality. It is so much better than the alternative. I'd prefer that none of this ever happened to me, but I am determined to enjoy the life I fought for. Having ostomies is such a small price to pay.

Personally, in your situation I'd go with a permanent ileostomy; it removes the risk of bowel cancer returning completely.

The skin irritation can easily be treated and prevented.