Decision to make (maybe)

Hi Goldfinch-
I am a 47 yr old woman who had a mid rectal carcinoma. Hopefully you will have a better story than me, but I have been living happily with an unreversed ileostomy for 1 yr.

I was diagnosed with Stage III disease. The first thing my surgeon reminded me was that the goal was to get rid of the tumor.... then we'd see about the sphincter. My surgeon recommended, at least, a temporary ileostomy because it diverts material from the surgery site, reducing the risk of the radiated surgery site breaking down.

He told me that straight end to end reconnection of rectum results frequent bowel movements. I think this can be as often as every hour or less. This would have disrupted my life a lot, making it difficult to work, travel etc., so we talked about something called a J pouch that recreates the rectal reservoir, reducing the frequency of bowel movements. I do not know if this is possible when the tumor is a bit lower down as it sounds yours may be. My surgeon commented that some people have a problem with constipation if the pouch is made too large. He told me after a year the rectum adapts and bowel movements become less frequent even with the simpler surgery. If the strength of the sphincter muscle is decreased because of surgery or radiation, accidents can still be a problem. Because my sphincter tone was good, and he thought he had enough tissue to work with below my tumor, He planned to give me a small J pouch.

At surgery, unfortunately, my tumor was found to be Stage IV instead of Stage III. I went for additional surgery to resect the regional metastatic lesions. My surgeon was interested in reversing my ostomy, but, after living with my ileostomy for 5 mths, I told him I would rather have my ostomy than spend my life in the bathroom when I still had a high likelihood of recurrence.

An ileostomy is a bit more trouble to take care of than a colostomy because the intestinal contents are more watery, voluminous and irritating to the skin, but I find it easy to care for. It takes me about 30-45 minutes a week. I have heard that if you are very heavy or very thin they can be a bit more difficult to care for.

If your surgeon can spare your sphincter wihout at all compromising complete removal of your tumor completely , but you had continuing problems with accidents, maybe you could ask how much of a problem it would be to preform a colostomy later on?

Here is wishing you the best,

Kris

I'm with Walter....once you remove it that's it and no going back.

You say it MAY cause frequent stools and occasional accidents. Maybe not right? Nothing wrong with frequent stools. And you learn to adjust. But I am of the thinking that you save all body parts that you can. See what happens. I'd love to know how the surgeon would feel if it was his sphincter and how quickly he'd choose having a bag for the rest of his life.

My oncologist got colon cancer and his biggest request was for his surgeon to make sure he did not have to have a bag.

Just my $.02 worth. :-)

peace, emily

I see where you have gotten a lot of advice, and I hope I don't confuse you more!

I was a healthy 33 year old female when diagnosed. I had a temporary ileostomy, and was stage 4. I had my ileostomy reversed after 6 months of follow up chemo, and have been fine ever since. No frequent anything going on, and everything is functioning as intended.

So, from what you can see, you have gotten every possible scenario...the ultimate choice must be yours.

Hope I helped,

Stacy

Hello G.,Keep the sphincter if you can. Your surgeon will try to preserve it. He will only remove it if he is obliged to, depending on the position and spread of the tumour. If you had real trouble, you can always have a colostomy done later. If it ain't broke, don't fix it. Good luck and many blessings.
Vincent