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Decision to make (maybe)

goldfinch's picture
goldfinch
Posts: 737
Joined: Oct 2003

I was diagnosed with rectal CA on 7/3/2003. I am a 47 year female who has always prided herself on her good health:-). I've already gone through chemo and radiation in an attempt to shrink the tumor. Tumor is very close to sphincter muscle. Surgeon won't know until i'm in surgery whether he can do sphincter sparing surgery. He told me, in the meantime, to decide how important it is that we spare the sphincter. He said that people who have the sphincter sparing surgery may have problems with frequent stools and occasional accidents. I may prefer the option of permanent colostomy. I'm wondering if any of you who have had either of these surgeries have any thoughts.

KrisS
Posts: 232
Joined: Apr 2003

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

WLawrence
Posts: 6
Joined: Mar 2003

I am a male 70 yrs of age with stage4 rectal cancer. At this time I am NED. I have a colostomy. My anus was removed when I had surgery. If I were given the choice you have I would select to to keep all body parts. The surgeon may find during surgery that he can't save any thing do to location of the tumour. If so he would have to remove them and you will have a colostomy. If not He could leave them in and perhaps be reconnected. Once the rectal parts are removed you have no other choice. If they are left in they can always be removed. I also would have a disscusion with the surgeon and get the pros and cons.Be sure you ask about intimate items. Feel free to mail me. Walter

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

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

Chrisswife
Posts: 50
Joined: May 2003

The way my husbands surgeon explained it to us was that certain old school surgeons will do the colostomy almost as a matter of course, and some will agressively attempt to save the sphincter in a misguided attempt to save their patients from having to "have a bag". These patients often end up with a poor life quality from anal leaks, accidents, etc. His approach was right down the middle, he would attempt to spare the sphincter if he could do so and still get a good margin around the tumor and if he felt confident that it would be functional enough so that my husband could still enjoy a good quality of life without pooping in his pants. Sorry I'm blunt, but that IS what we're talking about here.

In the end - no pun intended;) - he had a permanent colostomy this past August. He's 33 years old.

And how did my young, active husband react to this news? As he was wheeled out of recovery surrounded by friends and family he said "Next time someone tells me that 'opinions are like a**holes, everbody's got one', I'll drop trou and prove 'em wrong!"

Seriously though - it is NOT that terrible, he is adjusting just fine. I'm of the mind that his rear end has been no friend to him for some time and I would hate to see him struggle with continence issues, wear diapers, etc. only to have to have another surgery down the road.

If you haven't already, I would encourage you to post your message on the UOA board: http://www.uoa.org/discussion/genboard0309/

You will get responses from a wide variety of people, some have cancer, some don't. They are a great resource for information.

Good luck and god bless you. Let us know how it goes.

StacyGleaso's picture
StacyGleaso
Posts: 1246
Joined: Mar 2003

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

kjbascom02
Posts: 3
Joined: Jun 2003

you may find the United Ostomy Association site helpful. They eased my fears about having one immensely. Fortunately, my chemo and radiation obliterated my tumor and I didn't end up having one. Good luck.

http://www.uoa.org/

vcavanagh
Posts: 86
Joined: Dec 2002

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

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