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colostomy

dbyrne
Posts: 1
Joined: Mar 2003

My wife has been diagnosed with rectal cancer and about three weeks ago finished her treatment of chemo/radiation. On April 14, she is scheduled for surgery to remove the tumor (which was shrunk by the treatment). The prognosis is "excellent," for which we are most thankful. But my wife is bothered by the thought of the colostomy. Her surgical oncologist is cautious, sayiing he doesn't know if she will only need a temporary one or a permanent one (or maybe none at all). Surgery, of course, will tell. In the meantime, can anyone help my wife by relating his or her experience with a colostomy. How troublesome is it, etc.? Just knowing what she faces will help set her mind at ease. Thank you all very much.

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

First of all, be sure to give your wife total support throughout her upcoming "events." That will make a real difference on how everything plays out. I was 34 when I had my surgery last year (January, 2002). I never even HEARD of a colostomy or ileostomy (that is what I had) before any of this. I had the surgery reversed on September 13, 2002, roughly nine months after getting it. The hardest part for me was keeping the skin under the advesive from getting irritated while maintaining a good seal. As far as how people perceive it, nobody even knew I had it. I went to work every day, and my three young kids never knew either. I wore clothes that weren't tucked in, though. And you have to watch what you eat. Different foods will puff it up like a balloon, since it "captures" gas.

It was interesting at times to see the reaction of it to different foods. If she gets the procedure, she'll learn to experiment with the reaction foods have on it. There will also be a list of foods to avoid. No nuts, seeds, lettuce. Her doctor will let her know.

I too had pre-surgery chemo and radiation for a rectal tumor. During surgery it was discovered that it spread to my liver and some lymph nodes. I am fine today, and feel very blessed. An important role in recovery is attitude. If anything I said seems helpful, and you want to e-mail me, just let me know and I'll print my e-mail address. Some people prefer to be more private, and that's ok. Just realize people are here to help.

Good luck,
Stacy

dmurphy
Posts: 2
Joined: Mar 2003

i was diagnosed with colo/rectal cancer 5 years ago at age 24 and though the first time i didn't have to have a colostomy, the cancer came back a year later and then i had no choice. i have been living with it for two years now and at first i thought my life was over. i was scared and embarrassed and didn't know where to find support. these days i don't even think about it. i have found ways to adapt to this new lifestyle and still enjoy my life. the most important thing throughout this has been the support i have recieved from my beautiful wife, who by the way i met one week before i was diagnosed with cancer. what your wife may have to go through will be difficult but she'll survive it. the most important thing will be you and the love and support you give her. good luck to you friend and to your wife. a good book on living with a colostomy is called, "don't die of embarrasment" it's written by an actress who has one herself, might help. take care.

KrisS
Posts: 232
Joined: Apr 2003

I am 47. My surgeon gave me the same cautious information prior to surgery for a rectal carcinoma after radiation therapy/chemotherapy for a rectal carcinoma. My surgeon said that even if I did not need a permanent colostomy, he strongly recommended a temporary ileostomy to reduce the risk of breakdown of the surgical site and complications due to infection. (Radiation therapy is very important, but does delay healing a bit.) I have had my temporary ileostomy since 9/02. Secretions from an ileostomy can be a bit more irritating to the skin than those from a colostomy, but it has been suprisingly easy to deal with. I work full time. Although I am not an extemely athletic person, I am reasonably active and it hasn't caused any problems. It takes me less than an hour a week to deal with changing the wafer around the stoma. I thought I would need to buy new clothes but that hasn't been necessary. I never have worn really tight jeans etc. but I don't wear really baggy clothes either. I probably will buy a different bathing suit for this summer. If you eat food that results in a lot of gas the collection bag will get distended but it is quick to empty it. My surgeon has suggested reversing my ileostomy in 6-12 mths but I am not sure I want to have it done because of the minimal hassles of dealing with it and the fact my tumor was found to be more advanced than expected.

Hope all goes well for your wife.

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