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Wanted some personal experiences on colostomy surgery

swood9008
Posts: 116
Joined: Jan 2015

My mom was diagnosed with stage 2  anal cancer in 1/15 treated with chemo and radiation she was in remission 6/15 until last week when biopsy showed a walnut size tumor. Cat scan shows no matastisis thank goodness, but dr says she needs full colostomy. She is 62 years old, diabetic, doesnt have the best stamina. She is a nurse in Boston so that tires her out she has cut down to per diem, she is scheduled for surgery in 3/4 weeks, dr said 40% survival rate? Just looking for anyone with similar experience with positive outcome. just had my first baby 2 weeks ago and have so much to learn from my mom and need her to be around for a long time! 

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

Hello there! I don't have a colostomy, but I had a temp ileostomy for fifteen months after my first surgery. It wasn't very much fun, that's for sure, but ileostomies are a lot different and more difficult than a colostomy. I'm wondering why the doctor feels she needs an ostomy if she's cancer-free? Is the new tumor they found on the anus? Is it growing a lot?

Best wishes to you and your family!

Krista

swood9008
Posts: 116
Joined: Jan 2015

She has a new tumor at the same sight as the last time, luckily pet scan shows no spread but tumor was positive for squamous cell 

Tunadog's picture
Tunadog
Posts: 235
Joined: Mar 2017

This sounds like a normal sequence to me. What bothers me is the 30-40% survival rate.

My colostomy was put in during my Cancer surgery to remove a large tumor near my anus. When they got in there they found more Cancer than expected and went for the Colostomy. (6 hours, no transfusion). I can't imagine anyone dying from these procedures.

Hopefully your mothers surgery will go just fine and she will get used to living with the bag.

Peace

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I don't think the survival rate is that low Tunadog. I don't have time to pull up the numbers but I'm sure someone else will have them. Colon cancer is one of the more treatable cancers with a pretty good survival rate. If you are looking up facts on Google remember that much of what you'll read is old news or even untrue. Most of it is doom and gloom. Please be positive, it will go a long way to getting you healthy again or at least will help your mental health during this difficult time.

Jan

Tunadog's picture
Tunadog
Posts: 235
Joined: Mar 2017

I was surprised with the 40% survival estimate.

Best Luck!

Kazenmax's picture
Kazenmax
Posts: 453
Joined: Feb 2016

Hi,

I just wanted to tell you about my experience. I had a tumor very low and near the sphincter. I attempted radiation and chemo and only got halfway through as I had developed a fissure (radiated a hole between rectum and vagina). Anyway, I had to wait a bit to heal after the radiation before surgery. I knew from the beginning that there was no salvaging my sphincter and I would have to have a colostomy bag. Luckily most of my colon remains, so my digestive system works as before.

Anyway, the surgery was very rough. Surgeons needed to take skin from my stomach to reconstruct vaginal hole. I had my rectum, anus, sphincter and some colon removed. Some of the skin was used for stitching over anal area. (Sorry for the graphic detail). I was in and out of the hospital for 3 weeks because my system would not recover and start functioning again.

I will tell you, it was not an easy surgery. I was in the operating room for over 8 hours. That was in May 2016. It took a long time to heal afterwards. But I can say that today I feel so much better and I can't believe I made it through it all. I still have good and bad days. Sometimes the colostomy is not that bad and other times I hate it. But I'm here and I intend on staying a while.

My advice is to walk as much as possible. Try to stay positive but realize that your life is changing. You will be depressed but it is survivable. I hope your mother does well.

Good Luck

k

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