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colostomy...yes or no

haarberg
Posts: 17
Joined: Nov 2007

On Oct.24 I had Lower Anterior Resection surgery. I had done little research and had no background on the subject matter.I was told by my surgeon that I may have enough of my rectum left to avoid having a colostomy. Hearing this my mind was made up that if this was possible that this would be the obvious choice.Now however I'm not so sure.I have undergone 6 weeks of chemotherapy and after my next treatment will begin a 5 week regiment of radiation and chemo.The problem I have is with my BM's.They are an ongoing process lasting several hrs.and quite often I'm not aware of what is happening until it is too late.I have been told that these problems can be made worse with radiation treatments leading me to think that perhaps I would have more control and thus more freedom with a colostomy. I would appreciate anyones thought on this.

Faith4Cure
Posts: 405
Joined: Mar 2007

It is such a hard decision to make, but only you can make this choice.

My husband's treatment was a little different, in that he had radiation and chemo first, then had surgery to remove the tumor and have a temporary ileostomy. While still having his ileostomy in place, he completed 4 more months of chemo. After all of the treatments were complete, he had the ileostomy reversed. It has been 6 months since the reversal and he is still recovering. It takes a long time to retrain the bowel and I'm sure that chemo and radiation being done at the same time that the healing needs to take place is tough! You're situation is a little different, but I can tell you that it takes a while for your BMs to become more "normal" again. It does take time, but it does get better. I know it is a lot for you to tolerate all at once, so hang in there! Good Luck with your choice and may the new year be one filled with healing.

Faith

KierstenRx's picture
KierstenRx
Posts: 249
Joined: Nov 2006

harrberg,

The decision is all up to you, but I will share my experience. I was told after completing chemo and radiation that the I would probably end up with a permanent colostomy, but my surgeon would try to make a reversal possible. I went in to surgery prepared for a permanent colostomy and I ended up with one. My surgeon said in order to get clear margins that I would end up "pooping all over myself" if he was to reattach. I have never looked back. My colostomy and I have an understanding and coexist quite well. There was definitely a period of adjustment and some major tears and foul words at times. However my quality of life is a million times better and I am NED most importantly. I used to have to go to the bathroom 20 times a day. The radiation made it extremly painful to go to the bathroom and still hurt when I had my surgery 8 weeks after completing. It will be a year in February and I still do everything I did before.

I think most people on here would definitely have a reversal and deal with the retraining. I wasn't given that option. However, I'm content with the ways things turned out and it is nice not rushing to a bathroom and trying to avoid an accident on a daily basis.

Good luck with you decision.

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

I initially had radiation and chemo for my rectal cancer followed by a local excision. The cancer recurred 8 months later and I had further surgery with a permanent colostomy. Would I prefer to not have the colostomy- yes, if everything worked well. However, the colostomy is not that big a deal and it is nice going places and not having to seek out the bathroom right away. It is a tough decision. It is also possible that you could have the reattachment and if it doesn't work out well for you then later have the permanent colostomy. That would, however, mean you would have an extra surgery. Deciding that depends upon your confidence in the surgeon and the ability of your body to tolerate and recover from the surgery. Whatever you decide will be the correct decision.

Dick

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

I had chemo, radiation and then surgery with a temporary ileostomy. I had all of my rectal tissue removed. Eight weeks later I had an ileostomy reversal. I so wanted to be done with the ostomy. I them received only 4 out of 12 chemo treatments and ended up in the hospital with such bad diarrhea that I was on TPN -- IV nutrition and had to stop chemo. I continued with diarrhea and bowel dysfunction and 18 mos. later made the hardest decision of my life and had a colostomy done. I havent looked back. I have my life back. Yes it was an adjustment, but it is easier to manage than the ileostomy. I went on a cruise when I was 7 weeks postop after the colostomy and I even went snorkeling.

I have radiation collitis from the radiation. I have a great surgeon, my body just couldnt adjust to the new rectum. I had such diarrhea, occasional incontinence and frequency. I was going 20 - 40 times a day and my bottom was always in pain.

You are still early in your healing. Good luck with whatever you decide.

Maureen

haarberg
Posts: 17
Joined: Nov 2007

Many thanks for your replies. This site has been very informative and helpful for me.Best Wishes for a healthy New Year and may all your prayers be answered and dreams come true.Thx again,haar

sisterpoetic's picture
sisterpoetic
Posts: 2
Joined: Jan 2008

my prayers are with you i was diagnosed with cancer on september 20,2007 and that surgery was needed right away they where going to do a reconnection but the tumor was so huge the colostomy saved my life i woke up from surgery with it believe me it was devastating but a few months of healing down the road have come to embrace that things could be worse and this cannot be reversed so it is here to stay you will
heal in time just know that what ever the decision
you will come to the place of acceptance
peace to your journey

rmap59
Posts: 266
Joined: Jun 2007

Hi,
Boy, its a hard one (no pun intended). I had one half of my rectum removed due to stage 3 rectal cancer. Going into surgery the nurses marked me for a colostomy bag but when I woke up I did not have one. I was very happy. This was 8 months ago and I still have many problems. Sometimes diarreah, sometimes constipation, going 20 times a day, having accidents in public, pain in bowels sooooo I dont know from hearing some of this people talk the bag doesnt sound all that bad. I have hope that my problems will resolve themselves but it sure is hard to deal with sometimes, I told my husband that **** rules my life, sorry for the strong word. Anyway good luck, pray about it and your answer will be the right one.

Robin

dn220's picture
dn220
Posts: 79
Joined: Sep 2007

I too am facing a permanent colostomy but my doctor says I have no choice. I am currently doing my radiation/chemo, just 18 more radiation treatments to go, I'm on xeloda but they put me on that because I had no insurance at the time and my insurance came thru Friday so now they are supposed to let me know Monday whether or not chemo will be changed. I am supposed to have my resection done 4 weeks after rad is completed then 6 weeks more chemo after that. I have big problems with incontinence now and will not go out in public for very long for fear of an accident. I am not happy about the permanent colostomy but after reading what some of you have written it does make me feel a little better about it.
Deb

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