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Cant Reverse Ostomy..? So Sad

carrieh's picture
Posts: 126
Joined: May 2012

I had emergency surgery..saved my life..(yay)ostomy created which is pretty normal for colon cancer..i think?. i still have 6 months of chemo ahead..done with radiation and 5fu now..talked to surgeon..ahhh im crying while im writing this..he said that the tumor was really low down and i have a lot of internal scarring from previous surgeries..so most likely no reversal. but i just cant accept that..im so sad. i can feel that i still have a muscle down there..i dont understand why???!!! how much rectum has to be left to reconnect? does anyone know? please please please..

John23's picture
Posts: 2141
Joined: Jan 2007

Please take some time and visit the UOAA Forum?

You'll find plenty of information there, and plenty of individuals
that can be of great help to any ostomate!

Most people here have some brief experience with temporary
ostomies. What you need, is some serious input from those that
have some long-term experience....

I've had an ileo since 2006; I now have two. It's livable.

Best of health,


Lovekitties's picture
Posts: 3270
Joined: Jan 2010

It sounds like you are in the early days of dealing with all this, so tears and fears are not uncommon.

You mention previous surgeries, would you tell us what those were? You say your surgeon mentioned a lot of internal scarring...is that in abdomen from surgeries or the rectum? Either could be an issue relating to the surgeon's reluctance to do more.

As time gets closer to the completion of chemo, you will have a chance to get a second opinion to see if reversal is possible.

If it is not possible, the world does not end. Know that you can lead a good life even with a perm ostomy. Please feel free to ask any questions about dealing with the ostomy you now have and we will try to help.

Wishing you good results with your treatment.

Marie who loves kitties

p.s. I have had a perm ostomy since March 2010

son of hal
Posts: 117
Joined: Mar 2011

Carrie- Time to get a second opinion, preferably from a specialist. There are tests to detect how much control you are likely to have. It's not really the rectum that is the concern but the internal, involuntary muscles of the anal canal. I had complete rectum removed after Stage II rectal cancer with tumor 1cm from anal verge. I was told the same thing initially but surgery went in my favor and, after temp illeostomy, had things reconnected. It's been five months and things aren't "perfect" but manageable. I have complete control over large bowel movements and can hold it all day but the involunary muscles that contain the small watery stuff are not up to par. Thus the "not pefect" outcome. I agree with John though, living with ostomy is really not as bad as people think.
Best of luck.
Take care, CJ

RickMurtagh's picture
Posts: 579
Joined: Feb 2010

It can be tough having to live with an ostomy. Many of us here have permanent ileostomies and colostomies. It is not the end of the world. Every time I see my mom, I spread my arms and say "look ma, no colon," just before I give her a big hug. Stupid humor I know, but it reminds me that I am alive to greet my mom with a hug and kiss and I don't even need the colon. I try not to bring up the pooping in a bag part because that makes her squeamish and grossed out.
I had radiation, chemo, surgery, some more chemo and more surgery hoping for a successful reversal. Mine was not - many are. I forget the exact cm size my dr said i needed for a reversal, but for me ultimately it did not matter.
I say all this just to lead up to saying, just be happy with your decisions and be prepared to accept the outcome from your decisions regardless of what they are. You will be much happier.
Here is to hoping you have enough rectum to have a reversal and that is works out well.

peace and best wishes

carrieh's picture
Posts: 126
Joined: May 2012

thanks you guys. I was having one of those crazy sad nights..couldnt sleep..just cried and felt pretty sorry for myself. I dont hate it as much as I used to; I just cant help wishing I could get it reversed. The surgeries I've had this year include a laparascopic procedure to get rid of infection from colon tearing open, an abdominal incision to perform hystorectomy..couldn't be done..open and shut..then abdominal incision for emergency colon resection and total hystorectomy when colon ripped/ tumor had grown into uterus...first two surgeries at a local small hospital..they had no idea I had cancer..sort of a mess...ostomy done by specialist..hes awesome..but anyway..thank you for giving me hope and good advice,

Posts: 1961
Joined: Aug 2003

I hope that you can have a reversal but if you cannot I want to say: it ain't that bad . Takes some adjustment - both psychologically and physically. but one does adjust. I've had a permanent ostomy for almost 10 years. I swim, hike,wear almost anything I want. - and (excuse me) physical intimacy is just fine. It can become just a minor part of one's life.

Best wishes to you


Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

Sorry to hear that but if you have no choice a perm ostomy is not bad at all once you adjust to it & figure out which brand appliance is best for you. Plus the fact you can lead a normal lifestyle ect. Took me a couple months but adjusted to it ok.

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