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Colostomy Fear

Posts: 32
Joined: Dec 2006

Dear Friends:
I just got back from a check-up and the PET scan showed that my rectum lit up. (The rectum was the site of my primary tumor, which we thought resolved completely using chemo only.) I go back to MDAnderson in late January for another CAT scan & flex sigmoidoscopy. And my CEA is less than 1.
Now I'm frantic thinking that I've reoccured in the rectum and will need a colostomy. My orginal primary was low in my rectum & would have required a colostomy until the chemo destroyed it.
Is there anyone out there who has colostomy & lives a normal life? I'm only 43 and was hoping to live a long life. Is there anyway to get around wearing a "pouch"? Is daily irrigation a possibility? Any and all help/advice would be greatly appreciated. Thanks!

spongebob's picture
Posts: 2598
Joined: Apr 2003

A -

I know LOTS of young people who have an ostomy. I honestly wouldn't even have known they have on had we not shared the CRC bond.

Tell you what, if you're worried about it, check out the 2006 Colondar, Miss May (? - can't recall for certain what month she is) has one and you can see it in her photo. Is she any less pretty? NO WAY! Does she live a normal life? Yep, just a couple of extra daily chores she has to do (but then she isn't running to the bathroom 4-6 times a day like I am, so she has extra time!) And, hey, long car trip? NO PROBLEM! Or like Scouty in Vegas - on a hot streak in the Casino? Don't want to have to leave the table? NO PROBLEM!

No doubt you'll hear from a lot of folks, and I hopeyou don't think I am treating your concerns lightly - I understand your fears. I thought a couple of years ago I was having a recurrance and I would have to have an ostomy - it would have meant the end of my career. I understand you're scared, but what I have seen is that life with an ostomy ain't so bad - if it is necessary.

Keeping you in my prayers, A!

Monicaemilia's picture
Posts: 455
Joined: Nov 2006

Hi - I have an iliestomy, and Spongebob is absolutely correct, I don't consider it a problem (especially when I don't feel like getting up at 3:00 a.m. to go to the bathroom). It just takes getting used to. But don't panic yet, it may not be an issue. Monica

Posts: 6
Joined: Oct 2005

Lots of folks live normal lives with ostomys. I had an ileostomy for 9 months with few problems. Below are two forums for Ostomates. Both are very good resources for information on ostomys.
UOAA -- http://www.uoaa.org/forum/index.php
Shaz -- http://st80.startlogic.com/~ostomate/cgi-bin/yabb2/YaBB.pl


chynabear's picture
Posts: 483
Joined: Jul 2005

I don't have an ostomy, but I had the same exact fears you have when I went in for surgery.

My fear of cancer is far greater than my fear of an ostomy. Bring on the ostomy if need be.

I remember many posts on this board that say that once you find the right fit for you all is good. Plus, make sure you find a good ostomy nurse in the beginning.

Also, I have been a nurse-aide and have dealt with others having an ostomy. Not that big of a deal and nobody can even tell.

I hope you don't have to face this road. My prayers are with you.

Posts: 7
Joined: Jul 2006

My step Mother and Mother in-law both had a colostomy and had it reversed after a few months. I had a nurse that had one and lived and worked with it for years and I only knew because she told me. Don't make yourself sick with fear and worry.
You will have so many thinking of you and keeping you in their prayers.

Posts: 58
Joined: Dec 2006

I have an iliestomy and yes it was also my greatest fear, BUT it is not as bad as I thought it would be. As Mark said, try the ostomy boards, I love them and they help a lot!

I had rectal cancer and a resection, and I will be having a reversal, so could you!

God Bless,

Posts: 544
Joined: Jun 2004

I have a permanent colostomy. I have had it since June 2004. I had just turned 47. I was afraid when I went into surgery because I didn't know what the outcome would be. Other than some problems finding the correct equipment it has been ok. I do everything that I did before and don't let it stop me from living my life.
My attitude is that living with a colostomy is better than not living. It is also better than being stuck in the bathroom all the time which probably would have happened to me.
Hopefully it will turn out that there is no reoccurence.
Take care,

Posts: 544
Joined: Jun 2004

Forgot to add to my last post that if you have any questions feel free to e-mail me through this site.

Posts: 1961
Joined: Aug 2003

I hope that you don't end up needing a permanent colostomy. But, if you do, I can honestly tell you it isn't that bad. Yes, it is a psychological adjustment (a big one). And, it can take a little while to get the best possible system and supplies sorted out for you. I have had a permanent colostomy since my initial surgery for rectal cancer (following chemoradiation), almost 4 years ago. I was 44. I can do everything --- swimming, skiing, jacuzzi, running. I can wear almost everything I could before (no more bikinis but that was not really an option for me anymore, given my age and um...). You asked about irrigation. I had been told that people who had done radiation (me) were unlikely to be able to irrigate successfully. Well, I am. I irrigate every day (some people can do so every 2-4 days). The appliance I wear is not much bigger than a bandaid. I sometimes use a more traditional pouch when I am travelling or when it is not convenient to irrigate. I am happy to answer any other questions you have -- you can send me an email via this site. I wish you all the best.

Posts: 34
Joined: Oct 2006

I can understand your fears! I thought I'd share that I just bought a puppy from a woman who's husband beat the beast 6 years ago. He was 60 when diagnosed -- and his comment about having a colostomy was that he learned to jump a horse with one! He didn't let it get to him, and it has been reversed, and life seems good for him! As many others have said -- deep breaths and one day at a time!

vinny3's picture
Posts: 933
Joined: Jun 2006

I know your fear well. Before I was diagnosed I would have done anything to avoid a colostomy. I had chemo/radiation first and then just a local excision. The rectal cancer came back in 8 months and I now have a colostomy. It is the least of my concerns. If I had known how easy it was to care for, and have, I would have pushed for it the first time. Of course, I am 64 so my outlook about it may be different but it is not bad. Plus I no longer have the urgency I had before so don't have to know where every bathroom is.
Remember, colon and rectal cancer has most successfully been treated surgically. Send me an email on this site if you have any specific questions about a colostomy.


nanuk's picture
Posts: 1362
Joined: Dec 2003

I concur with Dick and Tara; I've had a colostomy for over 5 yrs, and it is a breeze..I'm not sure why Bob said it would be the end of his career, but there may be some military rule(?)
Mine has been nearly problem-free, and much easier to deal with than expected.
I think you may be jumping to an unwarrented conclusion at this point; a mere inflammation can light up on a PET. Wait and see. Please e-mail me on this site if questions.. Bud

spongebob's picture
Posts: 2598
Joined: Apr 2003

Bud -

That's it exactly. Can't goto sea with an ostomy. Although you may rest assured I would welcome the opportunity to get the archaic and draconian regs re-examined. Cancer todayisn't the cancer of 20 or even 10 years ago.

Moesimo's picture
Posts: 1080
Joined: Aug 2003

I had a temporary ileostomy and after my reversal I spent way too muych time in the bathroom. I then had surgery for a colostomy 1/05. Life is better now. I have more control now. While I wouldn't have chosen any of this, my life with an ostomy is not so bad. I work full time as a nurse. Email me if you have any specific questions.


Posts: 708
Joined: May 2004

Try not to worry too much - I hope late Jan scan will give good news.

I got a permanent colostomy with my surgery back in 2002, when I was 32 years old. As Tara said, it is a BIG adjustment; but once you find the best products for you it isn't soo bad. I had pelvic radiation and was able to successfully irrigate, when not on chemo.

However, try not to go crazy worrying about that right now. Just try to live and be happy and wait for the next scans.. ugh.

We are here for you. jana

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