Hey Everyone,

My name is Phil, and this is my first post.

Last week i received some potentially devastating news, and despite all the reading, all the phone conversations, and all the moral support from friends and family, i realized that i need to talk with people who are directly dealing w/ CRC.

Here's the breif history - I am 35 and in great health. However a couple weeks ago i started having some problems w/ a nasty cough, so i go to see our doctor. Well after a thourough exam, she orders a chest x-ray, and blood test. (she wanted to see if my cough was valley fever, pneumonia, bronchitis etc etc) Well the x-ray came back negative for all that, as did the blood test. However the blood test revealed that i was anemic.

After a more thourough [rubber glove] exam, she tells me that i need to have a colonoscopy asap.

So i had one done.

It revealed literally dozens of polyps in my colon, (it looked like dozens of mosqueto bites) 2 of which concerned the doctor, they were noticably larger - so he took samples of them for biopeies. (still awaiting the results) They were located at the bend in the colon from the transverse and decending sections. As things turn out, i find out from my mom that F.A.P. runs in our family.

The doc said that based on the volume of polyps, that my entire colon will have to be removed, and that i'll need a temporary bag.

So now that i'm sufficiently scared, i'm finding that a little communication w/ any fellow sufferers of this condition would be an immens help to me right now.

Any thoughs or comments are much appreciated.

Thanks, Phil

I didn't have FAP but I do have a permanent colostomy.

I was 10 years older than you when I got it.

Another poster here is about your age, both of us had cancer.

A colostomy takes some getting used to and the surgery does drain you and take at least 8 weeks to recover(only about one in hospital). Take it easy on yourself in recovery but try to walk about as much as possible. A 5 minute walk every day will do wonders to bring back your strength.

Learning to deal with the pouch is simply a case of relearning the potty training you got when you were 2 years old. However at least this time around you have better motor skills and reasoning. There very well may be accidents but as you become more and more comfortable with things these will diminish.

I swim, shower, work at my sometimes physically demanding job and although there was slight nerve damage, I am continent and potent.

My tumor was at the lower end of the rectum. If they are working on you higher up, at the bend from transverse to desending colon then you have less chance of nerve damage in that respect.

Make sure your surgeon has done this many times and that he his patients have had good results.

If you are a hairy guy you might consider permanent hair removal at the site of the stoma. I wish I had. Yours may be temporary but you should try to view it as if it were permanent just in case.

Keep us informed, and know that we are here to help all we can.

jaydees...
this line:............ Yours may be temporary but you should try to view it as if it were permanent just in case.

I was told my ileostomy is temporary and I BELIEVE it.. why wouldnt I? Its a little light for some of us to look forward to. Please dont dampen it.

Maz

Phil, there is a group you can probably google, called the colon club. It is primarily colon and rectal cancer patients in their 20's and 30's. They even are selling a pin-up calendar, called a colondar-real survivors are pictured, scars and all.

well the biopsy results have come in - the doc said that of the "several" biopsies he took, one came back showing that it had undergone a "cancerous change".

when i asked him how severe that was, he could not tell me. obviously he can't tell me what stage things are at either.

i asked him if he thought i'd need chemo prior to surgery and he said that he's not sure "if i'll even need chemo".

so my question is this - what in the world is a "cancerous change"? where does that rank in relation to "pre-cancerous", and true cancer"?

jaydees...
this line:............ Yours may be temporary but you should try to view it as if it were permanent just in case.

I was told my ileostomy is temporary and I BELIEVE it.. why wouldnt I? Its a little light for some of us to look forward to. Please dont dampen it.

Maz


Its the way I am. I knew going in that mine would be permanent but my mother had temp and I had time to think about it back then(which was before my diagnoses. I had decided that if I was in the same position I would go about it as if it were permanent. It is a case of going about things full on, not that that is how I do everything, far from it but in this case I had decided to do it that way. Fate removed that for me by making it a done deal that it would be permanent anyway.
I apologize if it sounds like I was trying to kill the hope of those with temps. It was certainly not my intention. I probably should not try to impress my own personal choices on others, sorry.