need advice on possible surgery....please help.

so here my story in bullet points:

1. diagnosed 1998 with UC while in the miltary; discharged.
2. docs have categorized my UC as nearly severe thru my several colonoscopies i have had over the years
3. i do colonoscopies every two years
4. have tried various meds: asacol, pred, dipentum, rowasa... and none have appeared to have worked much
5. i have not had a full blown flare up in about four years now
6. in fact, it does not affect me on a day to day basis....
7. no feelings of a flare up or anything
8. no pain, no bleeding, no nothing for me today...ZERO!

HOWEVER

9. my last colonoscopy about 18 mos ago showed that i have pretty severe colitis on the left side of my colon
10. pictures showed that my colitis is in fact active AND my doctor told me that i had many polyps....far too many for him to remove.
11. biopsies showed no sign of any abnormalities

11. my doctor (at that time) told me i need to start preparing or at least thinking about removing the colon...but i worried because (a) he didnt sound real sure of himself when he told me and (b) i dont want to do the surgery unless i really have to
12. went to see another doc in my city (UT Southwestern in Dallas) and he told me that the other doc may have been over-reacting slightly. he suggested that we wait to see if there is any signs of dysplasia before we move to remove the colon...

so i am going to have my colonoscopy in the next few weeks now...i really dont want to have my colon removed but have a bad feeling that my colitis will still look to be very active. however, i dont have any clinical problems...i personally feel like i am remission yet the pictures show differently.

with all of that said, is there anyone that had a situation similar to this?
what is the decision point to remove the colon?
(right or wrong, i am slightly concerned about having a surgeon being 100% objective with me when there is probably lots of $ at stake...) yea i know that sounds somewhat conspiratorial but thats me.

any advice on the DECISION POINT would be greatly appreciated....thanks much everyone. cheers!

Post Edited (nickvlad99) : 6/18/2010 4:09:57 PM (GMT-6)

Hello Nick,

Are you taking any medications currently...???

imagardener2 said...
Wow, you're the first person with UC I've ever heard of that has clinically diagnosed "nearly" severe condition and NO symptoms.
I'd like to be you. My condition is "moderate" left-sided UC but my symptoms were life-changingly severe.

My question is Why would you have your colon removed? I assume you and your doctor are concerned about colon cancer because of the # of polyps but that is usually slow-growing. Reminds me of a woman with strong family history of breast cancer who has her breasts removed even though she doesn't have cancer. Because she doesn't want to chance it.

If you question your surgeon's objectivity then ask your GI. My experience is that GI's don't want to lose patients to surgeons. See what a GI has to say about it. (My cynical guess: GI will say keep trying Rx.)

It appears they seem to be concerned most with the risk of colon cancer and the number of polyps concerned my first doc; however my second doc wasnt as concerned...And yea its weird; the docs see all the UC activity going on inside but yet i have no real symptoms but have indeed had them in the past...

suebear said...
Nick,

I suggest you wander over to the www.j-pouch.org board and talk to some folks there who like you were feeling good UC-wise but were having sketchy things going on in the colon outside of UC. Most of them had surgery and they can share their stories with you and let you know how they came to the decision. You might also meet someone with a very similar situation.

Sue

Hi Sue!

Thanks Sue; ironically, i happened to run into that site about 5 mins before i saw your response....looks pretty good - i think i will give it a shot! thanks for your help. cheers!

My decision point for surgery was the fact that none of the medications put me back in remission. They helped me feel better but they never put me in remission.