My meds are working. I think i might get the surgery anyways. Thoughts?

Just consult with a surgeon and then when it does go bad setup the surgery. Years of these medications are going to tear me apart, not to mention they don't work anyways. Plus I think colitis tends to inflame other organs like the liver and whatnot. I'll be getting surgery probably within the next 6 months. I just don't care anymore, it can't be that bad since I hear everyone seems to be happy for doing it.

I've never actually lost much blood though. Having blood transfusions on top of everything else and I'd probably be even more inclined to surgery. I guess it's just up to you in the end.

You have to meet certain criteria for a surgeon to operate for UC. A few criteria that would be necessary is; refractive disease that is resistant to all medications, low quality of life, or diagnosis of dysplasia. If you didn't meet any of that criteria the only reason a surgeon would operate on a person with controlled disease/no dysplasia is if the patient had UC for over 20+ years and was doing it to head off a potential cancer diagnosis. While surgery has been the best option for me, I would have never have chosen it if medication kept me in remission.

Sue

     I agree with Suebear.  Last year I was hospitalized for ten days with Ulcerative Proctitis and high blood pressure.  After being discharged, I was still sick as a dog.  I consulted with a GI surgeon and after reviewing my case was totally against  surgery for me.  He explained that the inflammation was located only in the rectum and not in the rest of the colon.  Proctitis is easily treated but when inflamed can make one feel just miserable.  It took seven months but I was finally able to get off the prednisone.  I am not too happy about taking 6MP but hey, until they do find something better guess I have to follow the doctor's advice.  Currently, I believe I am beginning another flare and am trying to head it off at the pass with Cort enemas and Canasa suppositories.  I am a great deal older than most of you in this forum and my heart goes out to all of you.

Gotta agree with Christine.  Also, certainly trust your gastro doctor in this case and get a second opinion never hurts!

ElaineNY

I would have to agree with seconder. I believe that any good doc at the very least makes you aware of the surgery option. For my son (who had step one of the jpouch surgery three weeks ago), at least we knew that it was a possible option. . We didn't want to even hear about it at first, but at time went by and he got sicker and sicker, at least we knew he could have the surgery and be rid of this terrible illness. We consulted with many doctors and the general consensus was that his UC was running out of control and we couldn't risk him getting any sicker. Seconder is right in saying that for SOME people, UC does take away your life, you job and your general sense of peace with the world. Although my son is walking around with a ostomy bag for the next six months or so, at least he has hope that he can (already has) start living again. He missed close to a year of his life and with the guidance of some wonderful docs, he is on his way back. there are no guarantees for the future, but it's hard to imagine it getting any worse than it was before he opted for the surgery. Surgery is certainly nothing to take lightly, but for some, it simply makes sense (sooner better than later)

well its best to have surgery when you are healthy, strange as that sounds, makes the recovery MUCH easier.
If your quatlity of life is being compromised or if you are worried about long term effects of meds, you shoudl be able to find someone who will do your surgery.
I didnt try every med, in fact i only tried, immuran, asacol, 6mp and remicade in the 8 years i had and i said, no i'm tired of this, no more waiting on a med thats wrecking my body to fail again.
GIs rarely suggest surgery.
If the surgery is what you want to do, you will be able to find a surgeon who will do it. My GI didnt really want me to have surgery either he was pushing me to try diff things, in fact he talked me into remicade, when i really didnt want to do that. When i went back he suggested some other stuff, and i just looked at him and said, "either you find someone to take this out of me, or i will take it out myself" and at that minute, i was really actually serious! Not a well thought out plan of course, lol.
I totally understand why you want out of this mess for good, now that i look back i have no idea why i wanted to keep taking meds and keep my colon when it didnt want me.
But its a personal thing, and if you are having second thoughts about it, get more opinions and dont do it until you are sure.
good luck!

I'm in the same boat, but my remission isn't as complete as I'd like. Right now the meds are buying me some time to get my financial ducks in a row to shut down my business for the time it will take to recover and then build it back up again. My insurance is good, but the medications are so expensive. I am on Lialda and Canasa, which cost me $45 each in copays but costs by insurer about $1,300 a month. My Remicade infusions every six weeks cost my insurer $5,000 a pop and only last about five weeks, when I start getting symptoms and I have a rough week until the next infusion. Don't want to go sooner than every six weeks.

I am tolerating the medicines well but do not want to be on such powerful medications for the rest of my life, so yes, I am definitely contemplating the so-called "cure" and intend to have the surgery, probably in about 18 months or if I go into another full-blow flare then sooner.

If for some reason my insurance wouldn't cover it because I am in remission I'd simply stop taking my medications and no longer be in remission, but that would be unlikely -- the cost of the meds for life FAR exceed the cost of the surgery. Hmmmm, perhaps I should ask them to kick in for my expenses during recovery, it would still be cheaper for them ;-)

Meesh

Meesh,

In your case the surgery will be covered by insurance.  At a pre-consultation meeting your surgeon's office will get all of that approved for you.  There's a big difference between your UC and of the original poster's UC.  You have tried all the meds and they have failed, the poster has not. 

Sue

I think you're on the right track, surgery wise- if you fully intend to get it *someday*, then hey, go for it! And the med issue.... being on heavy meds does freak me out a bit, I don't like to think of myself being on them for decades. As far as stem cell research goes, it's just that, research.... Sure it may be the next best thing, but don't think any of us will benefit from it for at least 15 years. I was talking with my GI the other day & he said there's nothing groundbreaking right now, drug wise, they just keep approving more & more of the biologics. For Crohns currently, then usually for UC. But it's just those, the tnf blockers, for the time being. So yeah, if you needed to you could probably bounce from one tnf blocker to another for awhile, buy some time.