Anyone never have severe symptoms before opting for surgery?

Not to deter you from anything, but if I was in your case with those symptoms that you just described, I wouldnt do it. You dont even have blood, dude. I was under the impression that your case was worse that this.

Hmmm, at the time I had surgery, my UC was described as "inactive" - of course it took full dose of Remicade and 40 megs of steroids to get that way. I probably could have gone like that for awhile, but I did not want to be on the pred/Remicade (or Humira or other future meds) bandwagon for eternity. Some people could probably call me crazy for getting surgery at that point (and I only had UC for about a year).

I guess what I'm saying is...it doesn't matter how you compare to others. Some people would not even try pred before surgery. I think the most important thing is that even now, you are have life altering issues with pain. You don't want to do anything more with medication and your quality of life is not great. Surgery is not a bad idea in my opinion.

Most importantly, a surgeon has agreed to give you surgery. He would not remove your colon unless there was a medical need and you would have an improved quality of life.

Probiotic,

i was in severe pain since i was 3-4 years old, and i didn't get my ostomy until i was 45. i can't imagine not having much pain and problems.

Well good luck

Serenitee

BP 2, Borderline Personality Disorder, Anxiety/Depression, PTSD, OCD, ileostomy, pelvic/trauma dysfunction, i've had 17 surgeries over my lifetime,

NCoT- currently on 3.75 mg pred and tapering fast, after getting on Uceris (which comes in just one dose, 9mg busedenoide sp., which I think the colon feels as if it were 40 mg pred but which systemically is like 2.5 mg pred or so). Yeah, hate pred, and though my dependency was mostly low dose except for the odd flare, that's the single biggest reason- even more than the chronic pain and fatigue- that I am throwing in the towel. I was a fight to the end guy year after year, but there comes a time when one says enough is enough, otherwise the rest of my life will slip me by.

Re. Somedude- actually I dont mind his blunt humor- he is not a diplomatic poster but I enjoy his honest free expression. I suspect he won't believe I will actually do this surgery until I come and report it's a done deal and I don't blame him, it is the single scariest decision of my life but So far So good- those who were pathfinders ahead of me here sure make it easier.

Post Edited (Probiotic) : 3/22/2013 8:03:04 AM (GMT-6)

Pro, given symptoms don't seem to dictate the need however the prednisone dependency, in my opinion is a good reason to get that thing out of you. My last flare before surgery had me on the pred and it didn't help and ultimately, emergency removal was required because I was on my out. It's hindsight but I wish I had simply had the surgery rather than the last dose of pred as it affected recovery etc.... best of luck brother.

Best of luck to you. I dont think you'll regret being free of prednisone...I always referred to it as the drug that was killing me to keep me alive....

Mama2girls- that's more or less how I feel, even with surgery scheduled for soon (I cancelled surgery the other day, then a few days later rescheduled it right back again... That is how jumpy and indecisive I have been- it's not easy when one is never "severe"). In my favor for sticking with it i e going ahead with surgery through thick and thin, has been my low dose pred dependency to avoid too frequent flares, even though I have always been able to knock flares down in days with a modest pred boost. Now uceris has suddenly become my symptomatic wonder drug ever since it came out a few weeks ago- but it is nothing but a bandaid since it still has some systemic effects (just MUCH less than hier dose pred). And even with surgery scheduled, I agonize a little with Vedozinolab (sp.!) "about" to be approved by the FDA- but it could be well into 2014, who knows. It sounds like it may be the most effective and side effect-free biologic yet since it targets only the gut tissue. However, i have played the low dose pred game seemingly forever hoping for the "next thing just around the corner" and it's time in my case to end my denial... I think I will content myself with knowing that the next years stream of more carefully targetted biologics will offer a backstop for me if, down the line (or even right after my colon is sliced and diced) they find crohns.

Even the new drugs like Vedo, when they come out, wont give everyone a pred free remission (their stats are only 45% at 9 months in their own study- that sounds like it would not aork for my stubborn if mild case) and likely will still mean the occasional flare. I do think that those who manage decent maintenance with 5ASA's will, Barring high grade dysplasia, never have to lose their colons now because of the newer biologics and, in the case of flares, uceris. For those who have never done squat on maintenance meds, like me, though, they are all too little and too late. If your flares are not too frequent, maybe you can hang in a bit with rounds of uceris.

Post Edited (Probiotic) : 3/29/2013 7:39:59 AM (GMT-6)

Lol, Sue- if i was all-knowing and knew with 100% certainty that my recovery and, more importantly, outcome would be on par with yours, I think I would have wanted the surgery before I even had IBD, lol. :)

First, you are NOT throwing in the towel by opting for surgery. Please don't think of it that way. It's not giving up, and it's not losing.

As for the symptoms they don't sound awful, however being dependent on pred is very dangerous! I'm 35 and my knees are like a 80 year olds because of so much pred. It has nasty nasty side effects and is not good for long term.
When I decided on surgery my scopes didn't show my colon looking that bad, but my symptoms were bad. There was blood, but more than that I was going all the time. Unless I loaded myself up on immodium and pepto bismol I couldn't function. I had such a hard time accepting my decision, even though I wanted it, that I was actually hoping for toxic mega colon so I wouldn't have to make the choice. That's messed up, lol.
I had the same worry about the cure being found right after I had surgery. In 18 days it will be 6 years since I had surgery, there is no cure. And I had waited, all of those days would have been wasted, like all of the days during the 8 years I was sick.
To me, the severity of the symptoms isn't as important as your quality of life. And if you are stuck on pred, that's bad and while that may not effect your quality of life at the immediate moment it's effects will have a negative effect sooner than later. And if you have pain and are drained from the disease that's not a good life either.
Surgery isn't a walk in the park, as I'm sure you have read. And it will take a while to get over the pain and exhaustion from that. But the difference is, that discomfort brings you something good. It's like when you have a child, it hurts BAD but you get a baby from it! So it's pain you can deal with.
Good luck!

I have made the decision and it seems to be sticking (knock on wood- for personal reasons and to take care of various hassles including a few work things, taxes etc and the fact that uceris is a short term wonder cure, my surgery is still a month off) - gotta say though, it's a matter of acceptance, not of satisfaction or joy. It's sort of like accepting death and mortality- not something I want but something I accept- as the Stones song goes- "you can't always get what you want.... But you get what you need." The surgeons, for now, still fix what the GI's remain, for many of us, completely incompetent at. In a few decades people will look back and wonder how this field of medicine was so backwards and barbaric.

Probiotic - Your attitude to surgery sounds quite similar to mine. I elected to have it because of increasingly worse Pred dependency (by the end I was on 40mg for months and not feeling like even that worked fully). It was not something I wanted but something - after a year of indecision - I accepted. None of the Crohn's meds had worked for me. Not my GI's fault at all; he tried his best. But in the end the only treatment left was surgery. Okay, that's not strictly true. But it was the only treatment left guaranteed to work is the simplest way of putting it.

I hate having to have an ostomy, but better that than dying from Crohn's disease which, without Pred and surgical intervention, is what I believe would have happened to me. I'm grateful for good surgeons and good quality ostomy supplies.

Another surgical option is an ileorectal anastomosis - that is, joining the small bowel to the rectum. It'll only be possible if you keep your rectum, of course <_<. That is something I might have done at a later date, but, like you with the j-pouch, I am wary of it.

These decisions are so extremely hard to make, aren't they? :-/