Maybe this colonoscopy will determine crohn's or UC and what kind of surgery I might have

Well, I suppose this reply will be as resoundly ignored as all my others (not a dig at you personally in any way; it's just something I have learnt to expect). But I was in a similar boat to you a year ago: tried all the meds you listed, was steroid-dependent, and had been hospitalised a few times in the previous 12 months or so. But I did have known Crohn's, so a j-pouch was ruled out from the off.

I would go for an IRA over a j-pouch, but only if you have zero rectal inflammation. (Which, if you did, would strongly suggest Crohn's colitis, since UC always affects the rectum.) With an IRA you get to keep your own rectum and don't lose 2 feet of your small bowel in the construction of the j-pouch. Functional outcomes (eg how many times a day you go) appear to be slightly better with the IRA, too.

Having a j-pouch with Crohn's colitis is possible if you've had it for a few years and have never had small bowel disease, or perianal/fistulising disease in that time. Maybe there are surgeons who will give you one if you've only been diagnosed for a year or two: I don't know. It's certainly taking a massive chance if the colonoscopy reveals Crohn's.

I don't know... I'm probably the wrong person to give an opinion, because I have absolutely no hope or positivity whatsoever: everything seems ****ed, quite frankly. If it turns out you do have Crohn's, then you have to decide whether you can handle having a permanent ostomy or not, because even if you start out with a J-pouch or IRA, there is no guarantee you will have it in 10 years' time: you might do, but Crohn's, unlike UC, tends to come back.

If it was me, I'd try Vedolizumab, Cyclosporine.... Heck, I'd try a stem cell transplant or adacolumn apharesis. Anything to buy me more time! But that's just me: you need to decide what's best for you. Don't let the overly positive or overly negative people sway you too much: the truth probably lies somewhere halfway in between us extremes. Whatever you choose: I hope it works out for the best.

Yes, you really have been through the mill this past year... :-/

Given what you've said, though, it seems like you can't really afford to delay surgery for that much longer. If you were a younger man, and had the stubborness of Somedude, you could persue every treatment in the land - but most of us don't have that type of commitment and energy. I ran out of steam, and it sounds like you have too.

For whatever it's worth, surgery is likely to make you far better physically. It's just making the decision to have it does absolutely suck: I think the stress gave me mild PTSD... :-/

Anyway, again, best of luck. Apologies if I sound a tad out of it: that's because I am.

Anytime :p

I had the Prometheus test a while back at my original GI and he said I had ulcerative colitis. However my current GI says my patchy claw like ulcerations make it Crohns or Crohns colitis.

Thanks Lauren. Keep visiting here. Its a great group of people and a real life line.

Good advise

IBDisannoying said...
Well the same thing just happened to me.. My old GI said it was colitis, but the new one claims it's more like Crohns. With what I have heard, rectally spared Crohns points more toward an IRA.. If you have UC, you are probably better off with the J-pouch or illeostomy bag... and if I for sure had Crohn's or Crohn's colitis, i would try my best to keep as much healthy intestine as possible, since Crohn's can come back anywhere. If I had UC, I would go more towards getting rid of the entire large intestine (even the healthy part) so it can't ever come back.


You should try Vedolizumab before getting any surgery (Have heard good things about it). If that doesn't work, your best option would be to get a few more tests and second opinions to make sure you have Crohns so that you don't go with the wrong surgery.. My opinion is that if a medication could buy you more time, than don't do surgery until every last option is exhausted..surgery is a last resort, and with Crohns, you want to hold onto as much intestine as you can. I wish you good luck.

I am glad to hear that things didn't look too bad, I hope your symptoms are under control as well.