Ulcerative Colitis/Indeterminate Colitis...facing surgery or more meds??? HELP!

@Lauren - You don't know how sick you'd be if you came off the steroids. I was diagnosed in 2000, so my history is quite a long one, but basically I got by for 11 years without any hospitalisations. My disease started off really mildly, then just got steadily worse over the years. In 2011 I became massively ill, and that saw me hospitalised for the first time: an abdominal x-ray showed I had toxic megacolon. If IV steroids hadn't worked, no doubt I would had to have surgery then. But they did, and I spent the next 18 months trying to get off steroids, relapsing, and ending up back in hospital on more steroids.

I never went a zillion times a day either: 10-12x a day was about my top limit. People say they go 30x a day, but then are only passing mucus and blood or half a teaspoon of stool when they do go. It doesn't necessarily mean they have more serious disease than somebody who 'only' goes 10x a day. There are several indicators of severe/refractory disease and steroid-dependency is one of them. A steroid-induced remission isn't even considered remission in the medical literature: if you can't get off steroids, you are not in remission. Full stop. (Or period, as the Americans say.)

Anyway, so yeah. I would try all the meds which have been listed thus far. Don't do what I did and have surgery straight after failing Remicade and Humira: I did that and really regret it now. I wish I'd tried all the above $h-t first, because having an ileostomy for life really sucks.

Post Edited (NiceCupOfTea) : 2/11/2014 7:27:50 AM (GMT-7)

NiceCupOfTea,

Thanks so much for all of your help, it makes me feel better to know I'm not the only one who "only" goes 10-12x at the worst. As of now, on 17.5 of prednisone I am going 8-10x a day, so I guess we will see how it progresses as I continue to taper...I don't plan on increasing my dose again unless its absolutely necessary. Looking back now, would you say that you would rather be trying new meds still, even if the side effects aren't known because they are new, or have done the surgery? Did you try a j-pouch? What made you end up with the permanent ileostomy? I'm sorry that you are unhappy with it :( I can't imagine being stuck with it if that is not what you wanted to end up with. That's one of my main fears of doing the surgery..I hope it gets better for you!

@Lauren - I'm not too worried about long-term side-effects. The oldest biologic, Remicade, has been out for about 15 years now and basically all major studies have failed to link it to a higher mortality rate. (By comparison, the mortality rates for UC 50-100 years ago are staggering: this was not only pre-biologics, but pre-steroids and pre-modern surgery. If you're interested, check the references in this thread.)

So yeah, that kind of puts the risks of modern drugs into context, for me at any rate. The only med I would make an exception for are steroids: they are in a league of their own when it comes to dangerous side-effects in the long term. Being unable to get off steroids was a major influence in my decision to have surgery.

I couldn't try a j-pouch. I had Crohn's in the terminal ileum, as well as the colon. The terminal ileum involvement killed my chance of ever having a j-pouch. I did ask the surgeon about it, and she just basically told me that I would waste another 4-5 years of my life if I tried it and would end up reverting back to an ileostomy anyway.

Some longstanding Crohn's patients who've never had small bowel, perianal or fistulising disease do have a j-pouch, but the number of Crohn's patients who fit those requirements is small to say the least.

Indeterminate colitis tends to be more like UC than Crohn's, which is why IC patients will be considered for a j-pouch and most Crohn's patients won't.

Hope this helps a tad. Feel free to ask anything else if you like, but for now I must go to bed..... :-/

@ByeByeUC - If you're happy to skip the big gun meds, that's fine. But it's pointless doing it if you're gonna regret not trying them afterwards, because you can't go back: you have to be absolutely sure that you want to skip them and go straight onto surgery.