Did I experience... the hard time? Yes. We had a very hard time financially because I could not work for 2 years and was turned down for SSDI (just had a court hearing on that two weeks ago and am waiting to hear). We were maybe slightly better prepared than you because I was dx'd with IBD when I was 13 so I always knew disability could be an issue, but nothing makes it not-rough. Our credit is now dreadful and we were a terrible burden on my parents (DH is a grad student and doesn't make much money yet).

On balance, although it was expensive, Remi was well worth it to me financially, just because I am able to work again.

I see what you mean now about the short life of the drug. Well, I figured, it might have scary long-term effects that we don't know about, but we DO know that prednisone will pretty much kill you if you're on it long enough (it took a few years off my grandfather's life according to the docs).

They do use a very small needle for Remicade. So if you can take any IV at all, you should be able to manage it; otherwise you may need a central line, as will I if I ever need the stuff again. My understanding is that, with active disease, the benefits outweight the risks.

Are you having blood tests to measure liver functions, WBC, and whether the 6mp is at therapeutic levels? Some people need to take more of it than their weight would indicate. Also make sure your doctor recommends you for a flu shot.

I have also met a few people with CD who went on liquid diets (the prescription kind) or even TPN for a while as "gut rest" which can also help induce remission. You could ask about that as an option if you think you would prefer it. I tried the liquid diet thing when I had active dz and it did no good, but it has helped some people.