I cannot deal with pred side effects

Try a lower dose, like 25mg and see how you tolerate that.

The side effects are dose dependent - they should lessen in proportion to the dose. Find a dose you can tolerate. Sometimes you just have to put up with them to get the flare under control too.

oh dear! i know the side effects of pred all too well!!! i was going mad on it, literally!!!
Where do you live? You can get a steroid called Clipper which is supposed to release in the colon and so it has less side effects than pred. I got mad on pred but on clipper i only got mildly anxious towards the end.

Also, what diets have you tried?

I strongly advise paleo or primal diet by mark sisson.
Have you tried alternative medicine? i failed rowasa and canasa and steroid enemas and i couldn't tolerate pred. The only thing left for me was 6mp or surgery (biologics are insanely expensive here in Australia) but with lots of prayer and faith, i tried the clipper + paleo+ chinese herbs called Isatis cooling and that really helped.
See my sig for complete list of what i took.
Please keep us updated...

Im sorry that you had to stop remi when it was working for you.

Im not sure how you can get it in US, except if you order from canadadrugs.com but it's risky coz you never know whether it's a proper drug.

What about alternative meds? have you tried new zealand colostrum?

if only my GI would prescribe it

No havent tried colostrum

Andrina, you shouldn't ever just quit taking prednisone, especially when you are at the higher doses. All sorts of bad things can happen, including sudden death. I remember you talking about surgery before. Maybe it's time to put this disease in the past. Almost everyone who has done surgery regrets waiting as long as they did.

gary, it's ok to stop prednisone at any time before two weeks. that's at least what a few pharmacists have told me. i was having terrible problems after 3 days on it once so i just stopped taking it at 40 mg. i felt so much better when it was outta my system.

You should check into the insurance j-pouch thing to make absolutely sure. You are in the US right now, aren't you? Maybe that's true in national health systems in other countries. There are a lot of people walking around with J-pouches. Surely they didn't get stuck paying for them outside of insurance. You have been miserable with this for so long maybe your best option is to put it behind you. I don't know what your prednisone history is but if you can get better on 20mgs maybe you could give that a try. I am actually considering that option myself. I am doing so well but get very disgusted that I can't just kick this in the butt for good. I'm hoping a 20mgs dose of pred could tip me over the edge into remission and then hope that the things that I am already doing can keep me there.

Never tried Valerian for agressiveness but I tried it to try and sleep but it just ended up loosening my bowels and inducing BMs heh.

Try Vitamin B100 complex. I beleive it helped me reduce stress making me less aggressive, plus gives you some energy.