They think that I have either crohns or ulcerative colitis. I ha...

Have you been checked for cushings or Adison's disease? please ask to have adrenal glands checked or even thyroid OK Sandie

Well,,welcome to my world! Im 45 ..female and have had UC and crohnes for nearly 18 years!

I ve have some time of remission,,,but could never quite find the right medication.
Prednisone does help clear it up,,but yu are correct...I have the worst body pain,,too much sleep ..extremely exahusted EVERYDAY! Headaches,weight gain,,which will go away when I m not able to again,,,I ve lost and gained 35 lbs 2X in the last two years..!
I ve told my Dr, I never want to be on it again!,,He said its that or ,,,surgery!!.Im not ready for that yet !! So Im not sure what to do ,..Im at the end of my rope!!..You could try REMICADE..worked for me for about 3 years,,,but I had a very bad reactionto it so,,cant use it again,..!,,,
I could go on for hours with other symptoms I believe are form the long term steriod use!..Thanks for letting me vent !!

Diane

I am a severe Asthmatic that is once again coming off this wonderful/worse drug in the world! My highest dose this treatment was 200 mg. Then I stated to wean down by 5 mg every few days then when I go to 20 mg everyday, they started to wean me down by 1mg a week, taking it everyother day. I now am off of it for the 1st time in almost 3 years.(12 years is the longest I have ever been on it at a time) I am 44 now! But let me tell you..I have had every side effect of coming of and more. I do have all the swelling of the joints, especially the ankles and knees, The weight(100lbs) is coming off pretty easily, but I have a killer rash all over my body. It is so ichy. I have broken the skin in about 5 places. Mood swings, muscle weakness and fatigue as well as shooting pains up from my feet to my calves, they even started to go into my head. That was real scarey! The best thing is knowing all the side effects will go away or at last until I have to use this dam little white pill again! Good luck and know that your not alone. Hope you feel better sonn! MA Oh by hte way the Dr's will blame everything on coming off this drug. I said to my one Dr, that I broke a nail and he said"It's probably from coming off the Prednisone"! At least that Dr has a sence of humor in the mist of all this pain!

I have crohns which was thought to be uc for many years, and have been through all the drugs you mentioned, mesalamine enemas are no good for crohns as they relieve the lower bowel, why haven't they given you mesalasine tablets?? Any way as the lady above said welcome to my world!! Prednisone works but as you have found out has horrible side effects, and no one seems to know what to do, the associated weight gain is the worst. I too have woken up screaming from pain in my legs when on steriods. As I have been on mesalasine and asothiaprin for the last 12 years with various bouts of ill health along the way ( many in hospital) where i have had to take courses of prednisone, my Gastroenteroligist decided enough was enough at the start of his year and i am now on Remicade. It works in that my Crohns is in total remission, but I have constant aches in my knees have put on 10kg in 4 months and my legs have really swollen up. My GP put me on a diruretic this morning to get rid of the excess fluid, may be i'll be able to get back into my clothes soon. Good Luck

I looked at Cushings and it looks exactly like the symptoms of being on prednisone. That is weird. I will check with my doctor tomorrow, but all of this started with I dropped the prednisone to 30 mg so I am almost positive it is that. Small bowel follow through came back normal. YAY! so the inflamation is only in the colon documented by 2 colonoscopies. Probably UC. I just finished prednisone and mentally feel soooo much better. Leg pain is still bad...and the big D did come back with a vengance so now I'm scared of what is causing it, relapse or just irritation from all the meds?

You mentioned Knee and leg pain. I have Cronhs and I had the same thing, constant pain in my feet and legs. Do you have swelling and bruising as well in your legs/feet/knees? If so you could have Erythema Nodosum. It very painful and is often the worst in the morning. I would look into it, it's a complication/side effect of Cronhs. Prednisone took care of both.