Posted 12/17/2014 1:17 AM (GMT 0)
Hello beautiful people!!! Smile!!! Sorry if I am being so long but felt like want to talk with someone.
It's my first time I write in this forum. I am 25 and come from Greece. I was diagnosed with UC in March 2012 and been on remission with just 3g Salofalk oral daily for 4 months, and cut them thinking that I was cured. So on July I got on a flare (not very severe 2-3 BMW a day with urgency, which could be controlled for some minutes). For a month I tried some enemas, increased dose of me salami, ate only boiled, baked food with no fats (potatoes, pasta, rice chicken, fish, soups, red meat,). I avoided green stuff such as vegetables, legumes, sugar etc. It was a fail for me. Not only I started losing my appetite because all those things were so not tasty, but I also lost 10kg in 20 days. Although the UC remained more or less the same.
Therefore my doc decided on August to start me on prednisone. 32mg and the next day the symptoms were gone!!!
I continued tapering it until I started seeing some blood at 8mg so I increased a bit and everything was fine!! I was seeing sometimes blood and diarrhea and pain so in March 2013 did a second colonoscopy which again showed mild flare of pancolitis. I was given 60mg of pred daily oral, and again in a day I was fine. Slowly tapered it down and started AZ which worked perfectly fine until this August 2014.
(I think many of us got a flare on these summer months, not sure if just coincidence).
In August I suffered just from Morning Urgency, blood and diarrhea but again not more than 3 BMW a day and could handle the urgency through the day. Tried Salofalk enema and cortifoam but didn't help much. On September I started 40 mg cortisone and in 2days I was fine. No blood, 1-2 BMs, rare urgency after eating lots.
I moved to Austria in October for studies. The first 2weeks were the happiest of my life. Felt great. Suddenly I had some really irritating hemmies for 10days which when finally gone the UC came back while I was still on 20mg pred. Asked a gi and suggested to increase the pred, but although I took it even to 40mg 2 weeks after, did nothing. So I was hospitalised. Got iv pred 50mg. I had 5-6BMs a day, at first loose and with blood and after two weeks of hospital they just got more formed, but still 5-6 with great urgency!!
I started on Simponi on 1 November and had 2 more injections on mid November and December. Unfortunately it is not working at all. The urgency is unbearable. Can't get out of house. When I walk I feel like my bowel gets moving and feels like want to have a movement itself. I have blood also. My Gi says we just have to be patient, although my Cup has gone to 43 2days ago, and I have the same symptoms. Told him I got small fever everyday and he said could it may come from many reasons so he didn't bother more. He refused to prescribe me cortifoam because he is "not a big fan". I think he is an ass, because although he tells me that he thinks the Simponi is not working, he prescribed me 2more for Jan and Feb and never gave me any advice as a human to human, or hope or anything to just make me feel better.
Why did the pred stopped working so suddenly? (a filling from my tooth fell of before the flare so I thought the Mercury poisoning but my gi made fun of me) What do you guys think? What should I do? I am feeling so depressed I cried like a ***** the other day, and feel so week to do anything. Please help!!
Sorry if I have tired you, and thank you if you read it all. :)