I've been reading over the forums a lot, and I noticed we have a lot of great members here.
I just want to thank you all for being supportive of each other, and were all in this together.
I need a bit of help or advice and your input if some of you got time. I do apologize for the long post, i'm going into what has been happening since I was DX.
I've been DX with Crohn's May 2006, and as much as I hate talking about my issues that I get they are,
- diarrhea once every 3 weeks (oddly, it's like its timed and builds up over time and when I go once its done for the day 99% of the time until 3 weeks later)
- a lot of gas (i wrote out what food i ate for a week, and it seems everything is doing it, tried eating hardly still gas)
- stomach cramps on my lower right side
I was put on pentasa 500mg 3x a day in May 2006, it helped the gas a bit, pain was gone and the D still was happening but every 3-6 weeks, and sometimes I have like 2 mins to get to the washroom or too late.
Jan 2007, my GI doc added Entocort 9mg 1x a day, my issues were gone, gas was very rare, pain gone and D was gone.
I could eat anything pretty much and be fine.
June 2007 (on vacation in vegas) BAM, the D is back, pain and gas. Every 3 weeks I got D, gas here and there, and pain on and off.
It started to get worse around Sept 2007, more pain, I had to take some days off work every other week, upped Pentasa to 1000mg x 3... It rarely helped.
Now since Sept 24/07 I was taken off the Pentasa and Entocort, been off work since due to my issues running to the bathroom 4 times for 2 weeks, and the pain has been so bad.
I was put on Prednisone 40mg x 1 a day on the 24th. The worst drug ever! My knees/arm/hands were killing, I couldn't walk, can't sleep, and my heartbeat was going fast. So I went to the ER as I was in so much pain, was told to be upped to 50mg. After a few days the pain was somewhat gone, but my heart was and still is beating at 105bpm at resting state. The D has stopped, but I feel like I have to go to the bathroom every 4hrs (it's like pebbles now, I know gross! Poo talk) and gas is really bad. I'm not eating much. I'm getting really angry and irritable easily. Still can't sleep without sleepin pills (was given sleeping pills to help but told not to talk them for more than 4 days at a time, it helps). Heart is still going fast. Went to doc, was told to go down to 20mg of pred for 3 days, then 10mg 3 days, then 5mg 3 days and stop, when i'm stopped i'm seeing my GI doc (he's on vacation till next Thurs!).
I'm still on 40mg, and scared to go down and get worse. I don't know what to do. I'm freaking out. I'm on short term disability, and they're ok that i'm home from work. I'm going nuts cos i'm bored and not feeling well and the last few weeks I feel like a failure when I talk to the insurance company who's handling this seeing there's no real progress and i'm scared i'm going to get fired when I go back to work. Btw, my GI doc plan was to put me on pred for 40mg for 3 weeks, then put me on Imuran and taper me off Pred next Thurs. I still got the entocort and pentasa in my drawer. Sigh. Once again, sorry for the long post. I'm going crazy over here! Oh and I got percocet for my joint pain as it came back when I went back to 40mg (and I know not to take it long as its habit forming, T3's do nothing for me :( )