- Joined
- Aug 16, 2010
- Messages
- 83
Hi everyone,
My crohn's disease has become like the uncle that tells really bad jokes at the dinner table and comes to stay for the weekend and 10 years later he's still here. His name is uncle D
I had to stop Remicade due to all of the infections and flu like symptoms I had for 18 months. With the change of Remicade came a change of GI doctors.
My new GI doctor is a dream come true. She listens and is attentive and proactive. She believed I was allergic to the mouse protein in Remicade so switched me to Humira. I have had my first and second loading dose and take my first regular dose tomorrow.
After four days on the Humira all of my flu like symptoms were gone and for the first time in 18 months I could move freely and felt so much better. I was laying in bed a few days after my second loading dose and felt the familiar girgle in the spot under my left rib cage that is a subtle signal my body gives off that says get ready Ann Uncle D is coming for a nice long visit.
Sure enough within 24 hours D was here with a vengeance. My first line of defense of course if denial. I talked myself into it being cause by something I ate or a stomach virus. Even though I knew it was Uncle D. I never have that gurgle any other time. So After a couple days of 7-12 D's it calmed downs. I got a few days reprieve and it was back again on Thursday. So I broke down and called my GI.
What was weird was it was the actual GI that called me back. I never once talked to my old GI on the phone, I always had to go through his nurse. So she said she thinks it is probably just the switch of medication and she wanted to do a short taper of 3-4 weeks of PREDNISONE. I have been off prednisone for about 16 months and finally have my face back, I have a neck that is recognizable as an actual neck my camel hump is gone I have taken 40 pounds of the 75 I gained from being on Prednisone for two years before.
I never talk about my disease because I'm tired of Uncle D and really just want him to move out. But for the first time in my life I am telling the world well at least everyone on this site that I am so bummed, disappointed and down right disillusioned.
I started 40 mg. of Prednisone yesterday. Within hours I was feeling like I was coming out of my skin. The old familiar feeling of anxiety, sweating and anger all flooded back. I can feel my heart beating in my chest and just generally feel pissed off.
I am now in the "what if" stage today going through all the if scenarios that I hate doing but can't stop the racing thoughts. The last bad flare I had it took 60 to 80 mg. to get it calmed down.
The worst part. And I know I am ranting but I can't help it. I am a fraud investigator and I travel a lot by car all over California. When I am in a flare like this my life sucks trying to make a contingency plan for ever aspect of my life due to Uncle D. I go into strangers homes that are not the most savory characters in the world and I DON'T want to use their bathroom. So just imagine what I try to figure out. It's mind boggling.
So i'm asking I guess for someone to tell me eventually it's gonna be alright and things will go back to normal soon etc.... etc... It's nice to have a place to go where people understand me and Uncle D. I went for so such a long time, over 18 months with no Uncle D.
Thanks,
Ann:wink:
My crohn's disease has become like the uncle that tells really bad jokes at the dinner table and comes to stay for the weekend and 10 years later he's still here. His name is uncle D
I had to stop Remicade due to all of the infections and flu like symptoms I had for 18 months. With the change of Remicade came a change of GI doctors.
My new GI doctor is a dream come true. She listens and is attentive and proactive. She believed I was allergic to the mouse protein in Remicade so switched me to Humira. I have had my first and second loading dose and take my first regular dose tomorrow.
After four days on the Humira all of my flu like symptoms were gone and for the first time in 18 months I could move freely and felt so much better. I was laying in bed a few days after my second loading dose and felt the familiar girgle in the spot under my left rib cage that is a subtle signal my body gives off that says get ready Ann Uncle D is coming for a nice long visit.
Sure enough within 24 hours D was here with a vengeance. My first line of defense of course if denial. I talked myself into it being cause by something I ate or a stomach virus. Even though I knew it was Uncle D. I never have that gurgle any other time. So After a couple days of 7-12 D's it calmed downs. I got a few days reprieve and it was back again on Thursday. So I broke down and called my GI.
What was weird was it was the actual GI that called me back. I never once talked to my old GI on the phone, I always had to go through his nurse. So she said she thinks it is probably just the switch of medication and she wanted to do a short taper of 3-4 weeks of PREDNISONE. I have been off prednisone for about 16 months and finally have my face back, I have a neck that is recognizable as an actual neck my camel hump is gone I have taken 40 pounds of the 75 I gained from being on Prednisone for two years before.
I never talk about my disease because I'm tired of Uncle D and really just want him to move out. But for the first time in my life I am telling the world well at least everyone on this site that I am so bummed, disappointed and down right disillusioned.
I started 40 mg. of Prednisone yesterday. Within hours I was feeling like I was coming out of my skin. The old familiar feeling of anxiety, sweating and anger all flooded back. I can feel my heart beating in my chest and just generally feel pissed off.
I am now in the "what if" stage today going through all the if scenarios that I hate doing but can't stop the racing thoughts. The last bad flare I had it took 60 to 80 mg. to get it calmed down.
The worst part. And I know I am ranting but I can't help it. I am a fraud investigator and I travel a lot by car all over California. When I am in a flare like this my life sucks trying to make a contingency plan for ever aspect of my life due to Uncle D. I go into strangers homes that are not the most savory characters in the world and I DON'T want to use their bathroom. So just imagine what I try to figure out. It's mind boggling.
So i'm asking I guess for someone to tell me eventually it's gonna be alright and things will go back to normal soon etc.... etc... It's nice to have a place to go where people understand me and Uncle D. I went for so such a long time, over 18 months with no Uncle D.
Thanks,
Ann:wink:
