Need to vent :/

[Pipergirl]

need to vent :/

so it has been about 2 months with my diagnosis. FRUSTRATING is all i can say. i know everyone is going through similar if not worse but im approaching my breaking point. So for the first couple weeks after i got out of the hospital, the prednisone was working like a champ! then the tapering began and so did my troubles. I was almost completely off then it all started coming back, the horrible pain, bleeding, etc. so my doc decides to put the prednisone back into full force. no such luck...i think i may have built up a resistance to it. well all summed up. i am in discomfort/pain all day everyday, i have grown to HATE food, and im frustrated beyond belief(the one thing working about the steroids is my emotional flares haha) i cry practically everyday out of pure frustration and pain. i just want it all to stop, even for a little bit. and now my doc says i might have to go on remicade, which makes me sort of nervous. i just want it all to stop and be able to join the remission crowd. i am grateful that i dont have the worst case scenario though, dont know how you all do it

 

[Jessi]

Hey, Piper. :hug: I know you're scared, but if doc is recommending Remicade, I would seriously consider it.
After all, Remicade is responsible for my remission.

I've been in your shoes and detested food, but I have grown to love it all over again.

Don't give up. There's a way outta this mess. :hang:

 

[xJillx]

I am so sorry to hear pred is not helping at all anymore. I agree with Jessi, perhaps a stronger treatment plan is needed.

Hang in there!!

 

[suschex]

I am so with you! I was dx'd on Oct. 10, 2011. After 8 weeks on 40mg Pred. and no better it was decided I was steroid refractory and I started Humira...no change yet but I am only the first 6 injections into the treatment...dr. said I have to wait to 12 weeks to see if it will work...then on to remicade if not...

I know the frustratin is insane....I feel it so much too...and the idea that there is nothing else to be done but wait and see if the next med will bring on remission. I thought remission was sort of a given once you started treatment but am realizing it may not work that way.

Hang in there...you are not alone....Remicade is supposed to be great for some people...I hope you feel better soon and get into the remission crowd!!!

 

[SdN]

If pred isn't working the part of your small intestines that absorbs it may be flared up. If so you would need to go in an IV push of steroids, basically an injection. It happened to me and I had a 2 night stay in the hospital while they injected me with 20mg of steroids every 8 hours. They wanted to keep me longer but I had to start a new job the following Monday so I talked them into letting me leave. Fortunately the 2 night stay was all that was needed for me for the oral pred to work again. I know you're in a lot of pain stay strong

 

[suschex]

SdN - thank you for the information! The colononscopy showed disease thru my entire colon but not my ilium and the CT with contrast showed no disease anywhere in my small intestines or anywhere else...I hope that was correct.

 

[Pipergirl]

wow thanks everyone for the support! my colonoscopy and endoscopy at diagnosis showed disease all through my esophagus and intestine. new info from the doctor shows that i am at the max dosage of 6mp that my liver can handle but im not absorbing it correctly so onto the remicade i go. Nervous but i just want to feel better. plus i cant wait to get off the pred. not my favorite medication haha

 

[Jessi]

Sorry that you have to switch, but I do hope that Remicade will work for you as well as it works for me. :hug: Join us in the Remicade Club here. http://www.crohnsforum.com/forumdisplay.php?f=58