I'm going into Day 7 at the hospital enjoying my lovely view of the brick walls! I might be able to break out on Saturday, but until then, I'm hooked to potassium enhanced electrolytes via a PICC line. Lovely!
I've had a really really rough week, and I'm now on 40mg of steroids (via IV - going to oral tomorrow). I'm nervous. He said 5-7 more days and then we'll start to wean as the Remicade (now 10mg/kg) should hopefully pick up and we'll see the relief. I'm nervous. Nervous that the Remicade can do no more and we'll be headed off to Cimzia or Humira or possibly surgery. I'm frustrated with that all. Oh, and they put me on Bentyl today which is causing me to be sleepy, but I think it's what has done the trick on my bowels! Looks like I might have a touch of IBS and/or spastic colon on top of my Crohn's.
But, more important, who is dealing with steroids and who gets tons of symptoms with them? I think my face is already starting to swell some, it's already getting oily, I'm starting to pick up hungry and I'm going to have to make an appointment with an opthamologist to ensure my eye pressures don't fluctuate. The steroids caused slight cataracts in my eyes last time I was on them. Oh, and I'm getting some insomnia from them....
I hate steroids! Hate them! Just wondering if anyone has some tips on how to get through with them. I'm thinking once I'm released they are going to keep me off work for 1-2 more weeks. I've been sick at home for one week and sick in the hospital for another... and my blood levels were at 8.9, but stabalized and started to rise.
Hmm...that's a rambling post! But, I'm anxious to get out of here... Would love to hear coping mechanisms as I've had a really hard time "dealing" with this flare. I usually have a very good outlook on things, but this one has bothered me to no end!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Remicade - Next infusion - July 10th - new dose - 10mg/kg
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 11 months old