Wednesday, September 23, 2009

I need a fix

My Remicade infusion is just over a week away, and I want to die!! I started Remicade April of '08. It's the last ditch effort. Right after my colonoscopy was over, the dr. had the nurse start my first Remicade infusion. He said "you are so sick, I can't send you home w/out starting now." It has helped to the point of I wouldn't NOT get it. As far as being my saving I was scheduled for a total colectomy last July when we found out I was going to deliver something other than a colon. So now that my sweet little baby is here, it's looking like early part of next year to deliver Lucifer. That's what I call "the colon"

I get the highest dose, as often as they'll let me. They've even tipped over the highest dose to give me 11 vials every 6 weeks. It takes a good week to kick in, and is gone at least a week before. I still RUN to the bathroom constantly, and don't dare go anywhere because of the urge. On a positive note i've gone from blood, mucus, 15-20 times a day to 8-10 not much blood, and no mucus. When the Remicade is actively working in those 4 weeks.

Ya know, I think I could live with going to the bathroom all the time, but the urgency is too much. Nothing sucks worse than getting up at 3 am to make a screaming baby a bottle, and shitting yourself. Luckily my fan-freakin'tastic husband was there to take over.


  1. "Lucifer", ha, ha, that's funny! I agree the urgency is horrible. I think we can all learn to deal with the pain, and the constant trips to the bathroom, but really not being able to make it to the bathroom is the worst. Like you didn't have enough laundry to do with a baby, right? I have a two year old son and it is the worst feeling when he is crying for me and I can't come because I'm in the bathroom (or headed there). Do what you want to me UC, but leave my son out of it!

  2. Should you go through the colectomy (jpouch surgery) I can tell you just two weeks post takedown I already have far more control with my bm's than I did with UC. Whatever you do I wish you luck!