In Mexico, It's Called Remicado

I will now vividly recall the events of last Thursday, the day when Remicade made itself apparent as a non-opntion in my Crohn's fight.  Creepy stuff.

I went into the BIDMC Pheresis Unit at 7:15 to start pre-medicating [I had a reaction of chills and lower back pain during my second infusion, and we used Benedryl to help counteract it as it happened].  We tried both Hydrocortizone and Benedryl this time before my Remicade, to pack more of a punch.  

I was nervous at the start, I hate IV lines.  I felt more and more relaxed though, as I watched my favorite Girls- the Golden variety.  I was all set to start my third and hopefully, more successful Remicade infusion. 

I even got my own little tv.

I was super groggy from the Benedryl.  I started to doze a little when I felt the smallest sensation of restlessness in my legs.  I have been on steroids a number of times, and this is one of the side effects.  I have never had them through an IV though, and I wasn't expecting this feeling.  It was a bit strange, sort of just makes you want to shake it right out of your hands and feet.  You can't really do that in a hospital bed, though.  It passed after a couple of hours and really wasn't so bad.  Then, I started noticing that there was a heavy feeling in my chest.  I was tired and breathing slowly, this was more of a pressure that came on quickly.  I couldn't breathe as well, either.  My throat wasn't closing up, but I was definitely having a serious reaction.  

I called for my nurse, loudly, and she came and stopped my infusion.  Within the first 15 minutes of an IV Remicade infusion, and I'm not sure if this is for every drug, you only get 3 drops of the drug.  I wasn't yet that far in, and I was already having a reaction.  My nurse and I sat together as she asked me what I was feeling and helped me to stay calm.  Freaking out when these things happen will only make them feel worse.  You've got to keep calm so you can describe to the people around you exactly what you're feeling.  If you would have blindfolded me, I would have told you that there was a small elephant sitting on my chest, holding down my arms, while keeping his trunk over my mouth.  I just couldn't muster the breath to explain what was going on!  My nurse seemed to understand with the few words that I let out.  Then, the back pain came.  I have had lower back pain for the last few years, only really bothering me if I slouch too much, but this was different.  I had twinges of it during my first baby reaction during the last treatment.  A serious and very deep throbbing, this time.  I couldn't move my back at all while it ran through my spine. 

I waited before breathing, because it seemed to make it worse, but it only lasted about ten minutes after my nurse stopped the drip.  It sucked, but I was happy to learn that this treatment was something that I didn't want to go any further with.  I was bummed, because that meant continuing the search for what might bring relief from the symptoms of Crohn's.

A girl just can't win.

Think about it this way-- if you had just eaten a double burrito with fire ass salsa after a night of heavy beer drinking and needed to drop it somewhere, and this is what you saw everywhere you turned:

You'd be pretty frustrated, right?

I saw my doctor about a week after that whole ordeal, with labs in between and some phone calls about my other medications.  He thinks that Humira is the next step.  Thinking on it, in terms of side effects, it's like taking a step down from Remicade.  I'm happy about that.  I'm not as deep in research as I could be about Humira, but I will be, I've heard alright things.  I don't want to be on any drug, but my phlegmon is worse than we thought, and the bowel wall has been perforated.  It could result in an abscess, which would require surgery and ultimately mean more antibiotics anyway.  All of these drugs take their toll in different ways, and I certainly don't want more than I have.  5 is enough.

I am working with a Nutritional Therapist, a Psychological Therapist, my GI Team, and super supportive family to find out what's going to work best for me.  Time is an issue, and I'm trying to keep stress down.  It's nerve-wracking to have to think about this stuff all day, every day.  I'm becoming more and more frustrated that in every new direction I have turned, I've found another dead end.  I could cry forever.

Fuck that noise.  It's nice outside.