June 3rd, 2014, 3:30am: I look at the clock on my computer, that’s what it reads. It’s late…or rather it’s early. But I smile because I can finally feel my eye lids starting to droop. Once again it’s been a night of chronic pain and no sleep. It’s also the night before my first Remicade infusion. I’m sure that there were some nervous jitters also adding the to the disruption of sleep. I’m really not sure why I was nervous about the infusion. I’ve had infusions before. I’m familiar with Remicade and all of it’s possible side affects, etc. And it was being done at a familiar place. Why was I nervous?
If there is one thing I have learned about living with colitis from…living with colitis…it’s that nothing is ever set in stone when living with colitis. Make sense? I mean this Remicade treatment could be the most perfect thing to ever happen to me…or I could be completely allergic to it, ending my attempt at medicinal remedy with a tragic crash and burn. Not that I’m expecting it to, I’m actually not. I actually think that this will be the thing to get all of these little post colectomy & UC life complications under control. I’m just being realistic. I guess there is a fine line between pessimistic and realistic? I guess. I call it being prepared.
As much anxiety as medical procedures give me (something that has gotten more severe since my stay in the hospital when my colectomy was done), I was surprised that I actually didn’t have as many anxious symptoms yesterday. There wasn’t any involuntary shaking or trembling. I was warm, but I didn’t sweat. My jaw didn’t clinch and I didn’t have dry mouth. Maybe because the procedure wasn’t going to result in mystery test results with some new diagnosis or complication. Maybe because there were very few patients and it was far away from the hospital building. Honestly, aside from being exceptionally sleepy, yesterday was not so bad.
My doctor orders an IV nurse to come in so there aren’t any mistakes and you get stuck one time. I love that, because I have very small veins that roll. Usually I ask for an IV nurse, I don’t like taking chances. They gave me tylenol and Benadryl to counteract any kind of reaction. Then they injected 3 100mg bottles of Remicade into my bag of saline. After that, I honestly cannot tell you what happened because my mom put a blanket on me, the nurse turned out the light and I went to sleep. Like knocked out, snoring sleep! LOL! I know, but with the lack of sleep over the last few weeks, the nervousness & the Benadryl I had no choice but to fall asleep. Two hours later, my mom woke me up, they checked to make sure the entire IV was done and then they sent me on my way. I go again next month and then the month after that. Then after August I’ll start going every two months…for however long I need to go.
I haven’t felt any changes yet. Honestly, all I’ve felt so far is very tired and very hungry! LOL! Like that prednisone hungry. Some people have told me that they have felt better within two weeks, some said it took up to 6 months. I’m just glad that at some point it will start working!