The Unthinkable, or So I Thought

Go Figure.

I last wrote about the good luck I've had with Remicade. Well, I'm not certain what the problem was but I've had my first reaction to Remicade. Like I said before, I was scheduled for a treatment at 8:30 am on Wednesday the 17th. I've had Remicade at this clinic before so that wasn't a first; they used the same pre-meds as before (Tylenol and Benedryl) and I've never had a reaction for the last year and a half of taking Remicade.

Sorry for the delay in the post. I've been away since Saturday recruiting for work at the University of Missouri (my alma mater).

Here was my experience. Sorry for the length of the entry.

About a half an hour into the treatment I woke up feeling very feverish and flustered. I tossed off the blanket that the nurse had given me and sat up. My chest felt very tight and my throat very dry. I took a few sips of my ginger ale and attempted to calm myself. I had never felt this way before and didn't know if it was an allergic reaction or what. I have felt slightly flustered before but was able to control it and this was definitely a whole different story. About a minute passed and I made eye contact with a nurse and told her that I thought I was having a reaction.

That's when things went sour.

The nurse immediately called for help as well as told another nurse to call for medical assistance. Apparently I was 'firetruck red', as she put it, and my eyes were dilated. At this point, I also began feeling very nauseous. It took most of my focus and I spent the entire time trying to calm myself as well as keeping myself from vomitting.

One nurse was taking vitals, another directing, and another two were taking me off of the Remicade and onto some fluids. The nurse taking vitals noted that my blood pressure and pulse were erratic. They would go drastically high for a while and then scarily low. About five minutes into this ordeal, I once again hear over the loudspeaker, 'medical assistance required in the oncology infusion room.' Soon after, there are 5 doctors surrounding me overlooking and supervising the situation.

I can't say that I was much help to the nurses and doctors as they were frequently asking me questions and receiving no answers. I felt very out of it and had no desire to talk. The doctors and nurses were debating calling 911 as I lie there motionless. I can't remember what drugs they used to stabilize me off the top of my head but I know they pushed three things: a steroid, benedryl, and something else. I heard one doctor tell the nurse to call 911 to be sure and at that point I decided I wanted to talk and barely murmered 'I don't need to go to the ER, I'm feeling better.' The doctor informed me that it was their protocol to send a patient to the ER for observation if the patient's BP dropped as low as mine did. I didn't argue. I didn't have the energy at that point.

After my first ride in an ambulance, a nap in the ER, and a crappy hospital sandwich, I decided I'd had enough. I asked the nurse to discharge me since I was feeling better. I hopped a cab back to the clinic and drove to work regardless of my secretary continually telling me to go home and go to sleep. I needed to do something today. I felt worthless and I hate it when my Crohn's interferes in my life. I missed one meeting that my secretary rescheduled for me but atleast I got a few things done at work.

Looks like there will be many chats with doctors in the coming weeks. I only received 1/5 of the Remicade dosage and will need to try it again fairly soon. I will post updates soon.

Favorite Day

So tomorrow at 8:30 a.m. I get to have another Remicade Infusion. I usually love these days and the 1st few weeks to follow. Seems I've gotten ahead of myself...

When I was first diagnosed, my GI had me on Entocort as the primary drug along with a few others since my Crohn's was focused on my ileum and sigmoid rectum area. After 5 months of nothing, another doctor decided to add Pentasa and some others. At one point, as I was taking 22 pills per day, I just knew that this wasn't going to work.

About 8 months after I was diagnosed, I began my Remicade 'loading' phase. I can remember it clear as day. The day after my first infusion, I woke up to significantly reduced pain/cramping and the hope that I had found my miracle drug. I know a lot of people who have horror stories regarding Remicade but it has truly been a blessing to me.

That was until I began 'leaking'... which led to a lump... leading to a full blown abscess. I'm talking can't walk, crying because the colorectal surgeon is busy, screaming bloody murder during the draining kind of full blown. "Hmm he's not supposed to feel this that much" says the a**ho*e of a surgeon to his nurse as I'm bent over, pants around my ankles wishing he had knocked me out for this. I could only imagine what the patients in the waiting room were thinking as they heard a young man screaming profanities at the top of his lungs. I've never wanted to hit someone as much as I did that doctor. Let's pray that doesn't happen again. Only advice I can give there is get on a high dose of antibiotics quick and if there shows no signs of improvements, then get it drained before it gets too large.

So here I am. Literally sitting in the tub (2 a day baths in hopes of healing the wound) writing before I go to bed.

I realized about a week back that I took for granted the time when I was healthy. It also made me think... People say that happiness is the most important thing in life. I beg to differ, IMHO health takes the cake.

First Impression! The Introduction.

So I don't really know what my goal is for this blog but I wanted to start it up and get going. I know people out there have problems and it's always helpful to hear other people's experiences so that's partly my intentions.

I guess a proper introduction is warranted.

My name is Chris and I'm 23 years old. I graduated from college in May of 2008 with a BS in Electrical Engineering and a BS in Computer Engineering. I took a job with ExxonMobil and am currently working and living in the DC area.

I was diagnosed with Crohn's Disease in the summer of 2006. Since then, I've had way too many colonoscopies and been on way too many drugs including Imuran, Pentasa, Entocort, Flagyl, Remicade, and about a handful more that I can't quite recall at the moment. I'm currently recovering from a fistula and abscess that was drained. It's a very long recovery and could potentially never heal properly. That's a very quick overview of where I'm at now. Details will follow.

I know my situation isn't that bad when compared to other people, so please don't think that I take that for granted. Are people out there reading? I don't like reading long posts on other people's blogs so I'll try and keep all of mine short. I encourage people reading to post comments if you'd like to hear more or ask questions. I think it's a great thing to share experiences and feel like you're not alone.