I’ve been in the hospital for almost ten days now due to my flare. It has been an eye-opening experience for me, and I’ve learned so much about how serious my disease is. Yes, I knew it was a dangerous and scary disease, but I didn’t realize that it would ever send me to the hospital. I do want to talk about my whole hospital experience, but I want to wait until I get discharged first.
Today, I’m going to be talking about Remicade. Remicade is an immunosuppressant medication that can help treat many autoimmune diseases, UC included. It’s not an easy drug to just take. It’s not an oral medication; it’s an infusion. I’ll talk about the process in a minute.
Remicade is an intimidating medication because it has many side effects: hives, trouble breathing, fever, chills, nausea and vomiting, stomach pain and the list goes on… I wasn’t originally put on Remicade. Most people aren’t when they are first admitted to the hospital. They put me on a steroid called Solu-Medrol, which I’m still taking. However, the steroid wasn’t cutting it. I was still bleeding excessively, and I was constantly being given morphine for the pain. I was given a colonoscopy (which was so painful by the way), and the results were bad. Two years ago, only part of my colon had been affected by UC, but now it had spread to nearly my entire colon. And that’s when my doctor said that I had to be put on Remicade. It was an emergency, and Remicade is for emergencies.
First, they had to give me a TB and PPD test, which took two days. It was so annoying because I had to be patient, and if they had just given me the test when I arrived at the hospital, then they would have been able to give me Remicade right away. But that’s beside the point. When the test came back as negative, they made a plan to give me the Remicade.
I was given my first infusion on Saturday night at about ten o’clock. Before the infusion, the nurses told me exactly what would be happening, and it calmed me down a little bit so never be afraid to ask! They preloaded with an insane amount of Benadryl and Tylenol. They did this to reduce the risk of side effects such as fever and pain. I would highly recommend preloading, so if you are going to have an infusion, please ask your nurse or doctor about it. They ran the Tylenol for fifteen minutes through an IV (I had the infusion through a PICC line though), and they ran the Benadryl for thirty minutes. They did this before the infusion, so by the time they started to give me the Remicade, I was knocked out.
I had fallen asleep, so I’m telling you this from my mom’s point of view and some blurry memories that I still have from that night. They started the infusion, and a nurse came and checked on me every fifteen minutes for the first hour of the infusion. The whole infusion took about two hours total. So every fifteen minutes, a nurse would come in and take my vitals: blood pressure, heart rate, breathing, temperature. Fortunately for me, I did not have any bad side effects. When they first started, my blood pressure dropped a lot, and they stopped and called the doctor to make sure that I was okay to continue the infusion. I was deemed well enough to continue, and the infusion went on. I also started having cold sweats. Apparently, I looked as though I had just had a fever that had broken or something, but I didn’t have a fever or anything.
So this is how it went for the next two hours. The nurse came in to monitor me for the first hour, and then she only came in once or twice the next hour. It was about midnight when the infusion ended, and I was exhausted when they woke me up. My mom had been sitting nervously by my side for the entire thing. They left me alone after that, so I could sleep, and I woke up late the next day.
The day after, I felt like a changed person. I was much more happy and peppy. I was sitting up rather than lying down, and the pain had been reduced significantly. The only thing that I noticed was that I would get a little dizzy when I stood up, so I would have to take it slowly. I only had to take morphine once that day, which was such an improvement. I didn’t have to use the restroom as often, and the bleeding had ceased. Finally, it felt like I was getting better! I had turned a corner, and there was some hope for me.
I have been NPO (nothing by mouth) for about ten days now. It’s weird for me to think that I haven’t eaten anything in that long. They’ve been feeding me by a TPN via PICC line. Unfortunately, the TPN goes into your blood stream and not your stomach, so I was downright ravenous at this point. When you’re in pain and on morphine constantly, you kind of forget about hunger, but once you start to feel better, it’s an entirely different story. I wasn’t allowed to eat the day after the infusion, and I knew that even though it was so painful to be hungry the whole day, it was for the best. My colon had to heal a little bit before reintroducing liquids and solids.
Today, they decided to give me clear liquids for the first time! Yay! My mom gave me coconut water and chicken broth today, and so far, everything has gone down okay. No pain and no bleeding. However, after not eating for ten days, my stomach feels slightly uneasy, and I’m having some uncomfortable cramping. This is totally normal though! When you don’t have anything for that long, your stomach starts to get air in it, and when you start to eat again, it pushes the air through, which is why I’m experiencing some discomfort. The plan for tomorrow is hopefully to start some soft solids. You don’t understand just how excited I am to eat after not eating for so long.
So my first impression of Remicade isn’t over just yet. I’m actually writing this in two parts because I didn’t want to talk about how amazing it was and then have something happen, and I’m suddenly not fine, and I have to go back and tell everyone that Remicade isn’t so great. But so far, so good! I really like Remicade. The infusion wasn’t too bad, and I haven’t had any complications yet, so I’m very happy with the results.
My next infusion is in less than two weeks, and I will make sure to write about my experience then too. Remicade just might be my savior!
Let me know if you’ve tried Remicade and what your experience was. Everyone seems to have differing opinions on it, but I think it works really well. Feel free to ask me any questions, and I will make sure to answer!