The Day Before
I was really worried about what it would be like to get my first Remicade infusion. I have only been there to visit people or to go to the emergence room when I was little! I didn’t even know what I could do, eat or bring with me while I was there. So I ventured to the internet and read about other people’s experiences.
I got tons of answers to my questions and packed my backpack with a lunch, some books, my laptop with movies on it, a blanket, warm socks, and my iPod with headphones…. I was definitely over prepared! I also read that it was helpful to bring someone but I just decided that I would go by myself. I’m not sure all the reasons why I didn’t want anyone else there, but I wanted to see what it was all like before I brought someone.
The Big Day
I woke up the morning of my Remicade infusion nervous, but I felt prepared. I totally found the parking easily and the Admitting office where I had to report to first. I was surprised to find that going the Admitting office was just like waiting at the doctor’s office. The hospital isn’t like House or Grey’s Anatomy where everything is super modern and packed full of energy from all sorts of dire emergencies going on all at once! I actually had to fill out paperwork and go over my insurance stuff. Luckily the lady I met with was chatty and answered all sorts of new questions I came up with! She then walked me outside the office and showed me where to go to get to my room.
Once I got to the “Short Stay” area, I had to check-in at the Nurses Station just like I did down in Admitting. It was so official too! My name was on a white board and they were totally expecting me! A nurse then told me where my room was and I just started nesting in. I unpacked my belongings and put them on this cool little desk thing they have that fits across your bed. I also got to play with the sweet bed that moves without someone telling me “that’s not a toy”!
The Short Stay area was kind of weird though. There were people in beds and nurses going from place to place, but I guess I expected them to walk me through what was going to happen that day. Instead, they just did their own thing and got to me when they were ready. I soon realized this is the norm around the hospital.
I actually waited around about two hours before my medicine was ready. Eventually my nurse came in and gave me the run down for what would happen. She was really nice and friendly, which made the experience much better. She explained to me that I would get Benadryl and Tylenol a half hour before the Remicade, which is called your “pre-meds“. She also said that Benadryl usually makes people tired and they sleep through the whole infusion!
Soon after we talked, my nurse came in and hooked me up to the IV. I was surprised to learn that the IV is just hooked up to a bag with fluids in it. Every time my I had medicine put it, it was connected to the tube which had the fluids flowing in it. Getting the IV all set up in my arm was a little weird, but all in all, it’s totally not that bad. She just pricked my arm and then left this little tiny tube thing in there, which I could not feel. Then she hooked up a bigger tube thing to my tiny tube and connected the fluid bag to it. Then I was stuck. I had a tube in my arm, connected to pouch, hanging from a cart! But you can still go to the bathroom; you just have to drag the cart with you. And you can also still move your arm; it just feels a little weird.
After putting in the IV, she gave me the premeds. My arm felt more sensitive when she started putting infusing me with the Benadryl. Unfortunately for me, the Benadryl didn’t make me fall asleep as it does for most people. I just got jitterier, anxious, and little overwhelmed. I definitely couldn’t sleep, but I felt really sedated. After I started feeling that way, I just tried to relax and take a nap. I didn’t sleep, but just laying there was helpful.
My nurse came in with the Remicade about 30 mins after she gave me my premeds. It came in a glass bottle that hung on the cart. She just hooked up the Remicade to the IV tube and I didn’t feel a thing! Getting the Remicade was the easiest part of the whole day! The Remicade takes about 2.5 hours to work its way in, so there’s more hanging out time. Even though the Benadryl made me a little crazy, eventually I was able to eat some lunch, talk on the phone, and then watch some movies.
My nurse also came in about every 30 mins to check my vitals. She also increased the rate at which the Remicade was dispensed. I’m not sure why they do this, but they start it out slow and then they increase its frequency. It was nice to be checked up on too, I wasn’t just left alone for hours!
At the end, my nurse came in to take out the IV. She just pealed back all the tape that secured the tubing down, and then took the little tiny tube out of my arm. She made a little band aid over where the IV was and that was that! I didn’t need to fill out paper work or sign-out, so I just said good-bye and packed up my things.
Even though the Benadryl made me feel weird, it was wearing off enough for me to drive home. However, when I finally arrived home, I was surprised by how exhausted I felt. I think being at the hospital and going though all the new experiences was draining. I couldn’t sleep at the hospital, but I could finally relax in the familiarity of my apartment!
I started noticing significant improvement of my UC within a couple of days! No other medicine I’ve taken (Hydrocortisone, 5-ASA, 6-MP, and Prednisone) has given me such quick and effective relief from my UC symptoms! Just after a few days I only had one or two bowel movement a day. I still have a lot of blood in my stool, but I don’t have painful bowel movements, diarrhea, cramping, or bloating … it’s amazing.
I totally waited way too long to try this. I was so scared to take even more medicine and frustrated by taking medicines that never seemed to work well. It’s definitely a process when you’re trying to determine what medicine is right for each person with UC. I still don’t want to take medicine for my whole life, but for right now it’s helping. I’m also actively pursuing managing my stress and diet. My hope is that my body will have time to rest while I’m on this medicine for awhile and then slowly I’ll be able to get off some of my other medicines. For the long-term, I also hope to fight this though a drastic change in my diet and stress level.
Things I will do differently next time:
There are two things I’ll do differently next time I go for my Remicade infusion. First, I will bring lighthearted movies instead of action/adventure types. That Benadryl already made my heart race and having exciting movies didn’t help! I will also see if I can bring a family member or friend. I think it would help to pass the time and get have someone else to join in this crazy experience!