Ulcerative Colitis Tips


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My First Remicade Experience

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!

Positive Results

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!




colitis, infusion, IV, Remicade

12 Responses to My First Remicade Experience

  1. Ash March 3, 2010 at 7:41 pm #

    wow, your experience was totally different than mine. i don’t get my infusions at a hospital. i go to a specialized infusion center. it reminds me of a chemotherapy room because there’s recliners with IV poles and personal blood pressure machines and such on the table next to them. there’s also tv’s and if you bring a book or laptop, you can use that as well.

    i walk in and they give me my benadryl and tylenol both by mouth. they start the IV on my arm and then they get 10 medium sized vial bottles of Remicade out and transfer the medicine into the saline bag. then they hook up the bag to my IV and my infusion has started. they also check vitals every time they bump up the speed the Remicade is dispensed. i asked them why they speed it up gradually and they said it was to watch for any signs of reaction to it.

    when i’m done, they take out the IV like normal, slap a bandaid on and i’m done. my whole process takes maybe 3 hours from the time i walk in to the time i leave.

    i’m on the maximum dose possible for Remicade. I’m also having to go every 4 weeks instead of every 8 because my pancolitis is so severe. I’ve been on Remicade since July 2009 and the first few infusions I felt incredible. i hadn’t had that much energy and felt so well in the 5 years i’ve been diagnosed. i’ve also been on every medication under the sun, all to no avail. My doctor is giving the Remicade a few more months to see if it works, then my only other options are Cyclospoine or surgery.

    i’m glad it worked for you, and it’s crazy how different a hospital versus an infusion center are in terms of how they administer the medicine!

  2. Matthew March 5, 2010 at 5:55 pm #

    I was also going to answer your question about why they administer it slowly. Yes, it’s in case you have a reaction.

    My infusion room has no beds… just 3 recliners w/ side tables, jammed in there with a TV and refrigerator, as well as the nurse who’s mixing all of the medication for her patients. It’s pretty cramped, but I still bring a lot of books to read, and my laptop to slowly surf the internet a little.

  3. Sarah July 21, 2010 at 12:39 pm #

    I have been on Remicade a couple years, every 7 to 8 weeks.. my experience is much like Ash’s. Lately, I always tell my husband to stay away from me for a couple of days after my infusion… I get in a bad mood, am super tired and am a total nut job. I swear the stuff makes me crazy for a few days? wondering if anyone else has a similar reaction? But don’t get me wrong… remicade gave me my life back!!

    • Heather May 7, 2013 at 4:45 pm #

      Hi! I know this post is three years old, but it made me laugh! Thanks for your honesty Sarah. I am actually looking online to see if others feel crazy the day of their infusion, which was today for me. This is my third Remicade infusion, and I feel it is really working, but I feel insane right now, like I want to cry and give up in general, and it is completely irrational. I keep running through the good things in my life in my mind and the fact that I felt well this morning. I just need to sleep it off, haha I love that you said you are a total nut job, perfectly describes what my mind is feeling right now. I sent my 9 yo out of my bedroom and asked her to not ask any questions until tomorrow, because I felt like her basic questions were pushing me over the edge of crazy.

      Everyone hang in there, I know this is working for my AI RA and AI Hepatitis, my good days finally outnumber my bad days. God is so faithful:)

  4. Sheli July 21, 2010 at 5:03 pm #

    Hi Sarah!

    I totally feel the same way about Remicade! I am the world’s worst grouch the day of. I swear it’s because of the pre-meds. Benedryl makes me feel like I’m depressed. But honestly, Remicade has worked wonders for me too. I’m getting it this Friday night, “yea Friday night Remicade plans” :D

    It’s not my favorite thing, but it is so helpful.

    thanks for sharing!
    -Sheli

  5. Mel January 22, 2011 at 6:32 am #

    Hi Guys…
    Been diagnosed with UC 2 years ago. I have procitis..Been on sterioids and all the usual drugs. Even had a stay of one week in hospital on high dosage steriods (2 months ago). Symptoms are back…now doctors are looking at infusion treatment if this dosen’t work surgery (to remove half my colon…not good). All medication has failed so far…so a bit sceptical about IV infusion treatment. How long are you in hosptial for, after affects, has your symptoms come back on the IV treatment.

    Thanks
    Mel

  6. Sheli January 23, 2011 at 9:56 am #

    Hi Mel,

    I understand your concerns with the IV treatment! It sounds so overwhelming and serious right?! I’m sorry to hear about your symptoms too, it’s hard to keep thinking somethings going to work when nothing has so far. But I think there is good reason to be hopeful about Remicade. I know for myself and many others, Remicade was the first drug that showed noticeable improvements. A new way of approaching UC is to actually try Remicade before putting patients on the steriords rollercoster.

    As for how long you are in the hospital for, it varies. The Remicade medicine only takes 2.5 hours to infuse through the IV. However, infusion facilities vary in how long they actually take to get to you. I’ve had my infusion done in the hospital also through a home infusion service. Some people get it done at an infusion only place (like the post above). In my experience at the hospital, it can take all day. I was there generally for 6-8 hours becuase they have so many other patients to attend to so your waiting a lot. You wait to get a bed, to see the nurse, to get the remicade, and then to check out. But even so, the Remicade part only takes 2. 5 hours, it’s just everything else that takes awhile, bring a book :D

    The symptoms come back depending on how it works for you! After they give you the first infusion,
    they give it to you again on the 4th week, then they wait for 6 weeks, and then wait 8 weeks. Typically, the Remicade is then given every 8 weeks, but everyone is different. I started to notice its affects wearing off around the 6th week, then 7th, so it got better with time. But once you start getting it, you’ll just figure our if you’d rather be on a 4 week cycle up to 8 weeks, whatever is best for you.

    Hope this helps! And again, the choices about what to do about your UC are really hard sometimes. At least know that you’re making these choice along with so many other people, and remember that you’re doing your very best to try to feel better!

    Take Care,
    Sheli

  7. Chassie December 19, 2012 at 10:47 am #

    All of this info has been so helpful – I go tody for my first infusion and Im really nervous. I have been living with CD for 7 years now.

  8. Melissa September 11, 2013 at 8:08 am #

    I was diagnosed with UC July 2, 2013. I was hospitalize for 5 days. I had my second Remicade infusion yesterday. Yes, I have noticed I do not have as many bowel movements, but I feel really wiped out after the infusion. I have never been given Benedryl or Tylenol before my infusion. I do get a very intense head ache afterwards. I will be telling them that before my next infusion in 8 weeks.

    • Michelle September 15, 2013 at 5:41 pm #

      Wow you are already on biologics only being diagnosed for a couple months? Did they try any other medications first?I had my first infusion almost 2 weeks ago, tried humira for a couple months just before that. I’ve been diagnosed for 10 years but this is the first time I’ve had trouble responding to medication not sure yet if the Remicade is working.

  9. Michelle October 8, 2013 at 12:04 pm #

    I was diagnosed with UC 9 years ago. I just had my first Remicade infusion yesterday. Slept horribly last night and have been burning up all day today! I just can’t seem to cool down. Anyone else have a similar reaction?

  10. Dennis June 13, 2016 at 12:43 pm #

    Thank you so much for sharing your experience!! This has truly helped to reduce my anxiety headed in for my first treatment!

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