I rarely blog about having a chronic illness, but the main question that I get from people isn’t an affordable foundation recommendation or where I got the booties I wear 90% of the time – it’s about the infusions I receive. So today’s post is going to explain what my Remicade infusion is, what to expect if you get an infusion, and the best ways to prepare for it. I know this post may not be relevant to the majority of my readers, but I’m excited to create a resource for those who need it. I want to preface this by saying that I’m not a doctor or medical professional, I’m just sharing my experiences and what has worked for me.
What is an infusion?
This is probably the easiest question to answer. When you get an infusion, you are receiving your medication intravenously. This allows it to go directly into the bloodstream.
Why do I have infusions?
I have infusions because I have ulcerative colitis – a chronic illness that causes my immune system to be overactive and attack healthy cells in my GI tract. My Remicade infusion blocks the protein that is overproduced and attacking my immune system. For the first diagnosed year of my illness, I was able to treat UC orally with chemo pills. When my body stopped responding to oral medications, the next step was to try an infusion. I’ve been really fortunate, because the infusions have worked for me for six years.
What are my infusions like?
I’ve had infusions multiple places over the past six years – pediatric and PICU units of the hospital, in an arthritis clinic, and now in an extensivist unit. I leave work early, check in at the extensivist unit, and I’m taken back to my little room. If you’ve ever seen chemo administered, it’s really similar to the way that the Remicade infusion is administered. I chill out in a recliner, take my pre-infusion cocktail of Benadryl and Tylenol, they mix my medicine, and then they hook me up to an IV. It’s simple, and I have the next three-ish hours to do whatever I please… as long as I don’t plan on going more than five feet. When I stopped treating my infusion like a burden and started treating it as an opportunity to have “me time,” my whole outlook on the situation changed.
How do I prep for an infusion?
My three biggest tips are to hydrate, dress in comfy clothes and pack an “infusion bag.” Hydrating is important because it makes your veins nice and plump. #yum Sounds gross, but you want plump veins so that it’s easier to get the IV in there. I’ve been told that caffeine shrinks your veins, so I try to avoid it 48 hours beforehand. Because I’m going to be sitting for a few hours, I like to wear comfy clothes that I can also wear to work that day pre-infusion – usually a dress with leggings or a tunic with these pants that are more comfortable than jeans.
When I first started receiving infusions, my mom went out and got me a new bag specifically to serve that purpose. It doesn’t have to be anything special, but I always pack one, because you are pretty much tethered to a pole and have to create your own entertainment. Here’s what I like to pack in mine:
Blanket poncho // Medical offices are always freezing in my opinion, but I don’t want to be that girl that lugs in a blanket. Blanket ponchos are awesome because they’re clothing and a blanket.
Adult coloring book + colored pencils // I brought these with me to my infusion last week, and it kept me occupied and relaxed for quite some time. I hate feeling like I’m not being productive, so adult coloring books offer me the chance to chill out and have results.
Books or magazines // I don’t touch magazines in doctors offices. They just freak me out. Bringing a book or magazine is a great way to pass the time, and sometimes I cut off my address and leave the magazine for the next visitors.
Snacks // I always get really hungry during an infusion. The nakd bars that I tagged are awesome, as are peanut butter crackers. I’m usually cramped for time before an infusion, so I bring my lunch since I have a private room.
Hydration // I discussed it above, but hydration makes things go sooo much smoother in my opinion.
Headphones // Sometimes the dead noise just wears me out, so I like to listen to music on my phone. Or I’ll pop on headphones when I want to cover up in my blanket poncho and take a little snooze.
Chargers and/or a power bank // I play on my phone a lot during my infusion, so I always bring a charger or a power bank just in case. The last thing I want to happen is to have a dead phone when people know I’m getting an infusion… they’ll freak out!
Hand Sanitizer // In case you accidentally touch something or in case you want to eat a snack.
What are the side effects like?
After the infusion, I take time to chill out. I allow my body to recover. I usually feel weak, tired, and irritable the day of and the next two days following. (There’s a good chance you will wake up the next two mornings feeling like you got hit by a bus.) My appetite is absolutely fantastic, and I take complete advantage of that. Sometimes in the days following an infusion, I get the spins; it’s not my favorite, but life goes on. (I flew to Mexico the day after an infusion once, and between the turbulence and the spins, I legitimately thought I was going to die.) I get my infusions ever six weeks, and my body knows the schedule – about five days before my IV, my energy level and appetite tapers off.
The biggest side effect is that I don’t have much of an immune system. The first year that I had infusions, I caught freaking everything – mono, walking pneumonia, strep so many times that I had to get my tonsils taken out, you name it. It sucked, but I think that was partially because it was also my first year in a dorm. It has made me much more cautious about my health hygiene – before I wouldn’t have thought much of touching a door or touching my face. Now I carry hand sanitizer everywhere (plus lotion, because it will dry your hands out so badly!), avoid touching pretty much everything, I carry my own pen, avoid cash like the plague (it is seriously so dirty!), and if I have to go to the doctor during flu season, I wear a mask. I get vaccinated for everything they will let me get vaccinated for, especially my flu shot. It seems excessive, but you would be surprised at how quickly you get used to it.
Author’s update (April 2019)
This post was written 3.5 years ago, but continues to be one of my most visited posts. It felt appropriate to include an update. This summer will mark 10 years of a better quality of life thanks to Remicade! It’s hard to believe that when I first started taking this medication, I was too sick to even move from the couch. Now I live a relatively normal life and stay extremely healthy for someone who is immunosuppressed.
I switched GI specialists last year and started going to a different infusion clinic. It’s a little different; I don’t have a private room, another patient and I share a nurse’s office. However, everyone is extremely friendly, and no one minds if I need a nap. I do typically try to eat lunch before I come just because of the close quarters, but I often bring a snack because my appetite kicks in during the infusion. (I’m also very fortunate because another health system switched all of its patients off of the Remicade infusion, and somehow my little center is still providing!)
I took an antibody test a few weeks ago, and it was determined that my body is still reacting well to the medication! Such a relief. And I do still pack an infusion bag, it continues to make life easier.
If you have any questions or need encouragement before your infusion, send me an email! I’d love to help you, answer your questions, or just assure you that it’s all going to be okay.
Happy Tuesday, y’all!