Life with a Chronic Illness: Infusions | Seersucker Sass

Tuesday, October 27, 2015

Life with a Chronic Illness: Infusions

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 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 infusion (Remicade) 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 Remicade 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.

Anything else?

If you have any questions or need encouragement before your infusion, send me an email!  There's a contact box on the side of my page :)  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!


  1. I found this very interesting to read and learn more about the chronic illness. Having a bag is a smart idea with nice things to occupy your time. Have a nice day :)

  2. So glad you shared this, girl! I've been in and out of doctor's offices lately, and even though I am not receiving infusions, these are good essentials for just sitting in a waiting room for long amounts of time! I need one of those coloring books!

  3. Oh wow, it was really interesting to learn about your infusion process as an outsider.
    What great essentials for keeping yourself busy.
    I need to get my hands on one of those adult coloring books.

    xoxo, Jenny || Breakfast at Lillys

  4. I don't have infusions but I still found this post incredibly interesting. I am sure the tips you shared are super helpful for other young women going through the same thing. I know my Dad has to get infusions of remicade-he hasn't ever really talked about the process so I had no idea what it was even like. I think it is wonderful you try and look at your time in the hospital as "me time".

  5. Oh wow! You are such a trooper! I love that you look at it as me-time--that's so positive!

  6. Really appreciate that you took the time to address the reality of getting regular infusions and living with a chronic illness. It can't be easy. Your essentials and your positive perspective about the whole situation make it seem so bearable! This is such a great and relatable resource.

    Alessandra |

  7. So I totally agree with everything you said. I have a really rare form of anemia so I have to get transfusions every 4-6 weeks since coming off prednisone. I've been getting them my entire life and up until about 3 years ago I got one every three years, now not so much. I totally get it about the appitite and your body knowing. Unfortunately I have to wait till my hemoglobin gets low enough to transfuse. The waiting he sucks. If you ever want to talk or text I'm here. Oh and I get two units of packed red blood cells. And because what I have is Diamond Black Fann Anemia. No one knows about it and it's genetic.

  8. What's crazy is that my uncle has ulcerative colitis. I'm glad you're finding ways to treat it…I know he wasn't that lucky @ a young age, as it was years and years ago. Sending my love gf! x Nicole |

  9. Wow. You are so strong. I have a chronic illness too (fibromyalgia) but feel nowhere near as strong as you are. I love your entertainment items and your outlook on the whole situation!

  10. I am amazed by your strength to continually do infusions. I really found this post interesting, because I don'y know much about it. I feel like I learned a lot about you in this post and that makes me smile! I have so much respect for you. Keep on coloring and keeping your spirits up! You're the best!

    Nicole // Chronicling Home

  11. Such a great awareness post. I admire your strength for sharing!

  12. These are great tips - thank you for educating us all! What a great way to change the way to think about it!

  13. Wow, what a thorough and well written post! I love that you mentioned to think about it as "me time" that is such a great outlook!

    Sara Kate Styling

  14. I absolutely loved this post and learning a bit more about your chronic illness! I had no idea that you had this for so many years. I love how positive your attitude is about getting your infusions done - definitely something to admire. :-)

    xoxo A

  15. I am sure this will be an amazing resource! I love that you have spun it to be time away for yourself. I just got an adult coloring book for my vacation last week and it was so relaxing to just color and focus on that.

  16. I love that you are so willing to share this with others, especially those that may be scared at the idea of going through the same thing! When my husband's grandmother started getting dialysis this past year I bought her a blanket poncho and an adult coloring book-she loved them and still uses them on her trips-she says they make her feel young ;)

    xoxo, SS

    The Southern Stylista

  17. What a helpful post for people with a similar condition! You are so strong to deal with your health problems with such courage and grace! Love your attitude!

  18. I found this very helpful. I just received my first remicad treatment last week. I didn't have any noticeable symptoms until 5 days later. I was extremely tired for at least 4 days and lots of arthritis inflammation. I'll be getting my second infusion in 4 days
    I hope things get better.

  19. Wow thank you for the share, it was on point!! I get Infectra infusions every 8 weeks, for Crohn's. I wish I would have done more research online to know what to expect. My first infusion was fine because my sister came with me and kept me entertained. However all the others after I have gone on my own. I would say about three infusions in I finally made a bag to take and add new stuff to it all the time. I love to do all kinds of craft project and sell my projects around Christmas time. Thanks to my "Me Time" during my infusions I am pretty much stocked up for done projects by November and no longer have to stress to get enough done to fill my booth. When you go into your infusion center you should ask them where the blanket warmer cart is. I always grab three or four warm blankets before I head into my treatment room. They keep me nice and comfy through the whole three hours and they are great to warm up your arms so its easier to find a vein for the IV. Thanks again for the share.