By Louise Kennedy
This blog post was written prior to the COVID-19 pandemic. When attending your infusions during the pandemic, it is important that the healthcare establishment implements the highest safety standards to protect your health. The Children's Hospital of Philadelphia has confirmed their added safety measures such as: • Each room is cleaned in between patients (this has been their standard protocol) • Physical distancing with patients and staff • All staff wearing masks • All patients and families are offered masks if they do not have one
When it comes to having Inflammatory Bowel Disease (IBD), infusions (what feels like gallons of fluid sometimes) seem to become synonymous with the whole experience. For people like me who have Crohn's Disease and endure “Remicade” treatments regularly, it can sometimes be a daunting or just plain boring event. My team at Children’s Hospital of Philadelphia (CHOP) has helped me cope in many ways, particularly laughing with Dr. Ronen Stein. So, in the spirit of making something dull and dismaying more calm and even...cheerful, here are three tips to get you through infusions! 1.) Prepare It may sound weird at first, but knowing what you’re going to do when the time comes makes most situations ten times better.
One easy thing you can do is remember when you were last sick and when you last took your medicine. The nurse attending to you always asks. Another thing you can do (which is my personal favorite) is find a comfy outfit for the infusion. If you’re going to be sitting for an hour or more, you might as well be comfortable! Make it cute, stylish, sporty or crazy. Your infusion team is there to take care of you, not judge. My team at CHOP has seen me wear some funky outfits! After all, your infusion is about you and your health. And probably the hardest one - get all your ducks in a row. What I mean by this is make sure you have all of your work or homework ready and tell your boss or teachers of your upcoming infusion. You don’t want to scramble to meet a deadline or finish your math homework after a tiring infusion, do you? 2.) Speak Up Sometimes it can be weird to speak to essentially random people, but in a hospital setting, it’s perfectly normal! Cold and need a blanket? Want your I.V. in a specific arm or hand? Need to go to the bathroom after your infusion has already started? Want some crackers? Juice? Soda? Need help with anything or have any questions at all? Just ask! The nurses and receptionists at your facility (and CHOP!) are trained to help you, so don’t be afraid to reach out to them if you need assistance. 3.) Relax Whether it’s taking a nap or kicking off your shoes, do whatever you need to make your infusion stress-free and comfortable. It works wonders for your health (and sanity) after it is over. Some great ways to pass the time are reading, checking emails, doing homework, playing games or watching TV! Talking to friends or family members who don’t know about IBD not only passes the time, but also spreads awareness. You might even learn someone you know also has IBD! Even with all this information, remember infusions are created to better your internal health. You might as well enjoy it even if it can be tiring, awkward or a little unpleasant at times. It’s always good to keep in the back of your mind that you’re doing great! Keep at it and your overall well-being will improve - maybe even better than it ever was before! About Louise Kennedy Louise Kennedy is a sophomore at Absegami high school. She is an Ambassador for the 2020 VIRTUAL Walk for Hope, the signature event for the Center for Pediatric IBD at Children’s Hospital of Philadelphia. She advocates for IBD research and awareness and hopes to go into the field of homeland security to help those who cannot help themselves while bettering the country.
This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your condition.