Sydney Jones

Hello everyone! I’m back! I’m creating our team homepage again where I am going to be writing and sharing my experiences with living with Crohn’s Disease.

I was diagnosed at the age of 3 by the help of my pediatrician, in September 2010. Being this young, I do not remember much other than having a few tummy aches here and there. My parents were the ones who held my hand the whole time. They have stood by me and fought super hard to keep my disease at bay. My grandmother, Janet, had Crohn’s, so my mom was familiar with the discomfort and pain I dealt with daily.

At just 4 years old, I was given an NG tube, which was pretty scary considering I had to get almost four feet of yellow tubing in my nose. I can just imagine how chaotic the first few years of putting in the tube were. I know my parents had to fight to keep me down at times because I hated Sunday nights, knowing the tube was going to have to be replaced. However, despite being anxious about tube feeds, almost right away I felt better and had more energy.

Another milestone I hit was being able to insert the NG tube myself at just 12 years old. After 10 years of getting treatment from the tube, I was put on a special diet consisting of strict rules. I saw amazing test results, but ended up in the hospital twice after due to losing too much weight. I recovered quickly and was put on Humira. I taught myself how to do the injections. Sadly, it stopped working after a year.

Now I am on a Pfizer product called Inflectra.  I get infusions at an infusion center every 5 weeks. Getting poked with needles does not bother me much anymore, but there will always be moments when I find it a little uncomfortable.

Crohn’s disease is currently not curable, but I hope one day it is so nobody else has to suffer with this disease. I am so lucky to be able to have amazing doctors and a big support system. I believe as long as we keep raising money and showing up for events like the CHOP walk, a cure will be found. Any money donated goes directly towards the foundation. Every dollar counts so it is not necessary for large donations. All the support means the world to patients like us. Like my mom has written years before… “Together, we WILL find a cure!!!”

Sydney Jones (age 17;  senior; will be studying nursing at Clemson University Fall 2024)