8/10/2020 0 Comments Ellie, Crohn's DiseaseEllie shares her story on instagram @brokenbellyellie "Hello! My name is Ellie, I am 19 years old and have been diagnosed with Crohn's Disease for 12 years! As you all know, living with a chronic illness is long, complicated, and almost impossible to fit in short, but I'm going to try my best! Crohn's is something that runs heavily in my family! So, when I started showing symptoms, it was never a huge surprise! However, the way it presented was a little strange. Instead of the normal IBD symptoms we all know too well, I just didn't grow. I stayed super tiny & that's when we decided it would be best to run some basic testing. By the end of the week, I had an official Crohn's Disease diagnosis & technically speaking that's where my journey started! From about 2008-20012 my story was honestly quite boring, which i'm thankful for! It was just a lot of trial & error until I landed on Remicade. I would get an infusion about every 6 weeks, a few days before each, I would get a bit fatigued and worn out but I was back to normal the day after! It was the dream treatment for me! Fast forward to 2015, we went in for my Remicade infusion, as usual, got hooked up, and within 15 minutes I was in full blown anaphylaxis. I don't remember a whole lot of that day because I was knocked out from epi & Benadryl (maybe that's a good thing). We hoped it was a 'bad batch' of Remicade so 3 weeks later we decided to try it one more time, but the same thing happened again & that's where I say my journey really starts! About a year later, my body started to slowly deteriorate. Looking back, it was so slowly we didn't notice I was becoming a shell of who I once was. I was losing weight, my body hurt, I couldn't stay awake and I wasn't able to do all the things I thought made me, me. Then out of the blue, I got a kidney stone, and it truly saved my life! It brought light to the issues I was having, and it landed me in the ER a few times. When the pain didn't go away, even after surgery to remove it, it was clear there was something else going on. Turns out, I was in the middle of a massive Crohn's flare! The next two years lead to over 250 days in the hospital, 30 surgeries, 100s of procedures, many IVs, 3 PICC lines, 4 epidurals, and ileostomy named Regina (from mean girls--because she was very high-maintenance), a wound vac, a g-tube button named Henry, a 13-inch incision, multiple blood transfusions, TPN by the gallon, too many ER visits to count, and much more. I'm thankful for every bit of it because I now know what makes me, me is strength! Right now, is my favorite part of my story! I just graduated high school as a super-senior with my best friends, and this month I start college to become a nurse one day! I have a wonderful family by my side as I'm learning to find the confidence to live with a 'not so pretty' disease. I'm so incredibly happy & fairly healthy (knock on wood)! I have always wondered what it would be like to share my story but, to be completely honest, I was nervous!! Plus, I had no idea where to start, but with a little bit of help, here I am-- spoons in hand, I'm ready to start a new journey & I would love for you to be a part of it! Xoxo, brokenbellyellie"
0 Comments
Leave a Reply. |
Here I will post stories from fellow IBD warriors. If you would like to be featured, send me a message here or through the contact on the about me page. Feel free to message me on instagram as well @bowelbee
|