I'm Lexi - a rising high school senior. In December 2019, I was having severe nausea, vomiting, and abdominal pain. The doctor at Urgent Care thought my gallbladder was the cause of my pain and suggested I go to the emergency room immediately to have it removed. At the ER, after many tests, they determined it was not my gallbladder but could not figure out the cause of my pain. I was referred to a pediatric gastroenterologist.

Based on my symptoms, stool sample, and blood work, the pediatric gastroenterologist recommended a colonoscopy and endoscopy. My results showed multiple areas of inflammation including terminal ileitis, which is commonly associated with Crohn’s disease. I was sent for an MRI to confirm it was Crohn’s, but the scan came back normal. A follow-up stool sample still showed inflammation, so my results are inconclusive. I’ve been on Pentasa since the middle of March and have an appointment with a Crohn’s specialist in New York City soon, and I’m really hoping to get an official diagnosis.

One interesting thing most people don't know about me is that I got stung by a scorpion last year on vacation in Las Vegas. My parents and I go on vacation to Las Vegas every year. On our last day of vacation this past summer, we had planned to go see a country music concert. I was getting ready for the concert in my room when all of a sudden, I felt something crawling on my thumb. I tried flicking it off (at the time, I didn’t know what it was) but it stuck on until I flicked again after I felt a prick. I saw it crawl away. When my mind cleared, I realized I had been stung by a scorpion. The pain set in and I started screaming. My parents and I had no clue what to do for a scorpion sting. My dad ran to catch the scorpion so we could bring it to the hospital with us. We bolted to the hospital and good news… the scorpion was not poisonous. We missed the concert, but now my entire family knows what to do if anyone we know gets stung by a scorpion!

While I’ve been waiting on an official diagnosis, my family and I have decided to try a modified Specific Carbohydrate Diet (modified SCD) to see if it helps any of my symptoms. My biggest struggle right now is adjusting to the dietary restrictions. It has been difficult to participate in activities I used to love to be a part of. I have been playing softball since I was eight and have struggled finding energy or pain-free days to practice or play my best. I put a lot of time, effort, and sacrifice into this sport, so it’s been tough to realize I am not able to perform at the level I’m used to. Softball is my happy place that I go to when I feel sad, stressed, you name it. It is difficult to think that the sport may not be my outlet any longer.

I try and overcome this struggle by reminding myself that it is for the betterment of myself that I stick to the diet and understand my diagnosis. I remind myself that although I can't play the way I used to, I can still enjoy the sport. I do not push beyond my limits and understand the importance of rest, especially now. I learned that I am resilient and will always try to find the positive no matter the situation. My parents, family, and friends are my biggest support system and always encourage me to try new things or allow me to talk through anything that comes up with this disease.

I wanted to join the PAC to share my experiences with as many people as possible. I want to show people how important it is to have a positive attitude to get through the toughest of times. You have to spend time with yourself 24/7, so I think building a strong support center within yourself is almost more important than finding it in others. No one understands your pain more than you. By recognizing that you have the ability to help yourself and be positive, I think you can shift your outlook on the disease for the better. My positive personality and mindset have helped me through some of the toughest times I have ever had to experience. I want to share my experience and ways of coping with others to hopefully provide those who need it most with help and support.


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