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My Secret Strength

When I was 9 years old I was diagnosed with Crohn’s disease in my small intestine. All I knew back then was that my life consisted of doctor apts, hospital visits, and the torture of medicine. How can anybody understand the severity of an illness at just 9 years old?! I know I didn’t that’s for sure. I remember being the tiniest kid in my grade simply because I wasn’t growing. I would go to school late because I refused to take my medicine. There would be times my mom and I would sit at the table all day trying everything for my medicine. I would roll a quarter heads I’ll take it tales no, fingers would be orange, even dumping my “candy” medicine down the couch. There came a point where my dr finally had enough and made me sign an agreement to take my medicine! Luckily, my friends mom came to the rescue. My parents were always very supportive of me and kept me involved in as many activities as I can. I loved dance and basketball. Before my basketball games, my friends mom would take the pills and put them between her fingers and shove it down my throat. Sounds pretty aggressive at only 9 years old but hey it worked. Till this day that’s how I take my pills.

Once I started getting older, taking my pills, I became in remission up until I was 14/15 years old. Then I got sick again and it wasn’t my intestine, it was my colon. The colon is tough because pills are already dissolved by then and it’s hard to do rectal medicine. I guess because my hormones changed, my body rejected the medicine. It was so scary because they weren’t sure if it was the medicine or god forbid cancer. That was probably one of the most scariest parts of my life walking into the hospital being tested for cancer. Seeing these poor kids with no hair wondering if that would be me. Thankfully it wasn’t.

I was on steroids which was fine but the pill didn’t work anymore. So then I would go into the hospital for a few days and get them through an iv. Fun right? I tried changing my diet, acupuncture, everything and nothing seemed to work. The acupuncturist would try and help and tell me not to eat certain food. I was dairy free, gluten free, only eating meat and veggies every single day. At this point I’m now 15/16 years old. My friends and school knew what was going on and I always had so so much support that I’m so grateful for. Even though you have support, you still get upset and depressed sometimes. It’s just normal. How can you be happy when you’re crying in pain, can’t go to school, or see your friends unless they came to you?

My dr and parents decided I needed to have an ileostomy. Me on the other hand? Completely disagreed but because I was under the age of 18 and couldn’t leave my room or bathroom I didn’t have much of a choice. I was 16 and at this point I was supposed to leave school in dec for the surgery; ended up my last day before thanksgiving break. I ended up naming my ileostomy petunia so I could talk about it in public with my family and friends. I went back to school in Jan just like everybody else. It was completely overwhelming and scary. Yes my highschool was my home with all my friends who loved and cared about me but it was so much anxiety all day. I had lost so much weight because I couldn’t keep food down but I was getting healthier. I was happy with the way I looked and I remember a girl told me I was way too skinny. Well yeah that happens when you get sick.

I was told I would only have it for 3-6 months. No big deal. Then it turned into 6 months to a year. Then at this point prom and graduation were coming up and my mom was nervous I would get bloated or be sick so I had to wait until after graduation. When I first had the surgery, I didn’t have a serious boyfriend or anything but one of my friends told me this boy wanted to talk to me as friends. That he was understanding and would help me because I was so upset at 16 years old I had an ileostomy. We talked and he was there for me. He didn’t think it was gross or weird or anything like that. It didn’t bother him at all. He helped me when I needed it most. A few months after my surgery we started dating. Again, how can somebody so young be so okay with this? Why would he want to deal with this in the first place? But he did. He didn’t care, I was still beautiful to him. We started dating that June and still are till this day. We went to prom with my ileostomy and had such a fun, sick free night. You couldn’t even see it through my dress.

My hs graduation was June 1st. My surgery was June 2nd. When I had my first surgery I had told the nurses I’ll be back to reverse it and when I woke up on June 2nd those same nurses were there to take care of me. They were so happy to see I was back for a good reason. My boyfriend came to visit me in the hospital. He knew I was all messed up because of the medicine they were giving me but he still came and was there for me. Since that time in the hospital, I have not been back. My scar is almost fully healed and just a line. I look at it every single day getting smaller and realized I actually accomplished something. And the best part was, my boyfriend was by my side. Not many people my age have luck like that. The only thing that “sucked” about not being sick was watching my weight but now I got that under control.

As of today, I am proud to say I have control over my body. Yes I have my days where it hurts and burns but you just have to keep going. There have been times where I had to go the bathroom in plastic bags in the back of the car or even while driving before work and walk in like everything is fine. At this point, I have no choice. I have Crohn’s disease. You just have to accept it and make the best. My friends and family support me and always tell me how strong I am. Because again, I was 9 years old. Word of advice. Just keep breathing and take everything day by day. You weren’t given a challenge you couldn’t handle.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • thedancingcrohnie moderator
    9 months ago

    Such a great story. I am so happy you found much success after your surgery and were able to heal. I can’t imagine being diagnosed at such a young age and having to go through surgery in high school, but you did it all gracefully. You should be so proud! Thank you for sharing!

    Always dancing,
    Elizabeth (team member)

  • Shep
    3 years ago

    Keep up the fight Secret Strength!! Always remember You have Crohn’s Disease but Crohn’s Disease does not have me!! Love you

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