The Truth about Crohn's Disease

Hey! I’m Destinee Fowler, 23 years old fighting a fight with a invisible disease. My story is long, but I’ll try my best to summarize it up.

My journey into this world started out just like anybody else. My mom carried me to full term, the doctor said I was a perfect baby girl when I finally arrived. But low in behold a few things would change. I like to joke with my mom and say that I was a bad baby. That joke makes sense after all. Just like any new baby the digestive tract plays a big role in the first few weeks of life. Mom brought me home from the hospital and everything was ok. Just ok though, not great but she was making it with me. She wasn’t alone she had my nana, papa, and the rest of my amazing family. Sometime in those few weeks something changed. I constantly cried, had a hard time with fromula, and was constantly becoming sick. She took me to my pediatrician (Dr. Stinnett) he had her switch my formula. I eventually was able to tolerate Soy formula, he then informed her that I had colic. She use to have to place me on her arm and run the vacuum cleaner to soothe me. She had to do baby enemas for me. I was miserable and so was she. As I continued to grow my immune system wasn’t any good. I constantly had ear infections, or had strep throat. I will not lie it was always something. Well to move this up, when I was about 13 we really noticed a change. I had not only entered woman hood, I had developed this constant pain in my lower right quadrant. From 13 to 15 I was in and out of doctors offices and the er. They acted as if I was a nut job. I would eat but not enough. I would go to the bathroom more than others. I was giving up. When I was 15 I was a freshman in high school. I was also in band, we had a trip to bowl game that I ended up missing. I ended beeing admitted to Arkansas Children’s Hospital (my home away from home). That night was a long night. After being admitted myself and family woke up to 7 doctors in my room. They believed that my ovarie in my right lower quadrant was causing the pain and they wanted to do exploratory surgery and remove it. We discussed that as a family and agreed not to go that route. I was discharged from Children’s and sent home. At that time I had missed so much school that the principal at school had allowed me to start Christmas break and exempt me from semester test. After that point I continued to deal. Deal with the pain, deal with the weightloss, deal with missing out so much, and deal with having no control over this. This was in 2009, lets jump to my senior year. From 2012 – 2013 everything turned upside down. I was managing my senior year. I had a job, car, friends, and most importantly preparing for college. I was so excited for this new adventure right in front yet so far away. March of 2013 something had happened. The pain took completely over my body. I didn’t have control anymore. I won’t forget the night in March we found the one ER doctor at White County that took the time for me. We went into the er expecting the samething like everytime before. Hearing the same opinions which was full of gas, constipation, hungry, or just wanting pain medication. This doctor was amazing, he ordered lab and a ct scan. He took the time to really look at my scan. My small intestine was so inflammed that it showed up on the scan. Commonly you should not see your intestine like that on the scan. He came in room and had asked if anybody in our family had or has Crohn’s disease. I looked at my mom not really understanding what he was asking or even saying, but she answered with a “no”. At that point we had an idea. We had a little bit of light. He discharged me with contact information for a GI specialist at Children’s. The down side of it was I had to wait til June to see her. So from March til May I graduated high school, and waited for what it felt like forever. My appointment in June finally rolled around. At this point I was weighing about 90 – 95lbs. I met the doctor on a Monday and she was 95 percent sure I have active moderate to sever Crohn’s disease. She scheduled me for that Friday for an endoscopy and colonoscopy. Those procedures may seem minor to some but to a young woman that just turned 18 and graduated I was scared. That morning of that scope I didn’t know what to expect.  I woke up from the scope to hear that I have Crohn’s disease. I was discharged and sent home with so many different types of medications. From that point on until August I was taking 23 pills a day. In August I was admitted to Children’s for almost two weeks. Right before my first semester of college was supposed to start for me. I was sick, my body hates me, and I have no control over it. The first year was extremely hard. I went from being a happy go lucky young woman to a very dark woman. I lost friends, I distanced myself from family, and felt alone. I lost myself while trying to fix myself. My team at Children’s was incredible. But eventually they had to age me out. I aged out right before I turned 21, I’m 23 now and haven’t had a steady doctor since. GI doctor’s are picky when it comes to Crohn’s disease. Its the hardest to work with and treat. Its nasty and a pain. This year has been hard on myself and family. I’ve been in the hospital twice. I’ve developed a fistula from the end of June to the end of August. Almost had surgery back in September until two surgeons said no. Then found Dr. Brain Hughes. He has hope and I hope that he can share his hope with me. Because Iam scared. Last night I was in our local ER at Unity because something wasn’t right. The pain is unbearable and it effects everybody around me. They discharged me and I went home. Tonight I’m staying at Baptist Inn because in the morning I am having a colonoscopy to hopefully find out what is going on with me. I am miserable and I am sick. I do not wish this on anybody. Most days I catch myself saying “I wish I was like a normal 20 something year old”. But after talking to Ashton and Alexis, which I might add we all three grew up together, that I’m not alone. These invisible disease’s effects people right down the road from us.

We’re trying to tell our stories and this is the beginning of it. I may not have control over my body but I will have control over my Crohn’s disease.

I’m Destinee Fowler, and a girl with guts.