I’m sixteen; I should be engaged in living the teenage life, right? Not in my case. My situation is very rare according to my doctors. I am a girl living with eosinophilic gastroenteritis. I may never grow out of this disease. This is my story, and here is where it begins.
When I was little, my parents tell me I wouldn’t eat much. They thought I just wasn’t hungry, but what they didn’t know, was that it actually hurt to eat. Eating food is an essential to survive. If it is so vital, why does it feel like someone is stabbing me with a knife in the stomach after I eat? This is a question I ask myself every day. When I was 11, I finally got the attention of my parents.
One night, we were driving down the highway and I looked over to see a man in all black with one leg over the side of the bridge. To this day I still wonder if I ever could have done anything to help him. A little later, we went to the store to buy some groceries and I was overcome with stomach pain. I thought it might have been from being scared of seeing the man about to commit suicide, but that thought was short lived when all of a sudden I was doubled over in the middle of the aisle. The next day my mom set up a doctor appointment to figure out what was going on since I had complained so many times about this “stomach pain”. I was terrified with the thoughts of “What if they don’t find anything?” “What if I am overreacting?” Then, the day had come.
When I arrived at the doctor’s office, we went through the normal routine of checking weight, temperature, and height. As I walked into the room, room number two, I was explaining all of my symptoms to the nurse. She got a very odd look upon her face. I was a scrawny girl telling the nurse my stomach hurt when I ate. She probably had the thought of “anorexia” racing through her mind. My doctor walked in, his once brown hair starting to gray and his tall, lengthy body becoming wizened. He talked to me about all of my symptoms for quite some time and then he said, “I have this medicine you can try for two weeks, but if it doesn’t work, I’m going to send you to a gastroenterologist at Children’s Mercy.”
I tried the large, white and blue pills for two weeks like he had said. I went back in to follow up, and I was still having these foolish pains. He gave my mom the number to the gastroenterologist and we were on our way. There wasn’t anything else he could do to help me. I remember getting in the car and crying because I thought if my doctor, the one who had helped my mom with her disease, couldn’t tell what was wrong with me, there must be something really wrong.
About a week later, I had an appointment with Dr. Hodge at Children’s Mercy. When I got there I told him about my complications and he suggested having an upper endoscopy done to see inside my body. I had no idea what this “endoscopy” was, and I didn’t want someone taking samples of my stomach, intestines, and throat if it didn’t need to be done. After a lot of convincing, we scheduled the surgery for the day after school got out in May 2007.
Most kids were excited because summer was here, but not me. I knew that tomorrow I had a big day ahead of me and I was petrified. When I got to the hospital the next day, I was taken back into a very small, quaint room where I had my IVs put in. I was horrified of needles and I had to have one in me for three hours? I soon got over that because I was pricked and prodded every other week for some more testing. I was wheeled into the room I would be having my surgery in and I met all of the doctors that would be operating on me while I was asleep. The anesthesiologist said, “Brittny, it’s that time. We’re going to stick this white stuff in your tube and you’ll be out. Is that ok?” I had no choice. I had to do this if I wanted the pain to be over, I thought.
I wakened from surgery and couldn’t see anything at all. I had no control over my body and I started having a panic attack. The nurses had to go get my mom from the waiting room because I was so distraught. When my mom walked in, all I could hear was her voice. She asked me if I was doing alright and if I needed anything. By this time I was starting to get some of my eyesight back, but I was still out of control. I was wheeled out in a wheelchair to our car. All the way home, I bawled. I didn’t even know why I was crying anymore, but the tears kept coming.
I woke up on the couch with a stuffed animal and a “get well soon” balloon and card. I honestly could have cared less because two minutes later, I was right back asleep. I didn’t do much that day, but I remember relying on my mom and my little sister to help me go to the bathroom. What sixth grader wants their mom and little sister helping them out? Not this one.
My mom is five foot one, give or take. She has long, dark brown hair, and tan skin. She is my life. Without her, I don’t know where I would be today. She was diagnosed with fibromyalgia when I was in younger. This means she can’t do much with us until she takes her medicine she needs and sometimes, even then, she can’t get around very well. She is my inspiration for pushing through all of the pain this disease has brought me. She is the strongest woman I know and that will never change.
A couple days later I was on my way to Texas to visit my dad and his family for the summer. About two days into my stay, my mom called my cell phone. She said we had gotten the test results back and she needed me to listen carefully and sit down for a while. The only words I remember my mom saying to me in a calm tone were, “Britt, you have a thing called eosinophilic gastroenteritis. You’re allergic to food.” I laughed and said “Yeah right, Mom. What did the doctor really say?” and then I realized that my mom was being serious. I don’t think she knew how much the words she had just spoken impacted my life. I’m allergic to food. Brittny Cantrell, the girl allergic to food. That is all I could think of.
The definition of eosinophilic gastroenteritis is “a rare disease in children and adults characterized by food-related reactions, infiltration of certain white blood cells (eosinophils) in the GI tract, and an increase in the number of eosinophils in the blood”. This means that my body attacks food because it thinks that its poison, which causes extreme pain in the abdomen. The normal amount of eosinophils is around 20,000 and under, but I have 70,000. I have more three times the amount of these white blood cells than I need. Every six months I have to get that same surgery to look at my progression or regression.
Throughout the summer I had to do the “eat and eliminate” diet. I had to try foods and whatever hurt my stomach, well guess what? I couldn’t eat it anymore. You don’t realize how great you have it when you can eat whatever you want. I can’t have blueberries, chocolate, tomatoes, apples, or too much milk. There’s still so much more to discover, but I try to keep my diet very minimal. Blueberry anything was my life. I LOVED blueberries, but now, even if I have artificial blueberries, I can’t get out of bed for at least two days. Just think of eating your favorite food. Maybe its ice cream, or pizza, or blueberry pancakes. Now imagine your life without that food. The only way to describe it is disheartening.
When I was in seventh grade, I would have passing out spells quite frequently. One time, it got very serious and my mom made an appointment with the endocrinologist. I found out, after four hours of testing, that I was also hypoglycemic. First, I was diagnosed with this rare disease, eos for short, and now I had to check my blood sugar before and after I ate to make sure it wasn’t too low. My diet was already restricted because I was allergic to food, but now I couldn’t have a lot of carbs or sugar just to make sure I would stay alive. I was also taking around twelve pills A DAY to try to minimize the stomach pain I had.
Finally last year, I got tired of putting medicines in my body that didn’t seem to help at all. I actually felt worse after taking them. Being the stubborn teenager I am, I decided to stop taking them altogether. I was in for a rude awakening as you could presume. This past summer, I was at a CSI camp in Texas and I got sick after eating. I didn’t think anything of it until I realized I had gotten sick three times in a row. I told my mom and she called the doctor and my mom had called back within ten minutes. She asked me one simple question, “Was there any brown clumps in it?” After I answered with a yes, she told me to pack a bag and tell my dad and stepmom I needed to go to the hospital as soon as I could. I asked her why because I knew that I was ok. I didn’t feel bad. My mom quickly responded with “Because you’re puking up dried blood.” With those words, I looked at my stepmom and started crying. I had gone so long without any pain or problems. We had all thought I was in remission, but then this happened.
We arrived at the emergency room and the doctors didn’t know anything about my disease. Imagine going to a foreign country and speaking English and having the entire population look at you like you’re senseless. That is what it felt like. These doctors had no idea what they were supposed to do with me and it scared me to death. My mom was worried because she was four hundred miles away and I wasn’t with her. That was one of the most petrifying moments in my life. I had finally realized that my disease was something to be taken seriously and I could not play around with it.
I came home two weeks later and went back to my doctor at Children’s Mercy. She told me I needed to take at least three of my medicines, which meant six pills. I took them all for about two days, and then I got worn-out again and stopped taking them. To this day, I still only take my medicine when my stomach hurts. I know there are serious consequences with not taking my medicine, but imagine taking pills for the rest of your life. It’s not a pleasant thought and it’s even worse to be living it.
The whole experience of having people call me “anorexic” or accuse me of “faking” has only made me a stronger and better person. I refuse to let my disease define me. Many of my friends don’t even know I have something wrong with me or they forget because I hide it. I put forth my best effort and I soar through school, while many others with the same disease are stuck on feeding tubes or in hospitals because they can’t eat.
I am on the waiting list for Cincinnati Children’s Hospital which specializes in my disease. It’s a lot of money to go there, but it’ll be a good investment in the long run. The doctors will run tests on me and tell me what I absolutely cannot have and what I should stay away from and what is perfectly okay for me to eat.
I know God gave me this disease because he wanted to see how strong I was. Before I was just the tall, skinny girl with brown hair and now I’m the tall, skinny, beautiful girl with a rare disease that makes me push my limits. I will always have this disease and some days I’m just not strong enough to say that to myself. Sometimes it feels like the disease is laughing in my face just to see what I’ll do, but I don’t let it get to me. Sometimes just the thought of being different is too much for me to handle. But today, I am facing my disease head on. I will fight it until there is a cure. I and the other three hundred people that have this rare disease will fight together in the long journey of finding a cure.