Living with EoE

AUTHOR’S NOTE: THIS POST IS VERY LONG, BUT I HOPE YOU WILL READ IT ALL. IT DESCRIBES MY JOURNEY WITH EOE, AND BRINGS AWARENESS TO THE NEW DISEASE. HOWEVER, MOST OF IT IS VERY HEAVY STUFF THAT IS REALLY SAD. I DON’T MEAN TO MAKE SUCH A PESSIMISTIC POST, BUT JUST MAKE SURE AND READ TO THE END. THIS IS NOT MEANT TO SADDEN YOU, BUT SHOW YOU HOW TO LIVE THROUGH ANY OF LIFE’S PROBLEMS.

For as along as I can remember, meals would often go interrupted by food getting stuck in my throat. One minute I would be laughing and enjoying some orange chicken, but the next I would have to suddenly get up from the table, rush to the bathroom, and try to make myself vomit over a toilet. In hindsight, I don’t understand why I thought nothing was wrong, but when you live with something your whole life, you assume it must be normal. I told myself I was just eating food too fast and taking too big of bites so they would get stuck in my throat. It wasn’t until I casually mentioned it to my dad that I realized it could be a problem. I described to him that I had gotten food stuck in my throat again, to which he replied, “Ya, that’s not normal.” Thus began several months of tests, doctors appointments, and severe medical anxiety. None of the doctors we visited could accurately tell us what was wrong with me, and even when they DID figure it out, they couldn’t tell me how to treat it.

About two years ago, I was diagnosed with Eosinophilic Esophagitis (Ya, say that ten times fast) or EoE. I had heard of this once before from a family at my church. Their nine-year-old boy, Josiah, had this disease that caused him to be unable to eat dairy, wheat, soy, egg, legumes, nuts, shellfish, and a bunch of other stuff. In fact, their entire family had to MOVE out here to Colorado to get the treatment required from Children’s Hospital. None of this sounded like anything I wanted, so when they diagnosed me with EoE, I was in denial. Surely it was ANYTHING else. Unfortunately, it wasn’t.

So what does this diagnosis mean?

Well, EoE is a fairly new and misunderstood disease. Basically, it means that there is SOME food out there that makes the cells in my esophagus react and swell, causing scarring in my throat. Over time, that scarring builds up so I can’t swallow anymore. There is no known cure, but there is an inhaled steroid that will temporarily cover the symptoms. My options were:

A) Take that steroid for the rest of my life, but be free to eat whatever. The only downside is I would never know what was REALLY causing my problems.

B) Begin an elimination diet to find out what is causing the problem, and take that food out of my diet for the rest of my life.

Obviously, neither of these sounded terribly exciting, but I opted for the elimination diet so that I could figure out what the problem was before I moved out to college. If you don’t know what an elimination diet is, let me explain. First, the doctors take out the top six allergens from my diet, meaning I can’t eat dairy, wheat, egg, soy, nuts, or shellfish. So I go about three months without any of that, then I go in for an endoscopy, aka scope (which I will explain in the next paragraph). If everything looks good from the scope, they add one allergen back in to test it out. So first they might add wheat back in. Then I go three months without the other allergens, but I am free to eat wheat. Three months later, I go back in for another scope, where they see if everything looks good, or if it is scarred. If it is good, we know wheat isn’t the problem, so I can keep it in my diet. Then we add another thing back in. If during one of the scopes the doctors find that the scarring has returned, they know that food is causing the problem, so I have to take it out for the rest of my life.

If that doesn’t sound fun enough, wait until you hear about scopes. There are two ways to do these procedures.

  1. You have to go under anesthesia while the doctors stick a small tube with a camera on the end down your nose into your throat. While the tube is inside, they pull small pieces off of your esophagus to look at under a microscope. Then, they pull it out and wait for you to wake up. The doctor will take the samples for testing, and that is how they decide if there is scarring or not.
  2. You do the exact same process, except you are awake for all of it. No anesthesia.

There is only one doctor in the entire United States of America who does the scopes on a conscious person. I was lucky enough to live in Colorado, where he works, so I didn’t have to move. I chose to do the scopes while awake because it costs SIGNIFICANTLY less, and takes less time. After months of crippling medical anxiety, I was finally able to force myself into doing this so I could actually enjoy eating again. So, I have been having scopes every three months for the last two years. It should have been much shorter, but there were other complications I won’t go into right now for the sake of your boredom.

Unforeseen Consequences

As you may imagine, this kind of elimination diet is difficult to live  with. Every time I explain it to someone they usually reply with a shocked, “So what do you eat???” Well, for the first year, I hardly ate anything. All of my favorite foods were taken away from me, eating wasn’t enjoyable, and I hated having to sit through lunch periods where people would eat pizza right in front of me while I glared at my vegan, cardboard-tasting piece of bread with ham on it.

Because of this, I quickly became anemic (meaning I had a severe iron deficiency). A large symptom of anemia is being constantly cold, so I would often borrow my guy-friend’s jacket. Since high school is full of teenagers who are slow to listen and quick to judge, everyone assumed him and I must be dating, and I got constantly teased for wearing the jacket. How could I expect them to know it was actually because I was constantly sick?

My peers also shrugged my situation off with a simple, “oh, that sucks” or a careless, “Hey does that mean I can have your doughnut?”I became angry and tired. Every mealtime ended with me crying because I couldn’t eat any of the things I wanted to, but nobody could possibly understand because they never had to live with this before. I spiraled into self-pity and sadness.

Things finally start to get better

Remember Josiah, the nine-year-old from church? Because of him, I was able to crawl out of my pit. The kid was constantly happy, and skipping around. He would gladly give up his cookie in Sunday school to a friend because he knew they would enjoy it. When I looked at Josiah, I became embarrassed. Here he was enjoying life, not letting this get in the way, while I moped around waiting for people to feel sorry for me.

I quickly realized I was wasting my life away. EoE only affected one element of my life: food. I was still generally healthy. I could still walk, run, jump, and sing. My frequent visits to the hospital were much better than having to live there like so many other kids. Heck, even with all my food allergies, I could still enjoy God’s greatest gift to the world: Slurpees. Sure, there are still hard days where I wish I could just eat some stupid ice cream, but overall, my life was, and is, GREAT.

So here is what I challenge you to do: next time life throws you something unexpected, don’t let it knock you down. Count your blessings and learn to love life again.

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11 Comments Add yours

  1. Slurpees!! I agree those are delicious!

    Liked by 2 people

    1. orrkid123 says:

      Right? My true saving grace ^.^

      Liked by 2 people

      1. I thought life would surely have no meaning without dairy (I loved and ate tons of dairy before!)…luckily I was wrong;) you have a great attitude. It is hard sometimes for sure:) AMAZING you did a scope conscious, I tried and wasn’t able to, so awesome!

        Liked by 2 people

  2. Wow you’re story is truly inspiring, orrkid. It’s incredible the ways how you’ve found to find the good in each situation.
    I also just feel compelled to say thank you. I’m sure it was a lengthy, possibly exhausting process writing this all down in a blog and then being willing to share the hurt behind your situation. What is beautiful is that even with this hurt, you have decided to no longer let this physical obstacle be an obstacle, but rather an opportunity. An opportunity to learn endurance and patience. You’ve become and are still becoming an amazing person and I am constantly impressed how each and every day you find better ways to look on the bright side of things.
    -Eugeniussongbird

    Liked by 2 people

    1. orrkid123 says:

      Thank you! That’s very encouraging because I do try really hard to stay positive so it is great to hear back from someone that I have succeeded in doing so.

      Like

  3. Reading your story has made me have a change of heart. I always wondered why you wouldn’t eat things at lunch and just assumed you were not hungry or didn’t feel good. I know others with food disorders where they are basically allergic to “everything under the sun” but they still live a happy healthy life just like you do. Every time I see you in school, you are smiling and happy and joyful so keep it up. You are an inspiration and an encouragement to others. #atleastyouhaveslurpees

    Liked by 1 person

    1. orrkid123 says:

      Thank you! That is so sweet and just lifted my mood through the roof. You are so sweet 🙂

      Like

      1. You are welcome and glad to hear it, thank you

        Like

  4. Thank you for sharing this! My son has EOE, so while I don’t physically experience it myself, I understand the struggle. In fact, that’s why I started my own food blog (foodallergydad.wordpress.com), so I could try to help people understand. I’m so glad to see teenager speaking out with such a positive message.

    Liked by 1 person

    1. orrkid123 says:

      Ya! This has been encouraging to me as well as I realize I’m NOT the only one with EoE. I have loved seeing an entire community of people with it sharing recipe ideas and such. Thanks for commenting!

      Like

      1. If you have any ideas (recipes, strategies, etc) that you would be willing to share, I’d love to hear them. I will happily link back to you and credit you.

        Liked by 1 person

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