Eosinophilic Esophagitis

My esophageal story.

Photos by author

“You’re taking too big of bites.”

“Just drink some water to help it go down.”

“Why did you throw up?”

My normal was here again. I shoot up in my bed. My chest feels like someone has lit a match before “tossing it down the hatch” that is my throat. I grip my chest and run to the bathroom. I stagger between the railings on the hallway banister. I look like a druggie as I push back medicine cabinet bottles and search for the Tums. I sit on the bathroom counter in just my tank top and undies, recklessly abandoning the fact I am not home alone, but back from college for the summer. I find the Tums, I grip them like a crazed animal holds a sparkly treasure. I tear into the bottle. They are relief to the feeling of my chest collapsing onto itself. But before I can open the bottle, everything goes black.

I wake up to my parents. “Tums and a glass of milk,” I demand. I fainted from the pain and after the sweet pause of unconsciousness, I am roused by the pain yet again. They comply, and I send the substances down like water to the fire. I have been through this before. Waking up. Waiting. Begging. Praying the burning would subside. But until my release, it feels like my throat, like my chest, was trying to give birth to something, like I am straight out of that scene from Alien where the monster bursts through the chest cavity. I would force it from my bosom if I could. Minutes pass. My heart thumps. It feels like I can barely breathe. And then, I sit up on the couch and slowly drift back to sleep.

“We have to take her to a doctor,” my parents say finally after years of me complaining about things getting stuck in my esophagus. I guess I didn’t realize that whenever someone else swallows, they don’t feel the slow agony of the food refusing to go down, like some vitamin pill going horizontally at every morsel of food.

I walked into the specialist’s office.

She asks: “Do you have allergies?” “Mmm lots of them” I say.

“Heartburn?” She questions. “All the time,” I say.

“How long has this been going on?” She asks. “As long as I can remember,” I say.

And she hands me a pamphlet.

“You have Eosinophilic Esophagitis, I will have to do an upper endoscopy to confirm, but I suspect that is what this is.”

I can’t stop smiling when she says this. There’s a word for it. A really big word for it too. Eosinophilic Esophagitis. I wasn’t eating too big of a bite, I wasn’t just eating wrong, and it wasn’t just heartburn.

My hell had a name. So I took to the internet. There were all these old stories about kids who had it. They were eating all their foods blended or through tubes. The article resided on a pathetic and dated website and it seemed like the problem was not really “curable.” And barely treatable. How many multisyllabic rare disorders often do have a cure though? I wanted answers. I wanted solutions. I wanted vitamins, diet, drugs, and now that my dragon of a disorder had a name, I wanted it slayed.

Photos by author

The surgery was painless. I was given prescription strength anti-acids, wheeled out to my parent’s car in wheelchair and told I could eat shortly again. Not only could I eat, but the food went straight down without pain. I was so excited that there had been some change. They said I would probably need surgery again, and I wasn’t sure how I felt about the drugs. But I didn’t think too much of it, until a few months later, when another piece of food was lodged in my throat again, like a stubborn spitball stuck in a straw.

Nothing was said about my diet at the doctor. The drugs were not explained. So I took to the internet. I always panic about long term side effects of pharmaceuticals. I always think I can solve everything with diet.

But the internet was not a friendly place for me and my condition. There were no highly sponsored websites with great resources. No really recent information. I barely found something beyond just weird photos of the inside of people’s throats and things that just said “surgical solutions.”

I could not have been the only one who often panics that this time the food would be stuck for good, unable to talk at the dinner table, redefining my faith praying to any omniscient being, if it just meant that any higher power had the answer to get the pain to stop.

I did learn a few things. Alone. Scraping my way through the internet, like my bread scraped out the hollows of my esophagus…

  1. Surgery did help, and it couldn’t cure me. I probably have to get surgery again. I am powerless against this disorder. I am also unable to “avoid” surgery. It has to happen, and the positive effects that follow, don’t last a lifetime.
  2. There is no sustainable diet for this disorder, and there also isn’t not one… I have found that gluten free, milk free, sugar free, egg free, did not work for me. Auto Immune Paleo helped me, but that might be because it cuts out a lot of porous foods like bread. Auto Immune is also hard to sustain and with all my food allergies, it is still hard to always feel “safe” on it.
  3. I cut out Tums, coffee, nightshades, onions, and spicy foods. This did help a lot actually, mostly with the heartburn less with the dysphagia.
  4. This disorder is out of my control. It doesn’t matter what I eat or don’t eat. It doesn’t matter if I made good lifestyle choices or bad that day. It doesn’t really matter what I did. My esophagus still acts up, randomly, with little to no control or warning.
  5. I am not giving up. I believe in the potential of science. I hold out hope that one day there will be a cure for food allergies. I also believe that being only in twenties, I couldn’t have possibly tried every diet. I don’t take Tums or prescription strength anti-acids, so at least that’s something. I haven’t done, read, or heard it all, and in that reality there lies a discoverable shred of hope.
Photos by Author

Since my diagnosis I have met two other people with this condition. One of whom is my aunt’s new husband. Another of which was a coworker. It was relieving to hear that someone else had it. My aunt has said, “Yeah his face gets all red and he looks like he’s dying.” My coworker and I went back and forth about the war stories of our esophagus’s, and you would think we had just found out we were both twins separated at birth or something.

It feels good just to know, I wasn’t crazy, or alone. To know that swallowing isn’t supposed to hurt this much. To know that none of it was my fault. To know that it had a name, and I could speak it aloud and conceptualize it. So if you’re reading this because you like to hear about weird/sad medical conditions, cool. But if you’re reading this because you also have eosinophilic esophagitis, welcome my friend. Dear friend, you are not alone in the ignorance of this disorder, the pain, or the sorrow of no solution. I also do not drink out of a straw and live a pretty fantastic life full of good food, and even though I don’t have a good answer for you about how to fix this, I hope just hearing that you are not alone in this, and the comfort that your symptoms are real, is enough.

P.S. I love you smoothies.

P.P.S. F*ck you dry *ss bread.

Aspiring Social Worker(Masters 2022!), I write about mental health, racism, sexism, life, and the bones I have to pick with the Mormon Church…

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