The story of Sarah
Almost every time I ate I felt extreme discomfort when it came time to swallow. Food would lodge itself in awkward places as it made its journey down my throat. I needed to always have a glass of water, preferably a can of sprite, nearby to guzzle down at some point while having a snack or a meal. Hours later my throat would feel even more swollen. I would cough as if invisible hands were gripping my neck. Eventually, I became so afraid to eat anything. I’ve battled this for 10 years. For 9 years I didn’t have a name for the pain, the suffering, or the anguish. I was told I had GERD, then I was told it was a specific kind of acid reflux called LPR, then I was told I had acute anxiety and depression. Nothing helped. Doctors treated me like a liar. They alluded to the idea that maybe I just wanted to be sick. Seriously, who wants to be sick?
In January 2017 while googling my worsening symptoms I discovered a disorder called Eosinophilic Esophagitis. The symptoms described what I was experiencing perfectly. Most people in my life and my doctors still didn’t believe this could be it. I pleaded with a gastroenterologist to give me an endoscopy with biopsies. She said she would to give me peace of mind. Low and behold on April 18, 2017, the world learned I wasn’t crying wolf. The first words out of her mouth were, “I don’t know how you knew you had this, but you have Eosinophilic Esophagitis.”
I wept out of relief. I wept out of fear. I wept because finally I had a name. After a decade of being tortured by this condition, I knew its name.
Since last April, I have tried a course of Flovent, which my body rejected shortly into treatment. Then, I went the dietary route. I cut out all top 8 allergens. After a month of no real relief, I also cut out a number of other things such as corn. I started to feel like a human again. Although, having corn as an EoE trigger is awful. It is literally in everything from medicines to toothpaste to milk and its alternatives to gluten free products. It’s in almost everything processed, which means no eating out and a very hard normal to adapt to over time.
I have still had bad attacks being on this diet and have lost over 65 pounds due to my limited diet, so my doctor and I have decided to try another medicine: the Budesonide slurry.
It’s a long road ahead, which is daunting even on good days. Most people don’t understand what I’m going through and find it difficult to relate. Not being able to eat the same foods as my husband, enjoy cookies during the holidays, and try new exotic dishes on vacation may sound like trivial wishes, but do without them and see how quickly you fall into depression and despair. This is especially the case when you do everything possible to be well, eating practically nothing, and still find yourself in an EoE episode due to intense stress.
While EoE is a cruel illness, I won’t let it stop me from experiencing life. I pray a cure arrives one day, but until that day I can’t stop living.