When I was 16 in High School, I was eating at Wendy’s salad bar and choked on a potato and had to have the Heimlich Maneuver to dislodge it. Thanks to my best friend I was ok, but that was the beginning of my life-long challenge to eat, thanks to what is now known as Eosinophilic Esophagitis (or EoE).
By the time I was 22 years old, it was bad enough that I had to have an EGD (Esophagogastroduodenoscopy) including dilation of my esophagus because it was too difficult to eat without my throat closing on me. Ever since then (for the last 30 years) I’ve had that same EDG / dilatation done about every 2-3 years to “stretch” my esophagus so that I can eat.
Back then, my doctor asked my mom if I had gotten into any poison as a child that would have “burned my esophagus” in some way to make it have such a long stricture and so much scar tissue. The doctors were perplexed and didn’t know what to do other than stretch it so that I could eat. In those days, dilating the esophagus was almost barbaric. I was half awake during the procedure as they forced a tapered tube down my throat to stretch it. My whole body convulsed and fought it and I still remember being awake and in very much pain.
Thankfully they’ve gotten so much better at it over the years. I explain all about EDG’s in this post. I’ve had at least 20 of them done over the years and explain them in detail.
EDG’s have kept me going, because I could eat pretty normally after the EDG / dilatation is performed (for me at least, even though I’ve always been the slowest eater in the room). Since I could eat, I moved forward in my life and ate whatever I wanted (that I didn’t have an obvious allergic reaction to). I figured was ok because I didn’t “notice” a reaction. Obviously it wasn’t ok because the eosinophils just continued to accumulate and cause problems.
Many people that suffer with EoE or other other conditions that cause trouble swallowing have a stricture in their esophagus BELOW the point where it would cut off their breathing if something got stuck. This “food impaction” affects many where food will not go down and hey have to go to the hospital, but they can breathe when food gets stuck because the trouble is far enough down their esophagus.
Unfortunately, my esophagus is very tight and closed up high, toward the top. So it’s a struggle to get food down from the very beginning, and if something doesn’t go down I can’t breathe.
How bad does EoE get?
Well, at multiple times I’ve been basically on a liquid diet because it was too difficult to swallow food, and what I did try to eat would cause more of a closing because of reaction to things I’m allergic to (which are more than I could figure out). One time I choked (couldn’t breathe) on 1/4 of a pill that was a small pill to begin with! Hard to comprehend. Needless to say, I haven’t even tried to swallow ANY kind of pill in many years. They have to be crushed.
So my life went, assuming my only option was to get “stretched” every time it got bad enough. Until a few years ago, when it started to get worse. I got stretched again, but it didn’t last very long. I noticed I was having issues again after only a few months. I pushed through but by the time a year rolled around I had to have it done again. THEN, I was having major problems swallowing after only a couple months, to the point where it was worse than ever. I knew I must be doing something wrong or ingesting something making it worse.
I decided it was time to get drastic. I couldn’t live like that, so I started paying attention to EVERYTHING I was eating. I adopted the 6-food elimination diet to see if that helped, but when you’re allergic to so many things, they can only test you for a limited number. So you have to try to figure a lot of it out on your own.
One thing I figured out is that oranges were high on my allergy list, and I had been drinking Diet Mountain Dew for years. I never knew, but when I started paying attention I saw that orange juice concentrate was the #2 ingredient (behind carbonated water) in Diet Mountain Dew! Strike that off the diet list! I also found other things that showed up on my allergy list that I was consuming fairly frequently.
Today, I’m in the beginning of changing my diet drastically. I’ve determined a list of the foods I’m allergic to, and I’m staying away from all of them. I’m also trying to get tested for foods I have NOT been tested for, but that I know I want to eat. The problem with EoE is that you could be eating/drinking things you’re allergic to but you can’t tell. The problem inside of your esophagus is created over time from consistently consuming allergens, all while you have no idea it’s happening.
Read about my eating experiences in this blog post titled “How to eat when you’re allergic to almost everything”. Elimination diets are my only real chance of improving my situation currently. I’ve tried the steroids and other things and they didn’t help me any. In fact, I felt they made it worse (unfortunately I wasn’t one of the people who found relief by them). Read about my steroid experiences here.
So this blog will be the next experiences I have in trying to figure out what helps, as well as discussing the latest medical advances and thoughts on how to improve the plight of those with EoE.
Stay tuned….(and sign up for notifications when new things come out!).