09/09/2023
After battling symptoms of EoE for nearly two decades, its finally happening. I am finally getting to a point where I am able to move forward. I am still on a partial elimination diet. I have definitely found triggers. I will be posting my second injection next week. The first one I want to do in private.
From that point I will start to post various videos on my journey. In hopes that others can be more educated on EoE. Advocating for yourself can be extremely frustrating when doctor's dont see to take your symptoms seriously. "Take smaller bites" and "chew better" are just a couple things I have heard to the point I literally stopped going to the doctor. I got sick of hearing the same things over and over. Obviously something was going on. At times I couldnt even swallow WATER! But, every impaction I was able to get cleared on my own. Every "tightening" of my throat I was able to still breathe. It wasnt considered serious. I would make appointments with the specific purpose to get a referral to a GI and I would get shoved off. It took me getting food stuck at 3AM at work and going to the ED for things to finally move forward.
But that wasnt just it. Once the impaction was removed surgically and 17 biopsies taken, it was INCONCLUSIVE!!!! So, I was put on a PPI (Pantoprazole) and told to take twice a day. Come back in a few weeks for another scope.
Scope day came and went. 7 biopsies. GI told me the anesthesiologist rushed him due to impaction. Ill go into details about biopsy in a video at some point. But he said I had a WHOLE LOT of stuff going on that was textbook EoE.
Basically, Eosinophils were thriving in my esophagus. They cause damage over the years. So, the two decades of trying to get these symptoms figured out actually made me worse! Argh! But he had me cut dairy then dairy and gluten. Another appointment and he had me do a 6 food elimination diet. Saw a nutritionist, insurance covered it for EoE. Then had to wait 10weeks for this most recent scope.
Now I officially have my gold standard diagnosis and my medication came yesterday!
Today will be injection #1. Again, in private because I am mostly nervous.
My advice for now is keep advocating for yourself. Keep doctor shopping. Keep your head up. It is beyond frustrating but just keep doing it.
**Pictured: Dupixent 300mg pen. This is an auto injector. It needs to be refrigerated until ready for use. Then for the 300mg pen, it is supposed to sit until it reaches room temp.
