A large part of reactivating this was to share my Eosinophilic Esophagitis (EOE) story. Everyone is an expert with the advent of the internet of course, but I've been reading any proper studies and reports I can find about EOE since it started affecting my life so much. Because of the pain I struggle with, I believe my EOE to be caused in part by acid infiltration in the esophagus. There are studies to support this so it's more than just a hunch. I have been largely avoiding foods that I think are triggers for my EOE, but even on a strict elimination diet the pain persisted, and seemed to be caused by 'classic' gerd foods, and foods with a low chance of being allergenic to me.
It also happens that a friend and customer at the shop is a surgeon who does a procedure with a device called Linx which I had found as a solution to reflux that isn't controlled well by drugs or diet (potentially me). It took some time, switching insurance for 2020, but I've undergone a series of tests to vet me for this procedure.
The first was esophageal mamnometry, a copper snake that is fed down your nose and past your epiglottis into your stomach, then one swallows gulps of water and the snake senses the peristalsis to give a read on your overall muscular contractions. This can find many things but in me wasn't super conclusive, but not bad data either. The next was a test for reflux. There are two ways to do this test as I understand. There is a snake type probe that also goes through the nose and into the stomach, it's much smaller in diameter than the mamnometry probe, but stays in for 24 hours. I tried this but couldn't tolerate it well. The second method is a little probe called Bravo. It's stuck onto the esophagus and wirelessly speaks to a receiver unit kept on your person. This was a great solution, especially as I really needed to get another endoscopy (EGD) to see what things looked like in there and test the amount of eosinophils in my lower esophagus. Last time it was checked back in 2018 was also when my esophagus was dilated and the count was more than 100 per field (pretty high). Normal is less than 10 and really closer to zero than 10. I had been taking some compounded oral Budesonide which is one of the proven ways to lower counts, but was still having pain.
As I write this I still have the Bravo device in (it falls off after a few days) and tomorrow I will return the transmitter so data can be retrieved. I am also waiting for the biopsies to come back with eos counts. If the counts are still high this doesn't necessarily mean that I am not a candidate for the Linx, but if the counts are low it suggests that something other than EOE is causing my pain, which is my preference to be more sure that the Linx will help. That, and reflux-y data from the Bravo. A slight problem is that in the few days with the Bravo my pain hasn't been bad even though I'm really trying to mimic pain inducing behavior. We'll see.
Tomorrow I am also getting a Barium swallow test to make sure the muscular contractions in my esophagus are enough to open the Linx, which is essentially a magnetic candy necklace-looking thing that is put around the esophagus.
I have some great adventures that I have been pushing back and back as this condition has been limiting me so getting the ball rolling has been exciting. More about that next time.
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