Monday, April 29, 2019

EoE: Eosinophilic esophagitis... and other big words I cannot pronounce.

Disclaimer

I'm not a doctor, although I did play one in the TV pilot for Gideon's Crossing
If you don't understand something google it.
If you know more than me about this then say something (please support your statements with links so I can learn more).
If you are having a medical emergency, hang up and dial 911

Back Story

You know when you take too big of a bite or you swallow something without chewing it up well enough and it gets stuck like half way down? Well, this use to happen to my mom all the time, she hypothesized that there was some kind of deformity she must have, like a sink trap, where food would get stuck. Once at Disneyland she regurgitated food onto the floor near Star Tours.  As a young kid I was pretty stunned since she would also fear monger us away from touching anything because "some one might have vomited there" .. and now I'm kinda watching it! Well, she passed this on to me so thank you for that... so into my adulthood I had just sorta accepted this as a genetic abnormality that I was meant to suffer from and there was no cure and, if I were anything like my folks,  I would die from heart disease long before this really became a worse issue.

So I'm sitting, enjoying an expensive dinner and BAM, no food will pass.  I sip some water to kinda force things down and its not passing, and now I have another problem, food tube is filling up with water and spit and starting to drip over into the air tube... thats not gonna end well...

You know how people say, their whole life has led them to this one moment? Well this is not like that, but kinda is.  I got into SCUBA diving and loved it, so I had worked on staying calm under pressure (pun intended) and specifically keeping calm when it came to not being able to breath.  Don't panic goes a long way!  I also LOVED watching magicians and even learned some tricks as a youth.  One that was always interesting were Circus Freaks and Regurgitateors (people that would swallow stuff and bring it back up but not in a vomit kinda way).

So I'm staying calm as best I can as I'm getting ready to start drowning in my own food and saliva when I think, well, gravity still works, maybe I can kinda rattle and "hork" some of this out.  So I head to the restroom, lean over so my head is far down hill, and start kinda thinking about swallowing but in reverse and out comes some water, saliva, and small bits of food.  Huh, I've not "cleared a whole" but I sure bought my self some time before I drown!  So I keep going and before I knew it I had moved enough material that the next sip of water got the rest to pass down!

Now with my new found trick I felt empowered and in much less fear of someday dying from this abnormality that only my family suffer from.  Its like being a Teenwolf but with no cool moves or soundtrack.

In fact, I learned some other great tricks too, ever taken soda water and made dancing beans well, it seems the same thing kinda helps inflate the esophagus when you are trying to swallow, or helps dislodge things that are kinda stuck in there.  
If you stick to foods that soften up when they get wet (like tortilla chips, and pasta) then you can also kinda slowly sip water to get it to kinda slide on down.
Use super cold liquid since cold can get things to shrink a little (probably just a placebo but whatever)

Diagnosis

So I go to get an endoscopy since I'm an adult with health insurance.  I'm thinking we will finally see this "sink trap" thing. Come to find out there is not a "sink trap", but rather a swelling in the lining of the esophagus!  This restricts the diameter so food just won't pass to the stomach.  It also means the endoscopy scope they use for adults wont fit and they have to switch to the kiddy one, hense my nickname "baby throat".

They say they want me to go for allergy tests and do some other stuff and I'm like "sure, we will get around to it, for now I just want to rub this into the face of my friend, my best friend, that had always teased me about getting food stuck!" BAM, I have a medical condition you insensitive jerk!

So I did what normal adult males do, I ignored it for like 10yrs.

Eosinophilic esophagitis (EoE) was not well known and is now known to affect about 1 in every 2,000 people. So about 10yrs ago info was still lacking so I didn't really bother looking to hard for details.

Food started to get stuck a lot more often so I go in and ask my General Practitioner if I could have a referral to get a blood test for some potential food allergies that are making my throat swell shut.  She reviewed my old file and refers me to a GI for the expert opinion.

New GI is very kind and wants to scope me. I don't wanna get scoped but she basically won't take no for an answer. She uses the fear mongering I had grown up with to "encourage" me to let her get a biopsy and confirm the diagnosis of Eosinophilic esophagitis (EoE). She also wants to check to see if there is a permanent obstruction that has formed because of EoE which will require surgery. Yikes, I wanna get ahead of surgery so fine, lets check... oh, and since its probably EoE which is probably caused by a food allergy, she wanted me to cut out dairy products.

Going the extra mile

I decide to google "EoE elimination diet" and find a nice little PDF I can work from as a guide.  It outlines the top 6 food allergies: Milk, eggs, wheat, soy, nuts / tree nuts, sea food / shellfish.
This is basically a list of the foods I eat everyday.  Basically all the best foods somehow fall into this category. So I jump in with both feet since I know I'm gonna have to do this soon anyway when they confirm diagnosis, and I'm gonna start now because I'm gonna mess it up so I need some practice.

Reading Food Labels

So it seems that basically everything is made with either wheat, milk, or soy. I really do mean everything.  So if you are gonna skip those things you basically are eating whole fruits and veggies.  Salad dressings got it in there, chocolate, oatmeal! The worst is to find something that seems to fit then to see the warning: "produced on shared machinery that also produces the list of things you cannot eat".  Seriously.

So here I am thinking to myself, I need to eat something, and all the food I normally eat is something I need to avoid, at least for now, so I'll go buy some apples or something? But there is a factor that you might not be considering in a diet change like this... teeth.  I kinda have bad teeth, well, to be fair, I think the issue is the gums (mine are soft and receding).  So eating a lot of hard crunchy veggies and fruits is now making my teeth hurt!  So eating, one of my favorite past times, is gone.

Hopefully Optimistic

Well, if I can identify things I must avoid, maybe there are things I'm okay having (maybe I can get chocolate back?) and this should generally improve my life/health which can extend your life.  But do I really want to live in this new hell even longer than I had previously anticipated?
I'm thinking this will probably all be a good thing, and I guess I can always reserve the option of hastening my end by getting a double grilled cheese with a giant chocolate malt... but for now, I guess I'll keep fighting.