Friday, February 8, 2013

Living with Eosinophilic Esophagitis & Anesthesia Stories

updated 2.8.13 after reading though my typing errors from being off anesthesia, I decided to do more editing!

Today I posted pictures on Instagram & Facebook of me at my most recent doctor check-in.   I wanted to explain more about why I went to the doctor today for an esophagus scope, endoscopy. I have eosinphillic esophagitis.

Eosinphillic Esophagitis sounds big, dangerous and scary.  But so does hyperhidrosis (excessive sweating), androgenic alopecia (male pattern baldness) & hypertrichosis (excessive hair growth).  (source: CBC News)
In reality, eosinphillic esophagitis is not life threatening, it’s not life shortening, it’s can simply be slightly life altering. 
How we found out I had EE
We found out approximately one year ago that I have EE.  I had been having difficulty eating and swallowing over the course of about 3-4 months before I finally went to see a doctor in December 2011.  After that, a series of appointments were made, and a scope of my esophagus was recommended.  Next thing, needed was to find an allergist. 

That’s right, EE is an allergy related issue. 

EE is a newer condition without a ton of background knowledge.  As an adult, you may have it if you have difficulty eating due to the persistent feeling of chest pain or heart burn. 

It got to the point where I couldn’t even drink water in the morning without a constrictive  feeling in my throat and chest.  My esophagus was so tight it started to hurt too much to eat normally.  

Last year at my endoscopy appointment, they had to dilate my esophagus.  That’s basically stretching it with a balloon.  It took about 3-4 days before I felt normal.  It seemed as though my chest was always in pain during those days.
Later, I had an appointment with my allergist.  He let me know that EE can be caused by food allergies or outside allergies like dust, pollen, grass, etc.  He described that at the current time (Jan or Feb 2012) my esophagus lining was like an open wound and gave the following example:
When you pour gasoline on your skin, it doesn’t really hurt or affect you too much, you simply just wash it away.  But, when you pour gasoline on an open wound, it tends to burn.  A normal esophagus would be like your skin normally, it doesn’t hurt when you eat or drink, but an esophagus affected by EE is like pouring gasoline on that open wound. 
BOOM!  That that was my esophagus!
So what to do when you have EE. 
First, I took a series of allergy tests.  If you have ever had this done, I feel your extreme itching 'pain'.  My test was on my arm and I wanted to scratch scratch scratch!  I also had a 3 day test with food samples taped to my back.  Yes, it is as gross as it sounds, and Neal couldn’t help take off the samples without wanting to vomit.  I thought it was cool, he thought it was disgusting.
Turns out that I have the a lot of the allergies to pollens, trees, & grasses, but they were all very mild allergies.  We did find, however, that I ‘midlevel’ allergic to tomatoes and slightly allergic to coconut.  Well hello!  Neal and I had been making our own homemade marinara, homemade salsa, & I’d been drinking coconut milk & water.  I had basically been hurting my esophagus so much that it was to the point where foods I wasn’t allergic to were hurting the poor inner lining. 
I had to cut out tomatoes & coconut from my diet.  I have been that way for about a year now, and spaghetti with turkey marinara was my favorite food.  Thankfully, I really like pesto and have also been making homemade alfredo. I do miss pizza with red sauce still, but maybe my results will allow for me to eat it a little more this next year!
My endoscopy today
Today I went in bright and early for my endoscopy.  I arrived at 6:30am and was walking out to the car with my husband by 8:20am.

After I awoke from anesthesia, I apparently told Neal 3 times that I had posted pictures on Instagram and that I felt so happy I was ‘wagging my tail’ as I shook my butt around in the hospital bed.  Oiy vey!
They didn’t have to dilate me this year, and for that I was thankful.
Neal made me a delicious breakfast when we got back home.  There was also pancakes from the Cracker Barrel mix, which are SO good.  I actually thought I took a picture of them, but apparently in my loopy delusion of anesthesia wearing off, I didn't!
After breakfast, he and I took a nap for about an hour and a half, and when I awoke I realized I still had the monitoring sticky patches attached to me.  Ouch!  That one on my lower abs area hurt when coming off!
I then went back to work for a few hours and had a rather typical day.  I can feel a little pain in the middle of my chest where they probably took the samples from my esophagus, but it’s not horrible.  At least not yet, fingers crossed!
·         Having EE is not something to be scared of.  If you feel you have any of these symptoms described, you should consult a doctor, and do it before 3-4 months like I did, your esophagus will thank you!

·         Do you have a funny anesthesia story you’d like to share?


  1. I really enjoyed reading your post. I am a 20 something female who also has eosinophilic esophagitis and I just found out that I need to have my esophagus dilated for the first time. I had a mini panic attack at that point but I tend to become overly emotional about my health, however, I am learning to cope with this condition. I am glad your procedure went well and thanks for sharing your story!

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  3. Because Eosinophilic esophagitis is a fairly recent diagnosis for those who suffer from difficulties when eating, there isn’t any medicine for it at the moment. This makes research on this condition all the more important in order to find treatment options for this lifestyle-impairing condition as soon as possible.
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