Life with Eosinophilic Esophagitis
All my life I have had trouble swallowing my food, not being able to eat certain types of food, and overall just getting sick with food. I have never had a good relationship with food basically to tell you straight. When I was 12, I was diagnosed with gastroparesis, then in my 20’s I was later diagnosed with Eosinophilic Esophagitis.
Eating with EOE
When I try to eat depending on what it is, most of the time food gets impacted in my esophagus and I feel like I am choking. This can be so embarrassing when I am with other people, or if I am in a restaurant. Sometimes, I will not even want to eat because I have no idea what my body is going to do to me during that time.
Although before I get into all of this about me not being able to eat, struggling with my food.. all this mumbo jumbo. I am going to get down to the best nitty gritty I can about what EOE is from what I have learned from doctors and through my own research of having it myself.
What is EOE?
EOE stands for Eosinophilic Esophagitis this is an inflammatory condition more of an allergy that involves your esophagus. There is a certain type of blood cell that is called eosinophils. There are several different symptoms that can be contracted with this type of condition but the most common include;
- Difficulty swallowing
- Food impaction
Now, of course, there are several other symptoms, I know I have quite a few others myself. There are just several to name and I want to raise awareness more than anything about this condition not having any kind of cure. When the eosinophils build up in the tube and line the esophagus, this can injure and inflame the esophagus causing damage (sometimes this damage can be pretty severe). This inflammation can lead to scaring and even narrow the esophagus. When this happens, most of the time and in my personal experience you have to go have a procedure done called an Upper Endoscopy. This is normally a last resort though, the first option is to put that person on a PPI. Now, what is a PPI you ask? A PPI stands for Proton Pump Inhibitor
First, like I said above the first steps that a doctor will normally take after a diagnosis is putting a patient on a PPI. If that doesn’t work then the more invasive steps start. I will tell you right now, you will not like them. I hated them myself, but I knew I had to do what I had to do to get myself better, and it wasn’t even better. This was to even feel somewhat on a normal level without an enormous amount of pain. Anyways, the next step is being put on a TOP 8 elimination diet. This diet will make you cry in the middle of a grocery store, trying to find a food that doesn’t have one of the ingredients in it. You will be eating out and just get water, and go cry in the bathroom as you watch everyone else eat normally some food you wish you could just wash down. The TOP 8 Elimination diet is eliminating all of these foods SOY, FISH (Shellfish), PEANUTS (TREE NUTS), WHEAT, MILK, EGGS! That is right, when you do the top 8 you eliminate every single one of these foods, now there are tons and tons of foods made with soy. You won’t even believe how much I learned about food when I would stand in the middle of the aisle reading the back of the package. My husband and I would plan a 2-3 hour grocery trip, we would go down every aisle together and grab box by box, then cans and bags and read everything on the back. Then I would literally just sink down in the middle of the aisle and try not to have a nervous breakdown. For a couple times when we went grocery shopping, it took us both a while to figure out the basics, when we had them down things started getting a little easier. Now the only thing that didn’t get any easier was the money when you have to buy healthy food, and whole food you have to spend a pretty penny for it. We could not in any way afford all the food that we had to buy, but we had to do it to get me to a better state. Finally, the last treatment plan and step that is done, and actually one that I have done every few months or so is an upper endoscopy. When food starts getting impacted, you have trouble swallowing your own spit, there is nothing more you can do. That is when you need an upper endoscopy and the doctor does what is called a dilation on your esophagus. A dilation stretches out your esophagus and helps make swallowing much easier.
(Now, I do want to let you know I am by no means a doctor. I am just living with this disease among others, and this is some of what I have been through, as well as others I have spoken with who have it themselves)
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