I have eosinophilic esophagitis. I’ve briefly explained it before in my “World Rare Disease Day” post and in “My Chronic Illnesses part 3.” However, I wanted to explain it in more detail because it’s probably the condition I get asked about the most.

I do feel the need to add my disclaimer to this post: I AM NOT A DOCTOR! The information in this article is for awareness only and is not intended to diagnose or treat any conditions. If you suspect you may have eosinophilic esophagitis, please talk to your doctor before taking action.

Eosinophils are a type of white blood cell that react to foreign invaders in the body (in normal circumstances). When concentrated in a tissue and triggered, the affected tissue becomes inflamed. Normally, eosinophils are either present in extremely low numbers or completely absent in the blood.

The esophagus is the “food tube” – the tube in your throat that connects your mouth to your stomach. There are two different “tubes” in your throat, the larynx and the esophagus. The larynx is the opening through which air passes and it contains your vocal cords. The two tubes are separated by a “flap” called the epiglotis. When you’re breathing, the epiglotis is open, exposing the opening to the larynx. When you swallow, the epiglotis closes to prevent any non-air particles from entering your larynx and lungs. The esophagus is a soft and flexible tube lined with muscles. When you swallow, the muscles contract in such a way that they squeeze food down into your stomach (similar manner to which your intestines contract). The reason swallowing a bite of food that is too large or not thoroughly chewed can hurt is because the muscles in the esophagus contract hard and squeezing on resistance is uncomfortable (put a medium sized object in your hand and tried to squeeze you hand shut, it won’t feel fantastic).

In eosinophilic esophagitis, eosinophils collect in your esophagus. Instead of only accumulating in response to an infection, the eosinophils are constantly present. Usually, they are not constantly triggered, but they are always there. Since they’re always there in high quantities, any allergen/irritant can trigger them into starting an inflammatory response. When they get triggered, the lining of the esophagus swells and restricts the size of the opening through which food can pass.

What can trigger eosinophils? Sadly, anything. The triggers vary person to person, and they don’t have to be the same as your systemic allergens/irritants. The triggers also do not have to be food – anything that can get into the esophagus can trigger the eosinophils.

We have not been able to fully identify all of my EoE triggers, which can be exceedingly frustrating. A few of the triggers that we are aware of are: pollen (pretty sure they’re all of my pollen allergens), airborne dust, excessive sugar (we think), dry air, exceedingly cold air, and dry food. Obviously, that’s a lot of triggers, but it’s still frustrating when my EoE flares without any warning.

What does an acute flare feel like? Acute flares come on very suddenly, without any warning, and are the scariest to deal with. You can be eating things and be fine, then suddenly you eat one more thing and it gets stuck. If it only gets partially stuck, it feels as though you are trying to swallow a bite of food you didn’t chew properly (and this feeling can happen when eating something that does not require chewing). When the food gets completely stuck, you legitimately feel as though you are choking. Food getting completely stuck is called an impaction.

With a full impaction, you cannot swallow anything, even your own saliva. And, since you’re throat is screaming in pain, you start salivating even more! The inability to swallow all that saliva makes you feel like a rabid animal. Your body and brain then start to panic, assuming you’re completely choking – but you’re not and you can still breathe. This requires a lot of calming self-talk to avoid a panic attack. However, your swollen esophagus can make breathing difficult because the esophagus and larynx are right next to each other so the swelling can put pressure on the larynx.

With a full impaction, there are three options that you have: vomit, manage to eventually swallow the thing stuck in your esophagus, or go to the ER. Yes, a full impaction is considered to be a medical emergency and can require a trip to the emergency room – I usually wait a little bit to see what my body is going to do before heading there because they can happen often if I’m flaring. After you’ve had a few impactions, you can also tell if the food is going to move up or down, or if it requires manual removal. Vomiting up the food stuck in your esophagus only works if it’s stuck higher in the esophagus, and your body will eventually do that on its own if you try coughing. Sometimes, carbonated beverages, ice water, and/or liquid Benadryl can be used to get food to pass down (the ice water and liquid Benadryl can both calm the inflammation, the carbonation can help break the food down into smaller pieces). Either way, making the food move is extremely painful.

The first, and thankfully only, time I had an impaction requiring emergency treatment, the doctor there new a non-invasive trick to get it to move. Instead of the usual scope, they were able to give me a cocktail of nitrogylcerin, morphine, and glucagon. While that was an extremely unpleasant experience (both nitro and morphine make me feel extremely sick), it reduced the swelling in my esophagus and the food was able to pass into my stomach. Usually, the ER will take you to get a scope where they will use a little grabby tool to pull the food out of the esophagus.

All of my other impactions have allowed me to either swallow eventually or vomit. However, these usually require help from Dan. To get the food to move, I have Dan slap me pretty hard between the shoulder blades a few times (well, thump on my back, not just slap). It’s very similar to the infant Heimlich Maneuver. I will also attempt to swallow ice water or cough (depending on where I feel the food is stuck). It’s extremely uncomfortable, but it will work eventually. (My doctors get very wide-eyed when I mention these methods, please do not use these without consulting your doctor. Removal in the ER is the only safe way to deal with an impaction.)

What does a long-term flare feel like? A long-term flare is the most obnoxious type of flare. These can last anywhere from a few hours up to several days. Thankfully, long-term flares aren’t as scary now that I have a diagnosis, since I know what is happening. My last long-term flare was an entire day, so I’ll kind of outline it for you so you can get an idea of what they feel like (they all feel similar). I woke up with a lot of phlegm in my throat and coughing slightly. After I got some of the phlegm to clear, it was slightly painful to swallow – it felt as if something was coating my throat and making it narrow. I thought it was just excess phlegm at first, so I went and ate breakfast. For breakfast, I had oatmeal (which is really soft), and it was extremely painful to swallow – that’s when I realized it was an EoE flare. As soon as I realized I was flaring, I went and took some liquid Benadryl and set a timer for four hours to take my next dose. Then, I had yogurt for lunch, and that was getting stuck. The constant gag reflex happening was making me extremely nauseous, and I was getting pretty hungry. I took Benadryl pills at 4 hours, which were very difficult to get down. Then, at dinner, my first bite got stuck. So I went into a bit of a coughing fit, took more liquid Benadryl, and finished my dinner. After dinner, the last bite was still stuck in my throat, but it was only a partial impaction (I could still swallow liquids). I decided a small walk might help move things around, and thankfully it did. But my throat was extremely sore for the rest of the night. Thankfully, after even more Benadryl, some NSAIDs, and some sleep (along with my normal medications for allergies), I was feeling better the next morning.

As you can see, long-term flares are a slower form of the reactions. For me, the longer term flares do not usually involve full impactions, or they will only occur with dinner. I try to eat as much soft food as possible, and drink plenty of fluids.

The scariest part about EoE is that it can cause permanent damage to the esophagus. The more flares, especially intense ones, the worse the damage can be. Eventually, the scarring left by the inflammation can render your esophagus totally useless. Thankfully, at this point, I do not have much scarring in my esophagus.

How do I manage it? I’m on tons of medications for allergies. I take four different medications to help with my systemic allergies, and then I take ranitidine (Zantac) twice a day specifically for the EoE. Keeping my systemic allergies calmed down definitely helps with the EoE reactions, but is very difficult. One of the usual courses of treatment for EoE is taking something like Pepcid or another acid blocker, but those made me extremely sick and did not help my EoE at all. Yes, Zantac is a heartburn medication, but it works completely differently from Pepcid. Thankfully, ranitidine and my allergy medications help a lot and it doesn’t flare as often as it used to.