Diagnosis & Treatment: My Story of EE

I have a medical condition that I cannot pronounce or spell. I was diagnosed with Eosinophilic Esophagitis (EE) back in 2008/2009. I never had any issues getting food stuck in my throat as a child, the symptoms had only begun in my thirties. I had a few incidents of meat or bread getting stuck in my throat. When this happens I cannot make myself throw it back up no matter how hard I try. I’m not choking, I can still breathe, but I cannot even swallow my own spit and so any liquid I try to wash it down with, and my saliva, come back up every couple minutes. I have to keep trying to wash it down with water or sit and wait for it to finally slide down. It can be very painful and it can also be extremely embarrassing, especially when it happens at a restaurant. It could take anywhere from 5 minutes to 45 minutes to get the issue resolved.

I finally went to a doctor after I had a Mucinex pill get stuck in my throat. The pill ended up dissolving in my throat, burning it. So I went to an ear/nose/throat specialist who sent me for imaging thinking there was some kind of “ledge or web” in my throat stuff was getting caught on. They didn’t see anything wrong with my throat in the initial x-rays. Since I seemed to have the most trouble when swallowing pills, they gave me a placebo pill and sure enough, it immediately stuck. They were then able to see where the problem was. They referred me to the Digestive Health Clinic, where that Doctor told me it was EE. I still don’t fully understand what causes it, but it is most likely caused by or related to allergies. Definition: Eosinophilic esophagitis is a chronic immune system disease in which a type of white blood cell (eosinophil) builds up in the lining of the tube that connects your mouth to your stomach (esophagus). This buildup, which is a reaction to foods, allergens or acid reflux, can inflame or injure the esophageal tissue. Damaged esophageal tissue can lead to difficulty swallowing or cause food to get caught when swallowing. It has been identified only in the past two decades, but is now considered a major cause of gastrointestinal illness. At first I thought I was a rare weird one, but I am now finding out more people have this issue than I ever imagined.

The treatment for EE is to have an esophageal dilation. When I had this done the doctor told me the inside of my esophagus was only as big around as an ink pen before he was able to stretch it. Not much can fit down a tunnel that small. The gastro doctor then prescribes a heartburn/reflux medication such as pantoprazole or omeprazole to take for the REST OF YOUR LIFE. Even if you don’t suffer from heartburn or acid reflux. He also prescribed a steroid inhaler (Flovent) to be swallowed into the mouth/throat, rather than inhaled, believing the steroids can help the inflammation in the throat. The dilation is not a one-time cure and is typically needed every 10 years.

I just had my second esophageal dilation. Yep, that is only about seven years after my first, not ten. Things were pretty good for the first couple years after dilation but then I started having problems swallowing food and pills again and the frequency has greatly increased over the last couple years. I felt the pantoprazole I was taking wasn’t working and after seeing a news story linking long term usage of heartburn medications to early dementia, I decided to stop taking it. (I’m already losing my mind, I don’t need help in that area). About six months later I couldn’t take it anymore and went back for another dilation (June 30, 2016). The good news is the doctor said it was not as bad as the first time. The bad news is that the nurse and doctor both told me EE problems can lead to esophageal cancer in the future and that is why its so important to take the prescribed medication. Crap! LIGHT BULB MOMENT! I cannot even imaging how horrible it would be to have throat cancer. How could you eat? Eating is my favorite! Cancer in by food-hole would be the worst punishment for me. Taking away my lady parts would be better than taking away my ability to eat. Ugh! This scared me enough to be a very good patient from now on and take my medicine. Which he actually gave me omeprazole this time and upped my dosage. And he is sending me to a food allergist to see if there is something I am eating that could be making it worse. I am interested to see what we find out at the allergist. Luckily I am at the age where I am taking my health more seriously and will make sacrifices in my diet to live longer and prevent disease. I will be willing to give up some foods, hopefully nothing I love too much. I guess we shall see.

In the meantime I feel like I should start petitioning drug & supplement companies to make their pills smaller. Why do they have to be so freaking huge? It is ridiculous. I’d rather have to take 3 of something and have it be smaller than take one huge pill. If they can make a tiny birth control pill why can’t they make some of these others smaller? I will not be able to take these herbal supplements ever again unless I grind them up. The capsules in the middle are the largest size I can take without issues. As more people are diagnosed with EE I think we should rise up together and make these companies change their ways. Who’s with me?

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