In an effort to emphasize that we ALL come with a little extra baggage, I’ve encouraged friends and family to open up about their own stories. If I can talk about shitting my pants in a grocery store, I believe others can share what weight they carry and how their baggage impacts their daily lives. I don’t mean for this blog to be a platform for burden or heartache but rather adversity, perseverance and honesty. And in doing so, we may build further, stronger and broader connections with one another through empathy and kindness. Let’s be open to hearing others’ stories and also build each other up with encouragement to share those stories with confidence. Your baggage is what makes you who you are, and by sharing it we can develop a community of understanding and compassion.
So I’d like to introduce Sara: My best friend. My person. I’ve mentioned her several times throughout my own postings considering she’s been there for me throughout my UC journey. But now it’s time to share her story, as she struggles with an incredibly rare and debilitating disease of her own. I’ve witnessed first hand her tribulations and she too offers a story of hardship dealing with chronic illness. I’ve offered my site as an outlet for her to share what her baggage is, in hopes of helping her connect with others who may also face similar challenges, but also to remind my own readers that “baggage” does not always mean an ostomy pouch.
So here yeah go: Eosinophilic Esopagitis
“ I often try to explain my disease to others, especially when I try to describe why I can’t eat breakfast or eat something offered to me, but I’m not gluten free or celiac. So here’s an attempt for others to understand what this disease is and how it affects my life.
Eosinophilic (ee-uh-sin-uh-fil-ik) esophagitis is a recognized chronic allergic/immune system disease that involves a build up of excess eosinophils, a type of white blood cell. This build up causes inflammation, which in turn results in symptoms such as difficulty swallowing, food impaction, vomiting, and chronic chest pain/heartburn. It is considered a major cause of digestive system (gastrointestinal) illness.
- Acute: Difficulty eating/swallowing, regurgitation, vomiting, decreased appetite
- Chronic: cough, chronic heart burn, chest pain/tightness, esophagus/abdominal pain
Allergies to both food and environment
It’s important for me to express what I deal with in an effort to help people understand. Sometimes I feel embarrassed because of my symptoms or like I owe my company an explanation for my behaviour. This disease is still fairly rare and I myself am still learning not only to cope but also the logistical, medical explanation behind it. Simply put: I can chew normally but often when I try to swallow, food becomes caught in my esophagus often leading to dysphagia (difficulty swallowing) and vomiting. I also have esophageal strictures as well as Schiatzki rings (see photo below) in my esophagus, which create further difficulty swallowing. When inflammation occurs, I frequently need to remove myself from a meal and relieve obstruction through regurgitation. It causes discomfort, pain, nausea and overall panic.
While eating, I chew and attempt to swallow and notice immediately if food is stuck. I stop talking and focus on my breathing. Sometimes it will go down slowly after a few seconds or minutes but if it takes longer I make my way to the bathroom. I pull my hair back and take any excess clothing layers off and aggressively stick my finger down my throat. (There is absolutely no graceful way of making yourself vomit). At this time my saliva/mucus has attacked the food impacted and layers itself around it. It’s an attempt my body is making to help the food go down, but it is highly grotesque watching it come back up. The first time I vomit it’s just a thick layer of mucous, but usually the second or third time, the impacted food releases and comes up. Vomiting takes the pain of my esophagus away but if there is a way of waiting it out to prevent vomiting, it’s always better. After vomiting, I am always accompanied by heartburn in which case I often take 40 mg of Pantoprazole Magnesium (a prescription heart burn medication). Afterwards, I resume eating as per usual, which might seem gross but it has become my normal.
I complained to my family doctor for years about not being able to swallow properly and experiencing difficulty eating. I was sent for a Barium Swallow Test and an ultrasound which both came back normal. Years later, I went back to my family doctor again and it was mentioned that perhaps I eat too quickly for my body to process my food. Thinking it was just me, I continued with normal activities. One particular Thanksgiving with my family I could not eat a single bite of my food. I would attempt eating, and have to run to the washroom to vomit, this happened 11 times during one meal. Entirely exhausted and frustrated, my mom and I headed to a walk-in clinic in tears and explained my symptoms. I was finally referred to an amazing gastroenterologist who conducted a gastroscopy on me (who also happens to be Stacey’s most trusted GI).
My First Gastroscopy
I was put under anesthesia for the procedure. To put it simply, my gastroenterologist took a long tube with a camera and filmed the inside of my esophagus. She also took samples of my throat (cuts a small piece of the lining of my esophagus to test for eosinophil count), and stretched my throat while I was under in an effort to provide some temporary relief (I’m still not exactly sure how this is done, and I’m okay with not knowing).
The Follow Up
I went into my appointment hopeful for answers. My specialist showed me the footage of the inside of my throat and I was clueless. Is that what it is suppose to look like? I’ve never seen the inside of anyone’s throat before. So she explained: The inside of a normal patient’s esophagus is similar to a slide or a tube: it goes straight down and has smooth edges. Whereas, my footage looked nothing like that. I had large rings (Schiatzki rings) and a severe narrowing of my throat. She was absolutely fascinated and asked if it was okay for the lab technicians to come upstairs to meet me. Eosinophilic esophagitis was so rare (2007 at the time) that they had only read about it in books, and had never met anyone with the disease. They asked me questions and I was overwhelmed with happiness to finally have a diagnosis.
This is an image similar to the one of my throat, I didn’t actually keep my own footage.
My options were limited in medication because the disease was so rare and there was limited research done. I started taking Apo-esomeprazole 40mg twice a day (limits acid production in the stomach), Cetirizine Hydrochloride 20 mg once a day (an antihistamine controlling allergic reactions), and a steroid inhaler to be swallowed-not inhaled once a day used to treat the inflammation. Inhalers, by definition are meant to be inhaled and not swallowed. However, because there was no contraption designed for patients with EoE, I was left attempting to swallow the air from an inhaler. I started by placing a spoon on my tongue to hold it down, while propping my mouth open to spray the inhaler (it must reach the back of your throat or it does not work). After spraying the inhaler, you must swallow the air inside your mouth. It was more difficult than I thought but I became quite good at this routine with time.
Gastroscopy # 2
After a year of taking my medications and inhalers daily, I went for another scope to see if my eosinophil count had gone down. I was hopeful in my experimental medication plan, and wanted to see the results. Unfortunately, when the results came back my eosinophil count was the same. I discontinued taking my mediations and tried to eliminate my trigger foods.
I almost always have trouble swallowing:
- Toast/Crackers/Pizza Crust/Croutons… Anything dry or crunchy
- Potatoes & Bread
- Steak/Roast Beef
- BBQ Chicken
- Raw Carrots… every single time.
“Why don’t you try drinking some water?”
When I’m having a flare up, absolutely anything can and will become impacted. I’ve had water become stuck in my throat many times. People usually try to offer me water when something is stuck. Water sits on top of the impacted food and gives the feeling of drowning while choking and often makes the food more lodged, not to mention very unpleasant. Instead, offering anything carbonated can be helpful as it helps to break down the food underneath.
Ten years ago, none of my doctors of specialists had seen (or heard of) eosinophilic esophagitis. However, this year I found a Facebook group filled with 5,000 members who all have EoE. I have only found a few patients within Canada, but I have found it absolutely amazing to finally talk with other people my age who have had the same difficulties. Moving forward I take my medication as necessary, eliminate my trigger foods, and hope for the best. “
Isn’t that we all do? Hope for the best?