This week we bring you a story from another strong and resilient individual. The condition brought to the spotlight is one that is barely covered in medical school lectures, but it has one of the most complex management plans.
Eosinophilic Esophagitis (EoE) is a chronic inflammatory condition in which the esophagus becomes sensitive to a wide variety of allergens. When in contact with such allergens the eosinophils, a type of white blood cell (the immune system's first-line army), begin to infiltrate the esophagus resulting in an immune response and inflammation. Eosinophils are normally not present in the esophagus so the presence of these cells on endoscopy almost guarantees this diagnosis. When the esophagus is inflamed it is highly irritable and leads to significant narrowing, making it difficult to swallow food, causing reflux, and possibly spreading the irritation to the surrounding structures.
.......
"I was a picky eater as a child. There seemed to be something about the taste or texture of certain foods that didn't sit quite right with me. It was always the same story. We would sit down for dinner and my mom would be determined to make sure I ate. Being a picky eater was just not an option. Five-year-old me would have never imagined how events would unfold years later. By the time I was in high school, I had lost 60 pounds and could hardly eat a slice of bread without choking on it. They said I had a swollen thyroid and bad gut health, but no one could answer my question; WHY? I thought perhaps I was sensitive to certain foods and slowly home cooked meals became my go-to.
But things were in for another twist. Moving away for university brought with it many challenges, including more cafeteria food and less home food. The processed foods and cross-contamination of ingredients took a toll on me every time. I found myself drifting to coffee, salads, or unhealthy alternatives for comfort. And once again, I was searching for a reason for my symptoms. Could it be the braces this time?
Not too long after, I had my first episode of vomiting, hyperventilating, and passing out. And after that, the trips to the ER became regular. It was becoming difficult to explain the situation to my family without worrying them. I continued to try to find answers, and while there were many answers I didn't know which one was correct. Was it allergies, was it the stress of being a student (a diagnosis I was usually given in the ER), or something else?
I am thankful for my family doctor who got the ball rolling by ordering my first endoscopy. The procedure was unexpectedly awful. Both the adult and pediatric endoscopes were unable to go down my inflamed esophagus, an otherwise highly unlikely complication. From what was visible, they told me I had close to 200 eosinophils in my esophagus. Thus the diagnosis was made, eosinophilic esophagitis, a diagnosis that is rarely seen in my age group. Endoscopies became more frequent, I was given medications with several side effects, and I started an elimination diet with not much relief of symptoms. Allergy tests indicated that I had allergies to a lot of environmental agents, but often these tests can be indeterminant for many with EOE. And so, I was let go without further follow-up and referred to an allergist.
Several months in with recurrent symptoms, I came across a research article by a professor at my university. She advocated for me to receive an endoscopy to confirm the diagnosis for targeted management. If I had not seen her that day my esophagus would have been so swollen I would have needed an NG tube. The very thought of being unable to eat was terrifying. I was started on esophageal dilatations every 8 weeks with the goal of bringing my esophagus from 5mm to 15-20mm. My roommate became a big part of my recovery during a mentally tasking 1.5 years of dilatation procedures.
Two weeks ago I swallowed a pill for the first time in 8 years. I CRIED. The idea of swallowing something without having to chew it and not having reflux was life-changing. It may be a little thing for others, but for me, this was the biggest accomplishment and a much-needed reassurance.
Being followed by the doctor I have now, who does research on EOE, was a boon. You can see when someone has a passion for something and hers was to help people not just by managing symptoms but by stopping them altogether. I have never had a doctor meet me after every procedure and explain how the events unfolded. She took what I wanted to do in life, where I was living, and made it all work miraculously.
Since my diagnosis, I have seen the support of my family, friends, and physicians grow. I have been able to join focus groups and read up on EOE to be my own health advocate. It means the world to me to have such supportive and understanding people who have been there through each stage of this journey. I am proud of myself for surpassing the mental challenges that I constantly encountered over the last few years. It was not an easy or predictable journey, and neither will it be going forward, but I feel strong knowing how I had risen above the challenges and knowing that I am surrounded by so many people who care."
.......
- Anonymous
No comments:
Post a Comment