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ZACH BARBER

Eosinophilic Esophagitis

TELL ME YOUR STORY

"I was able to eat most of my life and then when I was 12, I got diagnosed with this disease. I started throwing up, and my mom and I thought it was a stomach bug or something. I ended up going to the doctor for swimmers ear and while there, they took my weight. They were worried about how much weight I lost and told me to go see a gastroenterologist. So we went and I got an endoscopy done because they suspected that I had Eosinophilic Esophagitis. After I had an endoscopy, they saw that I had a bunch of white blood cells which confirmed their suspicions. For the next three years, I got super sick. My symptoms included throwing up, abdominal pain, malnourishment, and brain fog. We tried a bunch of medicines and some steroids, but I just got more inflamed. I got to the point where when I was 15 years old, I was throwing up after everything I ate. Things I was tolerating before I couldn't tolerate it anymore. I went to the doctors and they were basically out of solutions. My last resort was being put on a medical formula diet to let my body calm down first. Like a cleanse or reset. I was super mortified because I didn't want to look weird at school. I wanted to fit in in high school, but now I wasn't going to be able to eat anything. Anyways, my doctors said he wanted to try this for three months and that I could still have three foods. I chose rice, coconut, and corn. So for three months this is all I had and when I went back to the doctors they said I was only a little bit better. The doctors told me that I had to be taken off more foods and I was so depressed at this point. I chose to stick with rice because it ended up working. A couple months went by and I was tested again. Things were looking good at this point so we could start introducing foods slowly. I was super pumped about it that summer, but when I ended up trying foods, I just kept getting sick and throwing up no matter what I tried. So what was supposed to be temporary it turned into eight years of rice, pears, and formula. It just became something I'd bring to social events. 

 

I'm a swimmer and I took a hit with my stamina, I had a lot of fatigue and I burn so many calories in the pool. So swimming motivated me to drink my shakes and it helped me persevere a little bit. This was when I was a sophomore year of high school. When I was going into my junior year I started being open about my situation and my friends were really understanding. I lucked out, but it was still mentally hard. I mean, society revolves around food so not being able to really participate in that was taxing. I struggled a lot with depression and sadness. I ended up pushing forward and just chugging shakes and I actually ended up getting a feeding tube to make things a little easier. I kept going with swimming though and I was actually able to break some records, which was cool to do that without eating.

After high school, I went to BYU and I decided to live off campus so I could make my shakes. This was really tough because you live in the dorms to meet people but I didn't get that. It was good though because I realized the value of a friend. I stopped chasing the popularity and trying to be cool. 

 

I went on a mission to Orlando, Florida and was surprised they let me go because of my health problems. I went Spanish speaking and honestly I got wrecked out there. Everyone kept asking why I couldn't eat in Spanish but my Spanish sucked. Then they would point out that I couldn't eat like multiple times and hearing that everyday starts to tear you down. After four months, things got pretty tough. My anxiety got worse and I started reacting to rice and pears. I was frustrated and depressed at this point because I felt like I was trying to do something good. So for the next six months, I was on formula and water. I was miserable though and got desperate. My mom mentioned a clinical trial and I got permission to try it on my mission. But this was hard because for the next four months to qualify, I had to show that I was struggling really bad. I convinced myself to eat normal foods in order to qualify, but this meant throwing up daily and being in excruciating pain. I ended up losing 30 pounds and this resulted in my coming home early from my mission. I pushed my body through so much pain that I had a mental breakdown. I got diagnosed with a disorder called conversion disorder. I started stuttering, talking gibberish, forgetting people, couldn't speak, and my muscles wouldn't move. I started going to therapy to help with everything.

 

My tolerance went to zero when I came home in 2018. That June I got on a dating app and ended up meeting my wife. We got married in 2019. In 2020, the pandemic happened and I had to drop out of college because my body shut down. It was tough but new meds were in clinical trials that year. I was able to try them since I tried literally everything else. They ended up working! Since March 2020, I've been on these meds and I've been able to build up my diet to pretty much everything. My symptoms are pretty much gone and I don't get pain or throw up. I still do get some fatigue and malnourishment though, but it's been good.

I feel like his trial has helped propel me into being a great human being and an understanding person, so I created a podcast called Rice Cake and Pears."

WHAT WAS THE HARDEST CHALLENGE?

"The hardest thing was probably eight years of going out to social settings and not being able to partake like everyone else. The mental and emotional part of that is way harder than the physical in my opinion."

WHAT IS THE BIGGEST LESSON YOU'VE LEARNED?

"I feel like the biggest lesson is that just because you're trying to be a good person doesn't mean that things won't happen to you. Like spiritually just because you're trying to do good things or like you believe you're doing something that's aligned with your beliefs. It doesn't mean God's going to take away your problems. I don't think that even everything is necessarily meant to be learned from but like He wants to see how we'll react."

WHAT IS THE BIGGEST BLESSING THAT HAS COME FROM THIS?

"Honestly, my wife. It's been a huge blessing. She's my best friend. She supports me. When we were dating and my body would shut down and I'd speak gibberish in front of her, or I'd go through different emotions, or just be really sad, she saw through all of that. She has the ability to care for someone in that state. She never complains and that's something I'm trying to work on. "

IF YOU COULD SAY ONE THING TO SOMEONE WHO IS STRUGGLING WITH THIS NOW, WHAT WOULD YOU SAY?

"Allow yourself to be pissed and to be angry and to be sad. You need to allow yourself that time to grieve and be upset. That's normal. Don't let it take over your life though. At some point you'll start to learn that being negative won't make you any happier. And if your situation is not gonna change, which do you want to be negative or positive? So choose to be positive. It takes time and it's a journey. It's normal feeling that way but eventually you need to choose happiness."

ZACH'S PODCAST

CHARITIES

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