ANONYMOUS'S PERSONAL STORY

February 11, 2016 Gastroesophageal Reflux Disease

I was 14 when I was diagnosed with GERD. I was healthy, a varsity soccer player, a straight-A student, and I almost never missed a day of school, until GERD came into my life. I was playing in a soccer game on a hot day, when I had difficultly breathing, chest pain, and I started blacking out. Long story short, I ended up in the ER with heat exhaustion and with orders to rest and get more fluids, and follow up with a doctor about possible asthma. And so begins my journey. I went to an allergist for the possible asthma, but nothing. I developed a chronic cough and would cough so hard I'd throw up. I developed pneumonia and had to sit on the sidelines at my games for weeks. I started missing school, and I had trouble eating. I felt nauseous 24/7 and I lost about 10 pounds in less than a month (and I was super fit!) I became anxious and depressed and I was sick constantly. I was passed from doctor to doctor and specialist to specialist. I was probed and had endoscopies and lots of blood work. Finally I got a diagnosis: GERD. I was excited because I thought I could be treated and that I would get better! I started Nexium, but it didn't work. I tried Prevacid, and it started helping as soon as I got to the max dose. However, I noticed I had less heartburn, but that my nausea wouldn't go away. I was still having breathing problems and I was on steriods, multiple inhalers, motility drugs, and PPIs. I was probed again and it was discovered that I also have non-acidic reflux, so even though the acid is gone, I reflux food and liquids around 90 times a day. I felt like I never got a break. I had swallowing studies and found out that my esophagus had 50% peristalsis, but less than a year later it moved down to 40%. That means I can only move food down my esophagus 4 out of 10 times.
Now, 4 years later, eating is still a struggle, but it's gotten better. I made lifestyle changes, and they've helped. But even when I don't eat within 3-4 hours of going to bed, I still wake up almost vomiting 1-2 times a week. I can't get anti-reflux surgery because my esophagus can't push food down well enough even without a tightened LES.
It's hard living with a chronic illness, when you look fine (when you don't have probe!), but inside you feel sick constantly. It's hard to do normal things when you feel horrible, but we're strong. We do things that are hard for normal people, but we do it as sick. We live life to the fullest, even when we are in pain. We may not have a terminal illness, but what we have is real. What we have is not a joke, and it is not all in our heads.
We may have GI problems, but we have hope!

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