By Tara - January 2012
Well, my acid reflux has been kicking my butt all afternoon, and I figured, I may as well take advantage of the lovely volunteers and vent to people who may actually understand where I’m coming from. So here goes. This is my story…
My name is Tara S, and I’m from Rhode Island. I’m fifteen years old, a sophomore in high school, and I have had GER since age 6. I never had problems when I was a baby, and getting acid reflux disease suddenly as a first grader stumped everyone. My first episode put me in the hospital, because the symptoms I was displaying led them to believe something was going on with my heart. When they realized my heart was normal, they brushed it off as an anxiety attack, probably just caused by indigestion or something minor and focused their efforts on treating me for anxiety. They didn’t realize that whatever anxiety I had was caused by a deeper problem- severe acid reflux. They figured out that treating me for anxiety was not effective and soon realized it was acid reflux.
So, they put me on medication for it. For the most part, the medication worked for a good number of years.
When I started to hit about 5th grade, the effectiveness of the medication wasn’t as strong, but I could still function for the most part. But the meds continued to lose their effectiveness. So sometime around the beginning of middle school, they put me on a stronger medication. The stronger medication was temperamental- occasionally it would work, but other times it wouldn’t. From about the time I was in seventh grade up until my freshman year in high school, I took this stronger medication, never really expecting it to work completely, but at least hoping for some sort of relief. It varied. I had my good weeks and my bad ones. Some weeks, I’d only get a couple episodes every week or two. Other times, it would be so bad, I would get it anywhere from several times a week, to once a day. It was making it difficult to function. I would lose sleep from waking up at 2 in the morning to go run into the bathroom to go cough up acid into the toilet. I was also very limited socially. My physician kept referring me to different gastroenterologists, but for years, none of them returned my call. At 13 or 14 years old, I was too old for a pediatric gastro, but too young for a regular one. It was awful. The children’s hospital, who my physician sent us to, wouldn’t even contact us back. I felt like I was slipping through all the medical cracks and only getting worse. But the worse part was- NOBODY knew how it felt! Around the beginning of my sophomore year, we found a practice in the state and called them, with low expectations, assuming we’d once more fall through the cracks. We explained the situation, and the gastroenterologist, who I was too young for, still said he would definitely see me without question. Within a week of my first visit, he was already doing an endoscopy and esophagus biopsy on me. Since then, he has put me on new medication. It isn’t completely effective, but I have an upcoming appointment with him for a follow up. We’re just gonna keep trying till something works!
Even though I’m on the medication now, it isn’t always affective. I still get my bad days. Today was one. I though I was gonna vomit in class. I was just waiting to blow! (thankfully I didn’t, and got home in time to take my medication!) It’s still difficult. At fifteen years old, it’s been a strain on my personal life. Nobody understands. They think I’m “overreacting to an upset stomach.” I don’t get taken seriously a lot. People brush it off as either I’m too young to know what acid reflux “really” is, or I’m too old to really get acid reflux because “only babies can get it.” That’s not true, and I am a perfect example of it! It’s really hard to describe to my friends as well. I get really upset when they’re mad that I have to stay home and miss out on going out because they think I’m just being a wimp. They don’t understand that some of the reflux pain I get is some of the worse pain I’ve ever felt. It takes a lot to make me cry, but I’ve been in so much pain before that I’m always in tears. People don’t get why I can’t eat certain foods. My reflux is very temperamental, and I don’t know what’s going to set it off. But there are definitely certain foods I just avoid. Sometimes it’s stress induced. I get it when I don’t eat as well. Or eat too much. It really requires an absolute PERFECT balance, that none of us have been able to figure out yet, giving me one more reason I can’t control it.
I just wish I wasn’t as alone as I am. How am I supposed to react in class when I start to cough and end up with a mouthful of acid? How am I suppose to excuse myself to go vomit in the bathroom when I’m out in public? How do I explain to my friends when one minute I’m fine and the next I’m in tears and my stomach is making weird, gurgling sounds? It’s embarrassing to burp louder than a full grown man who’s probably twice my size- and not have any control over it. It’s hard trying to explain when my friends come over why my bed is tilted- lifted five inches higher at the head.
Why can’t I eat certain foods at certain times? Why am I always moving and stretching in different directions trying to find a comfortable position? Can’t I just suck it up?
No. I can’t. I don’t know why it happens to me. Why I didn’t just out grow it and why my life has consisted of pills, heartburn, doctors, and discomfort for over 9 years. People don’t realize that I have a disease, just like anyone else with any other digestive disease- and it affects the way I live my life.
Well, it’s all a waiting game now, but thankfully I have found a doctor that cares and this great support group.
Thank you for reading! I greatly appreciate your time. I just wanted to share my story and get that off to my chest!
If anyone has any advice or support and wants to share with me, seriously, I’d love to hear!! Please, email me back at this address at ANY time.
Thank you so much! xox
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