Gut on Fire

A true story about my stomach, my life, and my journey

The burn

My stomach has hurt for as long as I can remember. Even when I was incredibly young, although I didn’t have the words to express the hurt, I still remember there being something wrong. There was a burning sensation that always seemed to just be there and as I got older the burn got worse. It felt like my entire throat and esophagus was on fire. I’m sure I didn’t have it as a toddler, but I certainly had other signs of gut dysfunction like chronic constipation.

It seems like the “burn” has always been a part of me and it should have been a sign that something had gone array in my gastrointestinal symptom. It should have been a major clue. Except it wasn’t. Nothing was actually done to help me until around age 14 or 15. I don’t remember how old I was when the heartburn got so bad that I couldn’t eat and it felt like acid was in my mouth and in my nostrils. This may have been around the same time that I was put on birth control to “control” my hormones and the terrible pain I experienced during each menstrual cycle. My parents can’t recall the timing either. It had to get really bad for the doctor to notice and it was only then, when my doctor finally recommended I see a gastroenterologist.

I don’t blame my parents or the doctor really. How could my parents know that something was really wrong. They both suffered from acid reflux as young adults and both had been taking acid reducers for many years. Doctor’s know best, right? That is what my parents believed and there were told their reflux was because they just had too much stomach acid and the only course of action was take a medication. Decades later, too much stomach acid is so rare, it’s not a thing. In fact, not enough stomach acid and acid in the wrong place is the major cause of acid reflux, but we will get to that later. At this point in time, all I knew was that my doctor told me I had it and I needed to be tested.

Boy, was I tested. Over the course of my young adult life I was tested multiple times and all the tests were negative! The doctor had no explanation as to why I was having terrible heartburn, burping, and stomach pain. I was miserable after eating, and at times, the pain was so bad that it hurt to breathe deeply. I’m sure I was given a list of most common food causes for GERD, but I know that there was not much importance placed on this aspect of acid reflux, and I was certainly not referred to a nutritionist or dietician for help.

The Tests

· H Pylori- a bacterial infection in the stomach that can cause indigestion

· Hernia- which can press on the esophagus and causes acid to reflux up into the esophagus

· Endoscopy-I am not even sure why they did this one because it was so long ago.

So if I was negative for the most common causes of GERD, what was the real issue? There was no explanation for the root cause of my acid reflux. I was given instructions to take the medication and follow up in a few months. A few months later, I was told the same thing. I believed I had to take the drug for the rest of my life. Daily acid reducers were the norm in my family. So I did take the medication for life. There were times that I tried to come off the medication. I remember one such instance in my late 20s. I stopped taking the medication cold turkey with no wean period. Not only did I suffer from heart burn, but I developed a chronic cough, my throat hurt, and I lost my voice. My husband at the time begged me to take it again, and so I did, for more 10 years.

The consequences

In total, I took an acid reducer for about 20 years. Twenty years of being told that it’s just me and there isn’t anything I can do but take the medication. The whole class of medications to be exact because in that 20 years I was switched from one drug to another because they stopped working. I was always on the class of reducers called proton pump inhibitors. These medications are so strong, that they can reduce the amount of hydrochloric acid secreted from the parietal cells of the stomach by as much as 80%. Now you might be thinking that’s a great thing if you have too much acid, but what about the body’s ability to breakdown protein and activate B12 with intrinsic factor?

The sad fact is, the body requires a strong acidic environment in the gastric lumen (pH <2) to facilitate food digestion, promote absorption of minerals like iron and calcium, and kill food-derived bacteria. If the pH is too basic, digestion doesn’t happen. I repeat, digestion doesn’t happen. So for me, years of rock bottom acid production, has lead to many downstream consequences. So many, that even after 6 years of being proton pump inhibitor free, I am still trying to heal my gut. I no longer have acid reflux, but I am left with the side effects of not having enough stomach acid for years.

Taking an acid reducer for years created a host of issues that I am still dealing with to this day. But the real problem was letting the true root cause of my stomach pain go unchecked for decades. This combination has left me with several chronic health issues. I now have SIBO (small intestinal bacterial overgrowth), inadequate digestive output, food sensitivities, rosacea, and Hashimoto’s thyroiditis.

What had I been taught?

So I lived with reflux, through high school, college, and graduate school. I became a pharmacist and learned that symptoms can be controlled with medications. I believed that most people had no control over disease states and medications and drugs were the answer most every ill.

It wasn’t until I was about 35, that I began to question everything that I had ever learned. I got divorced and moved to be closer to my family and that change really allowed me to grow in ways I never thought I would. I learned that maybe there was a real reason I had acid reflux, and it had nothing to do with having too much stomach acid. I began to take dramatic steps to heal my gut and stop the burn once and for all. Medications didn’t do that and certainly no GI specialist.

The story

So this is my story. You might think it’s just about a stomach. It’s also a story about growing up, finding love, dealing with loss and heartache, suffering, joy, and a struggle to find my place in the world. It’s a story about being human. It’s about my journey. My stomach was, is, and might always be a little bit broken. I’m 40 years old. I’m still on a journey of healing. I am writing this in the hopes that maybe we can change the way we view healthcare and maybe young girls can stop suffering, stop being labeled as hormonal, stop being swept under the rug like its just a matter of controlling our hormones and maybe we can stop the downward spiral of chronic disease for the next generation.

Follow me as I write my story, one article at a time.