- Lori Carol Maloy
My Battle with Barrett’s Esophagus Disease
The day the nurse practitioner shared the results of my endoscopy, I sat numb and stunned when she told me I had Barrett’s esophagus, a precancerous condition of the esophagus. I was barely able to hear all her instructions and the foods I couldn’t eat anymore. With the kindest face she could impart, she handed me the no-food list, and a prescription for a PPI (proton-pump inhibitor) and said things had progressed to the point that I would have to take the meds for the rest of my life. I sat and cried once I got to my car and wondered when I was going to die.
For many, hearing you have Barrett’s disease can spark the same kind of panicked reaction that I had. I’d never been a drinker or smoker and people always teased me about my healthy diet … so, what was going on? Sure, I remember having gas, acid-reflux, and IBS years before, but it had gone away … or so I thought.
According to Dr. Jamie Koufman (a book I found after the diagnosis; she’s amazing–more about the stalking later in the article), Barrett’s is the result of long-term reflux and GERD symptoms. Disobedient stomach acid that doesn’t stay where it belongs–in the stomach–moves up or “back-flows” from the stomach into the esophagus creating damage to the tender lining of the esophagus. She goes on to add that when these acids back-flow into the throat at night when we are sleeping they can move into the respiratory tract as well. She calls this laryngopharyngeal reflux (LPR) or silent reflux. My symptoms of silent reflux or “respiratory reflux” as she calls it, included waking up gasping for air and coughing, a very hoarse voice in the morning, and a runny nose that happened at the oddest of times.
I had even checked out the local emergency room on several occasions thinking I was having a heart attack. I remember one time I’d eaten so many garlic cloves to stave off the chest pain that I stunk to high heaven when I got onto the bed in the ER (of course I explained the odor, who wouldn’t to save face). Apparently, I wasn’t having a heart attack at all, but their tests never outlined where the chest pain was coming from.
Turns out I was having esophageal spass. What are those, you ask? Well, I’ll try to explain the best I can. What I do know is that these spasms hurt like crazy. It feels like a heart attack slamming you right in the middle of your chest and the pain spreads through to your back as though you’ve been stabbed with a knife. This kept happening and I knew if it wasn’t a heart attack, it had to be something serious.
The internet. I know what you’re thinking. When a doctor watches your lips move and hears you say you’ve been symptom searching on the internet, he goes pale and his life’s blood seems to run out of his body, but there is no evidence on the floor beneath him. Then his eyes roll back in his head and he gives you the look. You know the look, don’t you? I hope I’m not the only one who gets the look.
Well, anyway, I explained to the gastro doc that I’d been searching and searching, and I thought I might have the gift of GERD, and at the worst of it, esophageal spasms and possibly Barrett’s. He wasn’t happy with my investigative work and ordered several tests of his own along with an endoscopy. Turns out, I was right. Ding. Ding. Ding. And he hands me the prize, a PPI and a description of the irreversible damage on my lower esophagus, plus a bonus gift: A hiatal hernia. Turns out you get these free when you’ve had GERD for years.
I went through a mild (maybe not mild) stage of worry, fear, and come to Jesus moments. I made my will, left several notes hidden around my house (in obvious places I thought they’d scope out first after I was gone: my fridge, desk drawer, clothes pockets looking for a senior cash stash) with info about how I wanted my funeral to go, and which songs I thought would be appropriate. Finally, I told God I was ready to soar with the angels. But, meanwhile, I had to change my diet (drastically), buy one of those foam bed wedges, which makes the act of sleeping look like an intense exercise without the sexy personal trainer, because you’re always waking up at the foot of the bed and you have to repeatedly crawl back to the head of the bed and try to return to sleep (on your left side), that is. Left side because this is the only position that eases symptoms and may keep the stomach sphincter more closed than other positions.
Changing sleeping positions has been very challenging. Very is a understatement, I mean totally and incredibly challenging. I’ve slept flat on my back my entire life; still, like a mummy with my arms at my side. Once, I freaked my little sister out when she had to share a bed with me at a hotel. She told me the next morning, “Man, I thought you were dead. You freaked me out. You never moved all night.” She said I was casket ready.
But isn’t that how we’re supposed to sleep? Like a dead man? Like a log? Wasn’t that the point? Well, all that’s changed now and I’m officially a side sleeper and my left arm goes numb and doesn’t know what to do with itself. It’s just hanging off my shoulder that’s stuck under my left side and when I wake up in the morning, it aches like a rising. Stop and think about that a while.
The point is, a gift of GERD or a Barrett’s diagnosis means things have to change. A PPI isn’t the whole answer because those have side effects too. If you don’t change your lifestyle and eating habits, like banning eating within four hours of bedtime, you’re going to get reflux and end up with more damage.
My symptoms have improved, but I’m still learning all the ins and outs and diet changes that prevent flare ups. Check out Dr. Koufman’s books. She has several. I found her cookbooks and acid reflux books at the local library and checked her out on all her social media sites (I’m not saying I became a stalker, but close). Hope she’s not reading this.
I’ll share a quick run-down of the don’ts: no chocolate, caffeine, red sauce, onions, garlic (garlic-infused olive oil is okay), fried food, fizzy drinks (really, anything but PH water or water at a 7 ph is a no-no), including no alcohol, mint, meats (eat mainly fish), no fats (except a little olive oil), and… Do you really want me to go on? I’m getting depressed all over again, and I’m a therapist. It’s time for thought-stopping, so I’m going to have to go in a second.
For the most part, I’m getting used to the new diet and when I’m tired of drinking water, I blend watermelon and sip away. Sometimes when I’ve slipped up and eaten foods I shouldn’t have, I feel the burn and it brings me down, reminding me I have to stay on my toes constantly.
If you’ve had reflux, GERD, chest pain they can’t explain, and have had indigestion for years and you’ve been ignoring it, check out Dr. Koufman’s books. Hey, check out anybody’s book, but stop ignoring it. It’s not going away without some work on your part. Talk to your doctor (leave out how much you found out on the internet-Dr’s get high blood pressure when they’re stressed).
Take time to give yourself the gift of self-care through eating right, proper rest, along with decreasing your stress and avoid late night eating and drinking. Make those necessary life-style changes before your condition gets worse or you’ll be sleeping on a foam wedge, hiding funeral arrangements all over your house, and going to bed hungry like me.