I Have Achalasia and Food Gets Stuck in My Throat
The first time that food got stuck in my throat it was in the middle of the night. But I had no idea that what I was experiencing was a swallowing disorder that I had been suffering with for years–this was simply the first time that the swallowing problem manifested.
And it wasn’t even food–it was water.
Something so fluid which has always slid down with ease, it made no sense.
The nightly chest pains that I experienced were raging in my chest, and I stood up to move around, hoping that a swig of water (which usually worked) and a quick stretch would ease the discomfort.
I lifted the cup to my lips to take a swig, only to feel the icy cold water just……sit there.
I vaguely remember thinking to myself, “What was that??”
Although my trouble with swallowing started that night, this story and history of this swallowing disorder called achalasia actually started 4-5 years ago but was misdiagnosed, as it often is.
For 4-5 years prior, I was plagued by chest pains that doctors scolded me for not addressing with anti-reflux medications. But these chest pains never felt like what others often described as a burning sensation. Instead, these chest pains felt like spasms that would often come on with little notice between my ribs in the center of my chest, radiating to my back, and sometimes I could feel it in my jaw and ear. Sometimes the spasms would get so bad I would feel light-headed.
In those moments, I would scurry to the fridge for water and hurriedly gulp it down like a desert survivor getting its first drink of water after a long drought, waiting for that moment of relief when the chest pain would subside after a few moments.
Soon I learned that leaving the house without a bottle of water in tow meant potential agony if a spasm erupted in my chest and I had nothing to wash it away. Oh, the horror! With my drink in hand, I was armed and ready.
Dietary changes helped drastically. When my diet was filled with “carb-y” pizza and snacks and other gas-producing bad food, I noticed that the chest pains would flare up multiple times per day and definitely at night.
However, when I reduced carbs, there was less gas. And less gas meant less pressure on the muscle located at the bottom of my esophagus where I was feeling the spasms (known as the lower esophageal sphincter–LES). The LES acts as a barrier between your esophagus and your stomach. I figured my sphincter was just a bit more sensitive to the pressure caused by gassy foods.
My plan of attack was to simply eat a protein-rich (18 years a vegetarian) diet and life would be swell and chest pain-free. Great! And if I lost a few pounds along the way, sweet!
Why Is Food Getting Stuck in My Throat?!
After water got stuck in my throat, gradually over time I started noticing that other food started getting stuck in my throat. Not enough to cause me to choke or to aspirate into my lungs or to be alarmed. But things didn’t feel right. There was something there that needed to be investigated.
In April 2016 I had a barium swallow done, which is a test where you drink a chalky drink while they take an x-ray of the drink going down your esophagus. People with achalasia will usually have something called a “bird’s peak” because of the narrowing of the esophagus and you can see on the x-ray where the chalky drink just sits there and doesn’t go down.
Mine…?
Came back normal.
(Thankfully I’ve got email copies of our exchanges to remind me that it took 2 years to get a proper diagnosis. Could that have been 2 years that I could have had a more normal life, without chest pains and difficulty swallowing?).
The Dr. emailed me results and said, “I’m happy to report your barium swallow was normal.” Yet, when I question him why I feel like I can’t swallow properly, he responded back:
No, this wasn’t globus hystericus.
And I told him so.
I’m even the first one to mention a “motility disorder.” All I had to do was Google “food getting stuck” and whaddya know? Google diagnosed me as having a motility disorder. I had to school my Primary Care Physician:
I then asked my doctor to refer me to a gastroenterologist for a consult. His recommendation?
Peppermint.
Yes….peppermint.
So What Is Achalasia, Anyway?
I’m not a doctor and won’t pretend to be one.
But achalasia (pronounced a-kah-LAY-shuh) is a rare swallowing disorder that means “without relaxation.”The problem is that that muscle I mentioned above, the lower esophageal sphincter (LES) at the bottom of my esophagus, doesn’t open when I swallow the way it’s supposed to open. It also means that the contractions that help pass food along properly through the esophagus stop working. Basically, the nerves in my esophagus have died (or are dying). (Click here to learn more about achalasia).
I’ve seen some websites report that only 1 in 100,000 has achalasia, but I’ve seen other reports that estimate it higher at 8 – 12 people per 100,000 have it.
Who knows.
I just know that I’m one of those people.
What Causes Achalasia??
No one really knows exactly, but it is likely an autoimmune response to a virus and some people like myself may have been extra sensitive or pre-disposed to respond to the virus this way.
I honestly can’t tell you for sure.
There’s no cure for it, but thankfully, there are some treatments for it that give achalasia patients their life back and allow them to eat “normally” again (albeit with eating slower and taking more time to chew up their food).
I Developed Achalasia Years Before I Knew What It Was
It was likely 4 or 5 years ago that I started having chest pains. I’d be up late at night, blogging on my DIY blog, and would sometimes feel these horrible chest pains that, later, someone said could be GERD (gastroesophageal reflux disease). It didn’t feel like GERD or burning acid. It felt more like a spasm that would come on suddenly and the only thing that would help it go away was drinking or eating something.
I’d often rush to the fridge for relief, and later, learned to never go anywhere without a drink or snack to eat if I needed it at a moment’s notice.
Endoscopies, where they’d take a camera down my throat, proved useless. They only told me whether or not I had acid damage in my esophagus (I didn’t), but it couldn’t tell me that the nerves were dying.
I had that barium swallow (the chalky drink) in April 2016. Despite mine coming back normal, it couldn’t explain the difficulty with food and water getting stuck in my throat.
It wasn’t until December 2017 that I had a manometry test (where they stick a probe up your nose and down your through into your esophagus to measure how much pressure exists) that I was confirmed as having achalasia, Type 2. The bright side was that Type 2 usually responded best to treatment. Hooray!
So This Is How Achalasia Affects My Life
If you’re thinking, “Ugh, that’s horrible!” you would be right.
But thankfully, my symptoms are bearable, but I’m only able to eat about 25% of what I normally eat. Food that used to take 10 minutes to eat now takes about an hour to eat.
When I eat, since that sphincter doesn’t open properly, food can get backed up in my esophagus causing discomfort. And there are no muscles pushing the food down. My best friend is gravity. But over time, all that food backing up in your esophagus can cause it to enlarge and cause damage from food just sitting there in your esophagus, fermenting.
Some people actually throw up (willingly, at times, just to get relief from backed-up food). Often times women are diagnosed with anorexia as if it’s all in “their head” because they’re throwing up and losing weight. It’s because many doctors don’t know about this disease and don’t understand it.
I have lost weight, too, in fact.
It’s a horrible “joke” to make, but this has been the only bright side of having achalasia: at least it’s helped me lose those last stubborn pounds I could never lose. HA!
But, I’m joking. Clearly. Because it’s sad the way people can waste away with this disease before they’re properly diagnosed and treated. I force myself to eat, despite not having much appetite. I want to avoid the discomfort. And seeing that I’ve lost lean mass isn’t good weight loss, despite the 5 pounds I have lost in the past month.
Thankfully, I don’t throw up, but often times, when I eat, the nauseating sensation to throw up is there while I wait for my sphincter to open up and allow the food to pass through. What causes the sphincter to open up with the weight of the food pressing on it. Eventually, if I left this untreated, the sphincter could stop opening altogether and then I’d need a feeding tube, perhaps. But I’m not there yet, and with treatment, I can afford that.
I’ve learned how to chew slowly until the food is liquefied before swallowing and this has helped me out tremendously! But now I’ve got an important decision to make.
I Need Surgery For Achalasia. But Which Surgery Do I Get??
Thankfully, there are treatments (no cures) for achalasia. And the most resolute treatment is surgery. But none of the treatments come without consequences. And unfortunately, the biggest consequence can be acid reflux.
Years ago, a physician developed a procedure called the Heller Myotomy. I won’t get into all the details, but present day, it basically consists of cutting that tight sphincter which will allow gravity to pull food through to the stomach, and then wrapping part of the stomach around the esophagus to help prevent acid from coming back up where the muscle has been cut (this is called a fundoplication). Sounds gruesome, doesn’t it? Even worse, it’s done laparoscopically through the abdomen. It’s safe, but who wants scars on the belly that can take weeks to heal? I guess I’ll take scars over starving! 😉
The newer procedure, called a POEM, which is about 10 years old, can be done right down the esophagus. No cuts in the abdomen needed. The dr. cuts the muscle but typically doesn’t wrap the stomach. This leaves a high percentage of achalasia sufferers exposed to acid reflux and having to sleep propped up on pillows for the rest of their life. It also means there is a greater risk of needing to be on acid reflux meds for life. And that presents a whole different issue of health risks!
The bright side (because I love the bright sides of everything!) is that both of these surgeries offer immediate (and many times, long-lasting relief for many years. Imagine going out to eat and being able to chew and swallow without my mouth watering, as if I need to vomit? Oh, I can’t wait for surgery!
Since finding this Achalasia support group on Facebook, I have heard some terrifying stories of people who have had the newer procedure, POEM, and ended up with an esophagus so damaged and eroded that they were >thisclose< to needing their esophagus removed because it was so badly damaged due to acid and surgery. That’s a horrid thought!
After hearing their stories and heeding their warnings, I’ve decided to get the Heller Myotomy done. The only hesitation I have is that my family has Kaiser insurance and I really don’t know if the Kaiser surgeon to whom I have been referred has enough experience doing these surgeries. I worry he will wrap my stomach too loose, leaving me with acid seeping back up my esophagus. I worry he will wrap my stomach too tightly, leaving me with dysphagia (difficulty swallowing).
If I had better insurance, I could have the option to go to any doctor of my choosing. But unfortunately, I’m bounded by Kaiser’s network. 🙁 I can only hope that the surgeon will be well rested the day of my surgery, well-studied, and committed to the best outcomes for me.
Facing a health issue where you’re conflicted about which direction to move is difficult. Facing a health issue that can cost thousands (my surgery will cost about $3,500 out of pocket; the cost of the surgery is roughly $20,000 – $30,000) is scary financially for many people. Thankfully, I’ve socked away enough money that I can afford it, but it makes me question what would happen if there was an even bigger health care cost due to another unforeseen diagnosis, accident, etc. It’s why this country needs good health insurance for all. Being at the mercy of an insurance company that can also dictate where you can do and when you can do truly sucks, too.
But again–the brightside: at least I have insurance. What about those suffering from diseases such as achalasia that don’t have access to medical care??
Anyhow, I can only put my faith in God (and the surgeon!) that all will turn out well.
Surgery will likely be in the next month. I’m looking forward to being able to eat “normal”…..well, as “normal” as an achalasia patient can eat without getting food stuck in the throat. 🙂
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