“I did not become a vegetarian for my health, I did it for the health of the chickens.” -Isaac Bashevis Singer
Sometime in 2008 before I became a vegan, I was sitting at my desk in the office and started having the most intense chest pain. Right in the middle, behind my sternum. Remember the Alien movies? It felt like one was going to burst out of me. All I could do was sit hunched over, wondering what was happening and hoping against hope it would stop. The pain must have been written all over my face as another employee asked if I was ok as he walked by. I nodded yes and he continued on. It finally passed and I didn’t think of it again. Until I felt it on my long commute home on another day.
Fast forward to late 2012, a couple of years after going vegan, I started having the chest pains again. Heartburn, which I had never experienced before, became a regular occurrence. I began to have some trouble swallowing. I’d feel like food was stuck in my chest. Getting up and walking around would help in getting the feeling to go away. I started eating less. When I did, I had to have lots of fluids to help get the food to go down. Over the course of a few months, it stopped staying down. Running to the bathroom during meals became a regular thing. When I could keep anything down, I was full after only a couple of bites.
Finally fed up, I made an appointment with a doctor. After answering a few of his questions, he told me I had acid reflux, suggested I take over the counter Prilosec and sent me on my way. It did not help. I continued to get worse. I went back to the doctor and ended up with a prescription strength version. Didn’t help. I was still getting worse. I wasn’t able to swallow or keep anything I did manage to swallow down. I was starving, wondering what was wrong and tired of vomiting everything I tried to eat.
Since the doctor was no help, I went to the emergency room one night. I hadn’t kept anything down for days and was starting to loose quite a bit of weight. They had me do a barium swallow for an x-ray. Naturally since I couldn’t keep anything down, most of it ended up in the trash can. Eventually, they told me it was acid reflux and to keep taking medicine for that. Medicine that did not help. I began researching alternative remedies and foods I could eat that would help. None of those did anything either. Driving and even riding in a car, going shopping, working, everything became a battle to not throw up. I had to run to the bathroom more and more. I continued to lose weight.
I made an appointment with a different doctor. She barely looked up from her laptop and recommended I see a specialist. I got a pamphlet and made an appointment with one of the gastroenterologists listed. I chose a grandmotherly, no nonsense Columbian woman.
And thus began the string of endoscopies I would endure. Two were done two days in a row, a night in the hospital in between. I briefly woke up during the second one. The doctor and nurses were trying to get at something orange lodged in my esophagus. I heard them exclaim it was a piece of carrot as I passed back out. This was now spring 2013. I last remembered eating carrots around the holidays.
After each endoscopy, I would feel a little better. I could eat and keep food down. But it was always short-lived. Soon, I would be back to not even keeping my own saliva down. I remember looking in the bathroom mirror during a round of vomiting and breaking down in tears. I was getting no answers from the doctors and nothing I tried was helping me one bit. I had lost about 25 pounds and I looked like a skeleton. I had to buy new clothes as my old ones were all but falling off of me. I bought shorts that were a size 6. I’m on the tall side and average weight, hovering around a size 10 or 12 depending on the shop. Even when I was in my teens, I was never a size 6! Mainly because of my height and I don’t remember vanity sizing as being as prevalent of a thing in the 1980’s as it seems to be now.
In July of 2013, I went in for what would be my last regular endoscopy. My grandmotherly doctor had removed so much impacted food, she sent me to the regional hospital for testing and to be looked at by other specialists. She was concerned I was at risk for developing aspiration pneumonia.
When the EMT’s came to transport me, they nearly threw me on to their gurney. They were used to moving much heavier patients. I made a joke about it to ease the tension, but it’s a sad testament that they are that used to moving those who weigh a lot more than I did at that time.
I ended up staying in the hospital for 2 days, getting sustenance through an IV. My throat was raw and sore from the vigorous cleaning earlier in the day. The nurse that night added an opiate pain killer through my IV to help get me through the night. I can understand why people can fall into an addiction for it.
The next day was a lot of waiting in between 2 tests that another specialist had ordered. As I was being taken down for the first one, a hospital social worker stopped for a quick chat as I would probably be able to eat food the next day. I mentioned I was vegan. Naturally, the response was something about protein although in all honesty I can’t remember much specifically. It was one of those reactions that mean well enough, but can still make us vegans roll our eyes a bit.
Anyway, the first test wasn’t too terrible. I had to swallow barium while standing behind an x-ray machine. From my perspective, I was able to see a screen showing me the same thing as the technician. My esophagus was extremely wide but narrowed to a point at my stomach. There was barely a trickle of the liquid getting through, most of it pooled back into my gullet. Yikes. No wonder I had lost so much weight.
The next test, esophageal manometry, was rough. This one involves a flexible tube roughly the diameter of a pen being inserted up one nostril and down through the esophagus to the lower esophageal sphincter (LES). It measures movement of the esophagus and LES. Unfortunately for me, the tube got stuck in the first nostril the nurse tried. She had to pull it back out and try the other one, which went a bit smoother, but still not pleasant at all. For the next 15-20 minutes, I had to swallow liquid and then some jello-like substance in order for the machine to record what was going on whenever I would swallow liquids and solids. As I was being wheeled out of the exam room, I looked at the results on the screen and asked what it meant. The nurse at the machine told me I had no muscle movement. Wait, what? What is wrong with me?! I was taken back to my room for the night.
The next morning, a new doctor came up to go over my diagnosis. Achalasia, a chronic condition in which the muscles and nerves of the esophagus no longer function. The loss of the nerves causes the LES to never relax and let food enter the stomach. It’s pretty rare as only about 1 in 100,000 are diagnosed annually. I had all of the symptoms: weight loss, inability to swallow (dysphagia), regurgitation and chest pain. The cause isn’t fully understood or known, but the latest thinking is that it is an autoimmune disorder as the body is essentially attacking the nerve cells of the esophagus.
There is no cure for achalasia, only treatments to make living with it easier. I was given 3 options: botox injections, pneumonic dilation or a Heller Myotomy. I chose the dilation, which is an endoscopic procedure that expands the LES to allow food to flow into the stomach. Once I had the dilation, I was FINALLY able to eat relatively normally again. I gained the lost weight back, with a touch of dismay with the last 5 pounds of that coming back too.
I still have trouble swallowing, but I manage. I also get excruciating chest pains (esophageal spasms) every so often. Carbonated drinks help ease the pain. Taking a magnesium supplement when things get bad helps a lot.
What does this long-winded story have to do with veganism? Well, vegans can get sick with chronic illness too. Now that I know what I have and know the symptoms, I’m sure that it started to appear back in 2008 but I didn’t know it at the time. A vegan diet neither caused my illness (it started before I became vegan) nor has it helped since I’ve been vegan. There’s a lot of talk online as well as numerous documentaries and literature that tout the health benefits of a vegan (whole foods, plant-based) diet. There are a lot of benefits to a vegan life. There are many people who have been helped and been able to reverse their conditions, but it is not a magic bullet. I am a testament to that. I’ve read conversations about veganism and health that become admonishments, placing the blame on the person with an illness as if it’s their fault for not eating what others think they should be eating. I’ve read a lot of shaming too.
I am not going to stand for any that and will not hide that I have a chronic condition. I will not be shamed into submission either. As an ethical vegan, it’s more about the animals than health anyway. I use oil and I’ll eat alternatives – such as the new So Delicious cheese shreds, Field Roast sausages and anything Tofurky. I am a sucker for new vegan products!
If you’d like to learn more about rare disorders, check out the National Organization for Rare Disorders. For more information and resources on achalasia, head over to Achalasia Awareness Organization‘s website.