Ensure and Pedialyte saved my life.
My experience with Achalasia.
I spent the entire existence of my childhood eating away my sorrows.
Luckily enough I had great food to choose from, being from New Orleans allowed that luxury.
Not that the choices were the best, but in NOLA flavor rules health anyway, anyday.
I was the kind of kid that would swallow their food whole or barely chew (kind of like a crocodile), eat undercooked meat, stale foods, and let’s not forget the candy.
The light of my existence was candy. Once when I was seven or eight years old, I ate an entire bottle of Flinstones vitamins because I thought it was candy.
Yes, in real life I ate vitamins that tasted like candy and could’ve possibly died of vitamin overdose. Just kidding.
But anyways, I was a human garbage disposal and never gained a pound.
I didn’t actually get to over 110pounds until after I was forced to get on the DepoProvera shot at the age of 16.
Which honestly made my food cravings worse and more intense than ever before.
5 years later I was 130 pounds and still was told that looked like I skipped meals.
But they had no clue what skipping meals looked like for someone my height until my condition settled in.
May of 2015 was the month my life began to change, I will never forget the first day I couldn’t swallow my food.
I was eating a banana on the way to work and almost choked to death.
I decided to write it off as the banana being too dense and spent the next twenty minutes breathing the clump in my chest down.
It was the most uncomfortable feeling in the world, feeling each particle slowly drop down my esophagus into my stomach.
And it only got worse from there be it chicken, rice, cereal, watermelon, or just plain water.
It became more and more difficult to swallow them over the summer.
To the point I would wake up, in the middle of the night, coughing up food and liquids that I thought digested earlier in the day.
To the point that I would regurgitate them all.
To the point that I told everyone I was vegan so that I would avoid the shame of having to eat in front of them.
It slowly destroyed me. It made me cry. It made me weak.
The luxuries of eating and drinking were taken away from me.
Social gathering were avoided, friends were lost, and so much weight.
I dropped from 130 pounds to 93 pounds over the course of the next 7 months.
The most annoying phrase that a person could say to me changed from
“you’re so skinny!”
“you’re so tiny!”.
I’d laugh it off most of the time, blaming on the vegan lifestyle and how New Orleans is a food desert, while screaming internal profanities.
If you’re thinking for a second I didn’t eat or at least try, you are dead wrong.
I was always starving. I was born a foodie.
Every single day I would eat as much as I can, hoping that something would stay down or at least the nutritional components would absorb into my blood stream.
Hoping that my prior amount of body fat hasn’t run out too soon.
I was frail and tethering on the verge of death every single day, while putting on a brave face.
My mask explored its full potential as I began delving into the world of modeling.
I figured this is the ideal body type that they make most sample sizes for anyway, why not?
I’ll tell you why, because each day only killed me slowly internally and now the responsibility of modeling knawed away at me mentally.
I put up a brave face the next 3 months and got some modeling work done until I began feeling faint more than usual.
This is when I said to myself “I don’t want to die from this”.
I started to see doctors about it and describe my symptoms:
- Tightness in chest after eating or drinking
- Difficulty swallowing solids and liquids
- Weight Loss
- Feeling like death
They would do blood work, but everything would come up normal except a few things.
Although, to them they weren’t at alarming levels to cause concern for someone my age.
The first doctor that I entertained was G.I. doctor named Dr. Thaddeus Temple, he gave me Ensure Enlive after every visit.
He would also always comment on my age and that I’m the only patient he treats who needs to take ensure that doesn’t have diabetes and is under 30.
After two months of visiting him, he recommended that I see a therapist because the condition doesn’t seem to be physical.
But the tightness in my chest was real, and most days the ensure didn’t stay down which is why I’m glad it was free.
He was truly concerned, but also did not have the answers I needed.
I dropped down to 83 pounds by June of 2016.
I fought myself up back to the 90's by August and started to seek therapy.
I did a good bit of research about antidepressants and the effects of appetite increase and weight gain.
I then solidified my excuse by telling myself, “You’ve been dealing with depression and anxiety your whole life. A little therapy wouldn’t hurt”.
But it did hurt. I was prescribed 50mg of Zoloft and it was added to the list of my worst experience’s in life.
I’ll be honest after the first three days of vomiting excessively and barely being able to walk or move it got better.
For a week the difficulty was less intense to swallow and i was able to keep almost all liquids down.
And then it returned. Like an old friend who once betrayed you coming back to dig deeper holes.
I continued treatment for two months, and decided to begin weening myself off of the government made drug.
The weening process was torture, of course, but I had become semi-numb to the pain I experienced daily.
Days that I didn’t regurgitate were celebrated and usually followed by 3–4 days of a closed esophagus muscle.
I ended up in the ER one day because I was weak and couldn’t stop throwing up.
My life stock of electrolytes, proteins, and nutrients were getting flushed down the toilet.
This day changed my life, the doctor took one look at me after listening to my list of symptoms and said:
“I think I know what you have, but we need to run a few tests first”
I cried my first set of joyful tears since 2014. There was hope for a cure.
He also mentioned I should accompany Pedialyte with my Ensure intake to replenish my electrolytes.
I’ll never forget what the nurse told me as I was leaving
“Calories and Electrolytes are all we need to survive, we don’t really need to eat food”
The next three months, I went through the process of seeing if I had true
Achalasia is a rare disease of the muscle of the lower esophageal body and the lower esophageal sphincter that prevents relaxation of the sphincter and an absence of contractions, or peristalsis, of the esophagus.
and not just
Difficulty swallowing (dysphagia) means it takes more time and effort to move food or liquid from your mouth to your stomach. Dysphagia may also be associated with pain. In some cases, swallowing may be impossible
It’s hard to tell the two apart without having these three procedures done.
- Barium swallow test
My Endoscopy came up clean and doubt began to settle in.
Leaving the hospital after the Endoscopy I figured it must’ve been a good day for my esophagus with them not finding anything.
I proceeded to go to Smoothie King to try out my luck, switching the ice cream for sorbet, milk powder for almond milk, and the bananas for raspberries.
Health conscious choices became my best friends through this time, because they put up less of a fight.
Or maybe they just irritated my esophagus less.
Nevertheless, I bing drank Smoothie King on my good days.
The next day was my Barium Swalow test, I was terrified they wouldn’t find anything.
As I walked up the stairs to the X-ray department of the hospital, I felt a sharp pain in my chest causing my entire body to overheat.
Not again I thought, this type of pain was crippling.
I found myself laying down on the lobby floor sighing in pain around a bunch of older patients that looked at me as if I was being too dramatic. I wasn’t.
My chest felt was stinging and my body was too weak to sit up straight like a normal human being.
The floor was my safe haven. The lady at the front desk had to get my ID and insurance card out of my purse and bring the paperwork to my floor hugging body.
She dared to ask if I wanted to hold off on signing my consent to the swallow test.
I signed it and curled back into a ball, in too much pain to cut or roll my eyes at the question.
The technicians assistant came out with a wheel chair and helped me onto it, and proceeded to lead my pained body into the X-ray room.
Now from my understanding, the barium swallow test is suppose to have four parts to test the flexibility of the esophagus.
- Part One — Barium Swallow in small portions. This is where the X-ray has the best view of the esophagical spincture at the bottom
- Part Two — Bread Test
- Part Three — Liquid Test …maybe?
- Part Four — Marshmellow Test
I don’t really remember them all because I was too busy failing the first test.
The barium did as every other liquid would on a bad day, but this time I could see how small my esphogaus was at the bottom.
I finally had proof that it wasn’t mental and my condition, as rare as it is, was real.
The technician didn’t bother to do the next steps on me, it was clear my esophagus was damaged.
But even with a X-ray proving the extremity of my condition.
I still had to have an Manometry.
I honestly shudder thinking back to my day in that room. The technician standing beside me exactly what she was about to do to me and how much pain to expect.
“I’m going to take this tube and stick it up your nose and slowly move it down your throat and then down your esophagus. And then I’m going to need you to drink this liquid so that I can monitor how your esophagus muscles are working”
“Unfortunately I can’t give you any anesthesia because I need you to be in control of your swallowing”
I can still feel her slowly inserting the tube down my nose, that part wasn’t so bad it kind of tickled.
The tube continued to pass my gag reflexes, and that’s when the problems started.
It took everything in my being to relax it enough for the tube to pass through, but after that point their was no going down.
I instantly projectile vomited through my throat and nose in the same instant. It was humiliating.
I told her to take it out, she wanted to try again. I let her, and the same thing happened.
I couldn’t go for a round three, my throats was sore and my body was now on the defense against that plastic tube.
Good news followed as I was crying hysterically with snot vomit dripping through my nose.
She patted my shoulder and told me,
“You should be proud of yourself. I do this procedure to grown men and they cry like babies and won’t even let me do it a second time. You’re strong and you shouldn’t worry every 1 in 2 people can’t get the tube down, and those are always the ones with true achalasia”.
It was final. I had a rare condition that affected 1 in every 100,000 people. Yay me!
After the results were in, I was directed to see a Dr. Christopher DuCoin at Tulane Hospital.
My surgical savior, he walked into the room with a wide smile and bright eyes. Cracking jokes to lighten the mood, and told me of his newfound engagement to his fiancé he’s known for 22 years.
“He’s literally known her as long as I’ve been alive”, I thought to myself. The thought relaxed me for some reason, or maybe it’s the number 22. But I’ll discuss that on another story.
He then proceeded to tell me I had two surgical options:
- The Heller Myotomy
- The Peroral Endoscopic Myotomy (POEM)
I was relieved to learn that the POEM was a internal procedure. My young flesh was not ready for surgical scars just yet.
DuCoin assured me that it is the most effective and I will be required to stay a minimum of two days in the hospital after the surgery.
I was excited, my only request was that it be performed before my birthday on December 22. He assured that it will be done before then, and it would’ve been done sooner if he wasn’t getting married the following week.
My soul was filled with hope again. I would be able to eat again. I could finally be a productive member in society once again.
My surgery was scheduled for December 13, 2016.
DuCoin walked into the room with his medical students postsurgery with the same charming grin. Now more tan and with an unkempt beard after his honeymoon in the Islands. He says,
“Did you have sunflower seeds recently?”
I tell him yes, two days ago on a salad.
“Well I’ll tell you one thing, you definitely had achalasia. I spent the first 30 minutes picking sunflowerseeds out of your esophagus before I could even start the procedure”
I cringe at the thought of the two day old sunflower seeds never moving, but I can’t help but laugh at his statement. My esophagus was clear and I would be able to eat soon.
I spent the rest of that day doped up on morphine and using a breathing tube to get any access water out of my lungs. I faded in and out of sleep, while the nurses checked my heart rate almost every hour and kept asking how many times have I peed.
The next morning after a post surgery X-ray. I was allowed breakfast, but it wasn’t what I expected. It was beef broth, jello, and water. Delicious. Am I right?
I hesitantly sipped the broth and relaxed my mind of the fearful thoughts brewing. It went down, completely without any tension. I was elated. My empty stomach could finally process a meal even if it is only liquids.
The next two weeks I stayed on a liquid based diet and soft food diet. By Christmas, I was ready to give the real food a try.
I was finally able to enjoy a Christmas Meal after two years.
The last Christmas holiday my uncle started a rumor in my family that I was anorexic, it was disheartening. But it showed me something about people.
They fear what they don’t understand.
It still doesn’t make it right for him to accuse me of having a real mental health issue that is not to be joked about or thrown around lightly, but I forgive him.
I also forgive the friends that I lost, who didn’t love me as much as they pretended too.
I also forgive the doctors who lacked the knowledge to help me.
I also forgive myself, for not valuing myself enough in the beginning and settled for suffering.
Fin. If you enjoyed the reading please tap the heart below!
Thank you for listening to my story.