This is something that I originally posted on my facebook, and I thought it would be alright to put here as well.
So I've been contemplating coming out with this for a long time. Some of you already know what I've been experiencing for the past few years, while the majority of people I've left in the dark. Why now, of all the times, dare I choose to finally be open about my current tragedy is that I see that it is my calling to spread awareness of the matter. So here's my story, and I apologize for this being really lengthy:
I've been healthy all of my life, with what I call an adamantium immune system, never really getting sick. Hell, if I felt even in the slightest under the weather, I would milk it for all it's worth just to get a day off from school. I used to say I've had it pretty easy, even when I would face adversity for being too weird, too quirky, too quiet, even when I would be extremely critical of myself and be overly self-loathing, I would still say I had it pretty easy.
I never really had any crippling injuries, if anything, I had terrible stress-induced back pain. I've never broken a bone, never dislocated anything, never anything serious. I still freak out when I so much as stub a toe.
18 years I have been perfectly healthy, 18 years I felt like my life wasn't too challenging even with what I've experienced, and 18 years I realized that life is meant to be that challenge, and I thought enough that I was facing the worst, after having lost my beloved Uncle Keith and my cat Marty. A wise woman once told me that everyone has something. On my 18th birthday, I found that something, that was more than anything I've faced.
It wasn't until this past summer that I found out that this something is named achalasia.
You see, at this time, I had been having really bad anxiety since I passed out (and got a concussion) in my Psychology class, so I was constantly on edge, with endless intrusive anxious thoughts. That lead me to act out, which lead some events to transpire that ended with the most stressful situation of my life, which I thought for the longest time was the cause of all my future troubles. Just a few days before my birthday, in this stress-filled state after having an argument with my dad, I tried eating dinner, but when I swallowed I was in intense pain, and the food was stuck. It's hard to describe something that isn't seen, but I knew damn well that this wasn't normal. It was hard to breathe, I felt like I was choking, but it wasn't blocking my airways so I wasn't technically "choking". It felt like I was extremely full, but it was way higher than where my stomach is. I drank a lot of water, and I felt the coldness just collect, like nothing was going anywhere. Then with sharp pain, I felt it slide down and stop again just before where my stomach would open. I spent the entire night drinking and staying upright, hoping with time it would pass. The next day, it was still there, so I forced myself to vomit. The chunk flew halfway up my throat but wouldn't come out. It felt like it wouldn't go out either end, so I started to panic even more. I ended up going to the hospital, where they injected me with something designed to relax my esophagus, which actually helped it move. They diagnosed it as Food Bolus, aka "Steakhouse Syndrome", where food for whatever reason, mainly meats, gets stuck in the throat.
So, after that I thought I was ok, as long as I stayed away from meat for a while and stayed extra cautious with my chewing/swallowing. I drank only liquids until my birthday, so I could be more healed to enjoy my special meal. That didn't happen. I ate some crab soup, half-assedly avoiding chunks, and it was hard to breathe again. Well, long story short, everything I've tried to eat since then has gotten stuck, and I've had the same experience and feeling every time I would try to eat something with chunks. Needless to say, I didn't know what the hell was wrong with me.
I used to think it was all anxiety, or that it was all in my head. I was on Celexa for about a month or two, and all it did was make me not care about anything, as well as mess with my memory. I never stopped trying to eat, even though I knew it was a living nightmare to try to force something down, with every battle session ranging from a few hours to a couple of days, I was still determined to eat what I love in small moderation. I quit Celexa cold turkey when I gave it time and got a smidge of bread crumb stuck, which probably wasn't the best idea, because I'm assuming based on how I acted afterward that it messed with my serotonin balance. I concluded that it probably wasn't anxiety or stress, because even in my most carefree, relaxed state, I still would choke equally as bad as I did when I was stressed.
My mom decided to finally take me to a gastroenterologist, who might be able to shed some light on what was happening to me. I had a barium swallow, where they made me take huge gulps of barium on their command, which I couldn't handle and ended up spitting it back up. They said it was inconclusive. My doctor prescribed countless medications to attempt to remedy my symptoms, but none of them worked.
My family had a very difficult time believing me, and we would constantly argue about what each of us thought was happening to me. It was just like the icing on the cake. I had no relief from my symptoms, as well as no relief from argument.
My doctor felt it was finally time for him to go in there with a scope to see what was up. He gave me an Upper Endoscopy, where he preceded to dilate my esophagus with a balloon. I woke up and the first thing I noticed was how much easier it was to breathe! For a couple of months, I was actually able to eat normally, like I even ate meat and was perfectly fine. However, when I started my first semester at RIT, I noticed the effects rapidly wearing off, and I was back to liquids. I fell into a deeper depression, where my symptoms became even worse, and I noticed these white strands would form in my mouth every morning that I would have to pull out. My mucus was a million times thicker, I've almost choked on balls of mucus countless times before, as well. I was malnourished, to where I would have headaches whenever I would try to think. I would have this scratch in the back of my throat that made me have terrible coughing fits. My hands and feet started freezing and going numb, I actually thought I was developing diabetes on top if everything. I still had no idea what the hell was happening to me. All I knew was that the balloon dilation worked, and I needed more, and if I didn't get it, I knew that I wanted to die.
Winter break, I was going to counseling in attempt to go at it from a psychological disposition, but nothing physically changed even if I had progress. My doctor took me in for another test, the Esophageal Manometry. For those of you who don't know, this is terrible: they numb your nose, and stick a catheter in your nostril and all the way down your throat. I couldn't do it because once you gag befor they get it in, your throat won't let it through. So, they had the idea of having it in me while I was under anesthesia for esophageal dilation. So, just 2 days before returning to college, I was able to have my esophagus dilated again, and the results of my manometry were interpreted as nothing wrong.
My second semester started out strong, but I was more so cautious about eating. The dilation lasted for an even shorter time, and I was back to liquids or just forcing everything down and letting the fight commence. At this point, I can honestly say I was very suicidal. I was getting sick of the pain, and since everything was inconclusive and not helping and there was no official diagnosis other than the vague term dysphagia, aka "trouble swallowing", I saw no light at the end of the tunnel. I am eternally very sorry for everyone who I love who watched me do that to myself, who saw me self-destruct.
In turn, my health was even worse than before. It wasn't until over the next summer that I finally got some clarity and finally found some hope. We went back to my GI doctor (my mom thought that he would say there's nothing more that can be done, get out), who said that he may have misread my manometry results. He referred us to a esophageal motility specialist in Philadelphia, who would have a better idea as to what's going on. We pulled some strings and by some miracle managed to get in there within the next week I think. When he had a glance at my results, within a minute he asked me about my symptoms, mainly in a way like "Do you have white strands of mucus in your mouth? Do your hands and feet go numb? Do you vomit a lot (no, but I would burp every 5 minutes of my life since my 18th birthday, I shit you not)?" He flat out described every symptom I had when he told me that I had stage 1 achalasia.
Most of you have never heard of achalasia. I myself had never heard of it until I decided to do some research back when I didn't know what I had. I distinctly remember seeing an xray of a barium swallow, where basically it shows that the throat is extremely stretched out as it gets closer towards the stomach. I remember reading about how it is not only trouble swalloing chunks, but with time of being untreated, liquids become a problem. That being the first thing that came to mind, I became white with fear. This was much worse than I thought.
Achalasia is a rare disease, it is unknown where it comes from and who it manifests in, but it affects people of all ages. What happens is that the Lower Esophageal Sphichter, the entrance to the stomach, barely opens, which prevents food from entering the stomach, allowing it to get stuck, and when food gets stuck, the throat stretches out in that area, and there is severe nerve damage to the throat. When the throat pushes food down, it is called peristalsis, which is what people with achalasia lose. We rely on gravity to swallow. The kicker is that while there are short term treatments such as dilation and botox, THERE IS NO CURE. The only longer term treatment is surgery, which only helps manage the problem better. Another thing is that with achalasia, we are at higher risk for throat cancer.
My doctor's first course of action was to give me a Botox Injection into my esophagus, which is meant to last anywhere from 3 months to a whole year, which was chosen purely because I was a week away from returning for my second year at RIT. Unfortunately, I was the unlucky one where I was able to eat for barely even 2 weeks, which is when I actually started being incapable of swallowing my own saliva. I literally had to rub my throat to even potentially push my saliva down. I thought I was going to die, because at this point I couldn't swallow ANYTHING! I had to spit instead of swallow. I almost was completely dehydrated. I had no choice but to go back to Philadelphia, where I would undergo the main surgery that would help, but not fix, as there is no cure.
At the hospital, I was constantly questioned by countless doctors, since this disease is so rare and unknown, that many doctors were even shocked by my experience. I think I may have also been part of a case study, which would make sense. Before I could have this surgery, however, they made me have another manometry, which I was actually able to survive (with nonstop puking, of course). This one showed that I had no peristalsis whatsoever, which proved that I had full-blown achalasia. The surgery I would receive that would give me hope is called a Heller Myotomy, which they cut the muscles of the lower esophageal sphincter, preventing it from really ever closing, which then they would do a Funduplication, where they wrap a portion of my stomach around my throat to prevent reflux, so I wouldn't develop yet another esophageal disorder. So no matter what, whether or not food will enter my stomach would no longer be a concern. My surgeon was excellent, she was bold and confident that I will be able to eat normally again, however I will have to be very cautious for the rest of my life.
You see, I was still miserable, because I was afraid that since all of the other treatments that I've had have failed much sooner than expected, I wasn't too optimistic about the surgery. I was scared, thinking where the hell do I go when this fails me? I don't want to live off of a feeding tube. I'd rather not get my throat removed just yet. It's been a slow process of reintroducing food into my life, and at this point it's a matter of process and and elimination of what I can and can't eat, which I do have to find out the hard way. For the most part, I am still living off of nutritional shakes. And as for my deathwish, that has evaporated (since I've hurt the people I love) and has been replaced with the will to fight for a cure, and to spread information about achalasia. I have become a more hopeful person, as I've recently decided to screw my head back on straight, and conclude that this isn't going to stop me from living my life, from achieving my dreams, and from being me. People who have this disease are often misdiagnosed as anorexic or bulemic or anxious, and for those who have been diagnosed as such and have not gotten healthier, they have no perception that the problem may be phyisical.
As for a side note, if it weren't for this terrible disease, I wouldn't have gotten to know the man I love, and I wouldn't trade it for the world. Hell, if I didn't have this disease, then we'd be one step farther from the cure.
Please, spread news about this disease, because you could be saving lifetimes of torture for people you care about. Achalasia won't kill you, but it is absolute torture, and I wouldn't wish it on anyone.
Once again, I apologize for this being a long read. By all means, if you so wish, do some research for yourself, and inform people of achalasia. Thank you!
If you have any questions, feel free to ask, since I've left out a lot.
Update 1/12/17: My dad is showing symptoms, but he's in denial. And of course, he waited until now of all times to tell me "Oh yeah, grandpa had similar swallowing issues, he just thought he forgot how to eat". Thanks, dad. Now I'm scared that, since this appears to be a more genetic issue than autoimmune, I'm gonna watch my family experience this. And my kids will get this someday. Hopefully by then, there's a cure, but this just wants me to help people get diagnosed and be aware more so, for the sake of everyone in my family. They often thought it was heart trouble, but whenever we choke, the pain we experience imitates that of a heart attack, which makes sense when my dad was admitted for near-heart attack and was found to have no blockage.
Here are the symptoms that I've experienced, that alone may mean something else, but the sum of the parts can very well be Achalasia:
-Mucus that never goes away, regardless of weather or season, getting worse over time
-White mucus strands that form in the mouth, mainly along the gums
-Every episode, pain that radiates from chest to jaw, and with air bubbles (in my case) it shoots across my left shoulder
-Shortness of breath, lightheadedness
-Incapability of taking deep breaths (feels like they're not reaching the stomach, stomach doesn't move when you breathe)
-Constant feeling like there is something in the back of your throat, with the urge to cough
-The feeling of fullness in a place much higher than your stomach, pain and pressure in your throat
-When you swallow a liquid, it is accompanied with a gurgling sound, which sounds like a "clogged toilet/sink"
-Extreme coughing fits when you lay flat
-Constant burping/vomiting/heaving when you swallow anything, usually you have the urge to cough if you eat too fast or something that would get stuck
-Feeling like what you swallow isn't moving down (pain, pressure, still taste it a long period after swallowing), NOT TO BE CONFUSED WITH THE "LUMP IN THE THROAT SENSATION"
-Poor circulation in arms/legs/hands/feet, Raynaud's disease (blood vessels in extremities-- hands and feet-- don't open properly when exposed to cold temperatures, leaving the extremities turning reddish, purplish, and whitish colors; numbness with either no blood or too much blood)
-BOTH liquids AND solids are troublesome to swallow; liquids are harder to swallow the longer you've been experiencing achalasia
-Constant chest pain, feels like tightness (tighter the worse it is)
-When you swallow a large amount, feel top heavy until it empties into stomach
-It takes a bit of time for liquid to reach your stomach
-When you have a vomiting flu-like sickness, the vomit sits in your throat until you can either swallow it or puke it up (I thought I would get it in my lungs and die, it was just sitting in the spot that triggered my gag reflex and I couldn't breathe, I just couldn't stop heaving and gagging)
-Some intestinal issues, since it is affecting your sphincters (and I think achalasia can take over the intestines as well, though that may be classified as a different disease)
I will add more as I think of things, thank you
Note: You can donate to the Achalasia Awareness Organization on Amazon smile, whenever you purchase something, a portion will go to the cause without any additional cost to you (smile.amazon.com)
Update 2/17/17: I'm still living on a complete liquid diet, I might actually be one of the few where the Myotomy isn't as effective. They said if the Botox worked, the Myotomy would work... hah yeah. I'm getting concerned that I may either have a hole or something else wrong with my throat, because it doesn't seem like achalasia would normally affect much below the Upper Esophageal Sphincter, which is near where I've been getting food stuck lately. I tried swallowing some avocado the other day, thinking hey it's soft and such I'll be fine, and well it was stuck in that higher up spot for around 2 days. The mucus strands are back, I'm assuming it's because I'm back at RIT and colder weather. I keep getting really bad anxiety attacks whenever I watch people eat. Sometimes I dream about eating, and I hesitate because I don't remember what it feels like to swallow without fear, pain, and choking, even though in my dreams I'm healthy. I find myself eating my weight in chocolate every day, since it's sugary and melty and has no chunks. I keep my chin up thinking about all of the food I will eat when I'm healthy again. I've been able to blend up soups and lasagnas into chunkless liquids, so that's a plus.