What is life like with Achalasia?

It seems without fail I am asked this question at least once a week.  While I try to answer it for those who ask, I struggle to not gross them out or try to seem to dramatic by sharing "what life really is like living with this disease named Achalasia".  So I thought I would try to explain it here in a blog post, I hope I am able to actually describe it in a way that readers can get a visual for what a person with Achalasia experiences in a day.

Well the day of an Achalasian starts before dawn.  Imagine waking up in a coughing spell that concludes with you puking up whatever has been sitting in your esophagus since before you went to bed the night before.  That has become the normal routine in my life, in fact most of the night has probably been filled with episodes like this with the hope that you will actually get some meaningful sleep.  Then your alarm goes off and you roll out of bed, to start your waking hours of the day like every other person without this annoying disease.  You get in the shower and wash off splatters of puke from your night of sleep. And prepare yourself for the tasks that lie ahead of you.  After getting dressed, you make your way into the kitchen to grab what has become your new breakfast a bottle of Boost, a bottle of water and some gummy vitamins.  I slowly start to drink down the Boost hoping that it makes it into my stomach to provide the needed nutrition so I can make it through the morning.  Of course on cue the Boost is rejected and comes backup filling my mouth so much that it looks like I have chipmunk cheeks.  Again, I swallow it back down hoping it will stay down this time and try a technique of swallowing mouthfuls of water to create enough back pressure on my LES in hopes some of it makes it though into my stomach.  With a little bit of patience, I feel a cool sensation rush into my stomach and my hope has been realized this time.

I head out the door for work and make sure I grab my spit bottle just in case some of the water decides to make a reappearance back in the mouth.  I must state that having been recently diagnosed with Achalasia and waiting for surgery; what I am describing here is my normal routine before having surgery.  I hear from others in my Achalasian support group that after surgery life returns back to some normalcy that people without Achalasia experience on a daily basis.  I so hope they are right about that, but what has me on edge about it is that they keep stating that everyone's experience is different.

The Next Step

Well, I have already taken the next step in the Achalasia journey.  On April 25, 2012, I under went surgery and had a Heller Myotomy with a dor fundoplication.  The surgery was a success thus far. So for those wondering why was surgery the next step.  As I researched all the possible treatments for Achalasia, I learned that you have basically four different choices. 1 - Choose to do nothing and deal with the side effects until you can not deal any more. For me I had already been doing this for over four years and honestly was at my wits end.  I needed a better solution. 2 - Choose to get a Botox injection into the muscles and hope it relaxes the muscles for some amount of time and offered some relief. After research I learned this was a very temporary option and most people only got at most a couple of weeks of relief.  Also, I learned that having this done could make option 4 more difficult and less successful.  Personally, I was looking for something more permanent and a couple of weeks of relief was not it. 3 - Choose to get a dilation. What is a dilation? This is a procedure where they run a scope down your throat with a balloon on the end and force the balloon into the LES and then expand the balloon in an effort to stretch the LES muscles and even potentially tear the LES muscles.  Just the thought of that procedure sounded unpleasant and then I learned that having this procedure done would maybe only offer relief for up to a couple of years. The risk with this was that the scaring associated with this procedure again would limit the chances for a successful option 4 and could be even fatal if it ruptured the esophagus. Again it did not sound like the best option for me and so I past on choosing this option. 4 - Choose to have surgery, Heller Myotomy. So I met with a surgeon and talked about what this option would and could do for me on my journey. I then did some research and talked to others who had been down the same road I was considering heading down. My conclusion was surgery was the best option.  Now I must say that choosing an experienced surgeon is very important because this is a very critical surgery and if not done correctly could cause further complications to an already miserable existence. Luckily for me that within the HMO network that I belonged to was a very experienced surgeon who had been performing this surgery for more than 14 years. 

So now I have been recovering for almost six weeks and life is getting back to normal, a new normal. I am now able to eat almost everything I was able to eat before I started having swallowing issues. I am able to sleep through the night without being woken up by regurgitation issues. I will say that meals do consist of drinking plenty of fluids to make sure all swallowed food makes it into the stomach. But life is good compared to what it was like prior to surgery. I hope those who are faced with making a decision about what treatment to chose, find this post helpful.