Achalasia, The Persistent Bug.

It's nice to see all the stories here about everyone's experiences! It really does help me to understand a bit more what's going on.

Achalasia showed up when i was about 12, early 13, and I was diagnosed all in one year. ( This was in 2008. I was first having issues in february of that year, and finally was done with any issues due to surgical advances that were required in October. ) 

It took 7 months to diagnose the issue, but by then I was already very sick due to the lack of food and liquid consumption. I lost about 30lbs at that point.

2 weeks after diagnosis, I went for my first balloon dilation. It failed, and it had closed in on itself. ( Better this than going too far I suppose. ) I had lost a large amount of weight and was in 10 days later due to not being able to consume anything.

2 months later I had my first heller Myotomy, and we thought all was well. Turn out the approximate 10 years treatment had not been in my favor, and only lasted 1 year and a half. I'm currently 17 years old, and turning 18.

September of this year, I had my first botox injection. That lasted 1 week.
We're trying again though! Since other solutions have been prewarned to being a bit dangerous, painful and would cause other solutions problems. They will not give you surgery unless they have to. Of course they also give you the decision to say otherwise.

I'll be ironically getting my next botox on my birthday! Not so bad about the day, since that's soonest as possible but I hope it works! ( At least I'll be able to have my cake!  )

I'm also now at the stuck point where I need to decide what I have to do. I can do the heller again, but so many complications follow. I was also offered removal.
I don't know how many people on this forum know or not, but you can get your esophagus removed for achalasia. This is only offered to patients if the case is persistent and nothing else works. It's a really extensive procedure, and there is so much you must do prior and after the operation, so I wouldn't jump right into it if I were you. The solution is said to last 20-30 years approx, and they use your small intestine or colon as the transplant piece. Again, really hefty procedure and should take some time before deciding, especially if your young.

I'm still pondering about it myself, whether I should adapt a great patience for my case in particular. My family is pushing to go the states, but Canada offers all the same solutions anyway. I have 2 doctors in Alberta, one for the thoracic's, and one for the gastro-intestinal. They're kind, helpful and definitely informative.

I always find myself thinking back to the girl that was 1 year younger than me, and I wonder if her procedure had worked out for her. It would seriously suck if it hadn't, since you do lose a lot of time, a lot things and you can't really socialize when it comes to being a teenager cause you go out, eat or drink coffee or whatever suits the fancy. ( I'm not one to party so it's all good there. )

I also think about the older patients, and how they must feel. Sure they get the more green lights on things since they're bodys are fully developed. ( I was told I cannot proceed to the aggressive treatment until I'm past 18, which I will be by the next decision making moment. )
For those under the age, for those living with it, and how hard it is.
I hope you guys are able to find ways to manage, it seriously does suck but one day, they might find something.

I was researching the other day and it turns out it's an enzyme that is no longer produced! Your white blood cells are attacking the nitric oxide synthase, which inhibits the action of smooth/relax reactions when it comes to swallowing and esophageal movement. The enzyme that doesn't work is also one intricate little guy too! It sucks that it kills the muscles, cells and nerve responses, hence why we get our esophagus' so deformed, or so mis-shaped, and why surgical solutions eventually fade. ( sorry I didn't know this so recently finding this out makes me a bit interested about it for sure. ) 

I wish they told me this when I was younger, instead of telling me that I'll be just fine, or things won't get worse anymore when I was 13, because that was a big lie. Of course they don't want to scare you, and I know they meant well! But it would have been nice to know. I hope the information I was talking about helps others here too, and you're more than welcome to share anything you know too! I would love to know more about it. I'm only 17, and I still got a long way ahead ( as do many of you !) to learn about the disease. I'm sure we can help medical science somehow figure this out and help someone else's future, even if we can't help our own.

I'm still a minor, and it's alarming to see how many young people have this! And how often it's misdiagnosed, or who can't get help, or who's suffering.

No one really knows about Achalasia. I have a few relatives and I, who are planning to help spread awareness in general for gastric diseases. ( Any kind really, because none of them are really addressed and this is why people suffer, or unfortunately die. Even the cancers that affect these areas, they can't really help you when they find it. ) I'm the only person in my family to have Achalasia.

I'm still fighting a very big battle, but I'm doing good this time because of my experience before hand. The regurgitation is so very annoying but it could be worse. It does get painful at times since my 3rd section of my esophagus does not respond to the food sitting there, so it doesn't come back up anymore. So it sits there until I either make it come up, or I wait till it gets through the tiny gap available. ( Which either way, it both really, really hurts.. )

It gets depressing, and I get a lot of post-surgery depression but I guess a good motivation factor is that my doctors do care for my well being ( or knowing that they do is definitely rest assuring. Most doctors do and that's a really nice thing. ) This has helped me shape as a person for sure, I know it has. It just makes me so very sad to see it happen to more younger, and younger people, more and more, and there's nothing so far that can really help.

So far, the end solution is to get things removed one day, depending on your case though as well. If your case isn't as persistent, or vigorous, you won't have too many problems which is the good thing. If it's like mine, where it won't stop and nothing has worked for the time it should have so far, I hope you get better too < 3

Thanks for reading c:
Amethystheart14 Amethystheart14
1 Response Nov 26, 2012

I hope things will improve for you. Until I read your story, I'd never heard of achalasia, and so I thank you for speaking up so those of us who aren't in the know, know. You're in my thoughts!