Achalasia Member Introductions

Hi All,

I am 53 I was diagnosed with Achalasia at 17. Its been a long road, but its been ok.

Blessings,

Jeanne

Katie, please get to doctor if you think you have a tear in your esophagus.Ā  If there is a teaching hospital within driving distance, call and make an appointment with a doctor who has experience with achalasia.Ā  I've lived with achalasia for 48 years and I've felt the same pain.Ā  You are young and need to take care of yourself now.Ā  It may be too late to do anything if you wait.Ā 

Connie

Hi,
I had to have a Heller Myotomy when i was 4 months old in 1994. I am now 22 and Iā€™ve still had to deal with the same problems all my life. Last time I had my esophagus checked out was when i was 17yrs old. They said there was a small tear in it and only half of it works.

I find myself struggling to stick to soft foods. I occasionally wake up in the middle of the night choking on food trying to come up. Meat, bread, fruit, soda, and water is especially hard for me. I still get chest pain all the time. I know i need to go back to a Dr to make sure things are ok but I donā€™t have very many specialists for that where I live and as a college student its hard to find time.

Iā€™m also terrified of going through all those tests again. Its so uncomfortable.

For now Iā€™m doing my best to not let it keep me down. I sympathize with anyone that has to struggle with this.

Sincerely,
Katie

Hello,

I was diagnosed with achalasia when I was 5 years old. I remember that everything I ate or drink would come right back up. I would describe it as the food getting ā€œstuckā€ and I still say that to this day. After my body got used to it food and drinks would stay in my esophagus longer before coming back up. Even though all my food went through a food processor nothing could stay down. I could drink ensure but I could only drink a few small sips every few minutes or it would come back up too. I went through dozens of barium swallow procedures and almost a dozen balloon dilation procedures. Balloon dilation would help for a few days but I already had to get all my food liquefied in a food processor so all I know is that it let liquid down for a few days.

It wasnā€™t after I had a Hellerā€™s myotomy done that it improved. After the surgery I had to stay hospitalized for 2 months because I was severely malnourished and high-risk because of that. It wasnā€™t until six months after I was released from the hospital that I could eat actual normal food. I was so excited to be able to eat steak and burgers again. They told me that everything would go back to normal and for the most part it did. Food will still get stuck from time to time and I always have to have a drink when I eat regardless of what Iā€™m eating but that is absolutely acceptable.

What they did not warn me about was the GERD. It is not typical reflux because itā€™s not an overproduction of acid but the lack of your esophagus keeping it down. This reflux you not only feel in your chest and your throat but your face and your back as well. I experienced this the first time as a surprise and I thought I was going to die. I was rushed to the emergency room and then an ambulance rushed me to the specialty hospital where I had my procedure. Some medications will stop the frequency of it but when the reflux comes it is bad. Those same medications also complicate the digestion process a little bit. Over time I got used to the constant pain associated with the GERD because it is constant but when it is severe it is very hard to do anything.

My procedure was done 30 years ago when I was six. They may have more advanced procedures and they may warn people about the acid reflux now. All I know is that I wasnā€™t warned about it so I figured I would tell you.

Though food still gets ā€œstuckā€ I eat what I want and for the most part when I want.

1 Like

Hey everyone my name is Loren and my brother has Achalasia.
he was diagnosed with this only today after 2 years suffering from the symptomes.
he is chocking at night and vommiting himself, swallowing problems and he lost a lot of weight.
life became so hard to live and he is very stressed.
iā€™d like to hear from other people who suffer from this and know how you handle it to manage living normally (as much as possible)?
also if you know what makes the symptomes worse?
thank you all!

I had this back in 2012 and lost about 75 lbs before they figured out and diagnosed the issue of Achalasia. Since having Heller Myotomy with ā€˜fundoplicationā€™ laproscopic surgery at Mass General, I have totally regained all sense of normalcy and have put on most of my weight and overall feel excellent. Very highly recommended procedure to bring back ā€˜normalcyā€™ from a very painful disease.