Patient Comments: Achalasia - Describe Your Experience

Please describe your experience with achalasia.

Comment from: susan, 75 or over Female (Caregiver) Published: September 07

Thank you everyone who has shared your experience with achalasia. My mother has this terrible disease and I have been doing lots of research. She has had the dilation four times, two over the last year. My mother now is unable to eat. She eats dry cereal in the morning and has lost lots of weight. The frustrations of this disease is when a doctor tells you northing can be done and you need to start over for help. My mother is 84 years old and has been in good health until this disease started stripping her of her liveliness.

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Comment from: HK, 45-54 (Patient) Published: September 06

I was diagnosed with achalasia 7 years ago, after a few years of misdiagnosis and worsening of the condition till I could only take in liquid slowly. After balloon dilation, I kept taking Nexium but ate very selectively due to cramping or gripping pain or reflux of the esophagus and chest areas. I ate half of what I could before, and had less than half of my old energy. During the last two years, I saw therapies and started Zen meditation. Now I am still on Nexium, but less dependent, I would say meditation had done me wonders. I hope others could try it and get the benefit as I did.

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Comment from: Acha, 45-54 Female (Patient) Published: September 02

I hope a couple of these tips help someone. I was finally diagnosed with achalasia 15 years ago, after three years of choking/vomiting after I fell asleep, and my throat got to the size of a pinhole. I told my doctor that something had to be done. In the final month, I lost 45 pounds because I couldn't swallow anything. My surgeon cut out a long muscle that I grew over time due to this. I've had endoscopies but they didn't help. The achalasia was not fixed. I've found that drinking hot liquid before I take medications or eat in the morning, helps open up the esophagus. I must have water with no ice, or milk with anything I eat or I cannot swallow it. I cannot swallow ice cold liquids or ice cream without something to drink with it. I have to burp and intentionally swallow food/liquid. I've slept in a recliner for 15 years, which gives me a good night's sleep without choking/vomiting. I bring a portable lawn furniture rocker/recliner to hotels with me to sleep in. There are worse things to live with, so this is how it is and it's okay.

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Comment from: Peter, 55-64 Male (Patient) Published: July 21

I had the achalasia surgery 10 years ago. There was immediate relief after the surgery. There were little to no side effects from the surgery. It was a very successful operation. I still have problem swallowing, however, it is only sometimes that I regurgitate my food. Some foods are worse than others. I find that it is very important that I go through a ritual before eating. My body has to be ready and prepared for my first mouthful. I do this by smelling the food, perhaps have a sip of water and only nibble a little bit of the food and try not to swallow it. The longer you chew without swallowing the better prepared your esophagus seem to be. If I walk past when my wife is preparing food and just take a piece of something and put it in my mouth I will almost certainly go through a choking process. It is not good to eat dry chicken, potato that is not mashed, rice, or hard boiled eggs. It really is a case of managing the condition. From time to time I return to my surgeon to have a dilatation of my esophagus which gives some temporary relief. Overall I would advise people with the condition to have the operation.

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Comment from: ccruce, 45-54 Female (Patient) Published: July 12

I was admitted to the hospital on July 2, 2016 because I was choking on a piece of bread. This is the second time my airway was blocked by food or even a mucus plug. They diagnosed me with achalasia but my esophagus is dilated so they will have to do surgery now. I am afraid because I never heard of this before now.

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Comment from: msmith, 45-54 Female (Patient) Published: May 27

I've recently been diagnosed with achalasia, but my symptoms are not anywhere near as bad as what I'm reading on here. I have heartburn and regurgitation when lying down some nights (waking up choking) and sometimes have the feeling of a lump in my throat. I've never had trouble swallowing food or liquids yet. I'm scheduled to have surgery in a week and am now wondering if I should hold off until my symptoms are worse.

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Comment from: ef, 35-44 Female (Patient) Published: May 03

I was diagnosed with achalasia and had my first surgery by the time I was 7 years old. I had another surgery at age 14. I have mobility and sphincter problems. The doctors were very surprised to see someone of such a young age to suffer with this. This is something I continue to deal with on a daily basis. Rice, pasta and breads are very hard for me. I am on a daily medicine for acid reflux and it also helps to repair any esophagus damage.

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Achalasia - Causes Question: What was the cause of your achalasia?
Achalasia - Symptoms Question: What symptoms did you experience with your achalasia?
Achalasia - Treatment Question: What treatment was effective for your achalasia?

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