Patient Comments: Achalasia - Describe Your Experience

Please describe your experience with achalasia.

Comment from: Shelby, 45-54 Female (Patient) Published: November 18

I was diagnosed with achalasia at the age of 15 after 2 years of searching for answers. That was 35 years ago. I have learned to live with this disease every day of my life. I had a myotomy after numerous dilatations. I now have dilatations every couple of years because of scar tissue built up from the acid reflux. I eat extremely slow, drink tons of water and lately I have been throwing up daily and have a hard time just swallowing from sucking on candy. I have an endoscopy yearly for swallowing difficulty and cancer screening. All I can say is good luck to everyone affected by this. After 35 years, I'm still dealing with it daily.

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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: Lyrics mom912, 35-44 Female (Patient) Published: February 06

I have had trouble swallowing since 2010. I went to a doctor and he said it was IBS (irritable bowel syndrome) with constipation and some gallstones. I had the stones removed. I was still having the trouble with the whole swallowing thing and here it is 2017. So I went to another doctor, I went through more tests, and got told that I have achalasia.

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Comment from: tiodulce, 55-64 Male (Patient) Published: December 07

I was diagnosed with achalasia about 7 years ago, fortunately for me by a well-informed gastrologist, who not only knew exactly what my problem was but knew one of the world's top thoracic surgeons in the area. Having, or shall I say, attempted to have coffee that morning it didn't go so well, and after an hour, it still didn't go down. I threw up the coffee in the doctor's office bathroom. I was told to be ready for the operation in two days. I can't express enough how important early diagnosis is and putting your health with the best of the best with this very delicate section of your anatomy. Before the operation, eating while standing was helpful, of course plenty of water. And it is just best to make small plates, and be near a bathroom or bucket, meaning eating alone.

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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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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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