Patient Comments: Achalasia - Describe Your Experience

Please describe your experience with achalasia.

Comment from: Lynne, 55-64 Female (Patient) Published: November 29

I am 62 years old. When I was about 13, I suddenly was unable to get my food to go down, and when I was in bed, disgusting though it may sound, my food used to regurgitate through my nose. The rest of the time I had a permanent cough, and was very thin. I went to my general physician (GP), explained my symptoms, and he said I had bronchitis, and that was causing the cough. He prescribed antibiotics. I went back several times and told him that I was still unable to swallow my food, and that I was vomiting the medication back up. He told me to 'go away and stop bothering him' and said we will worry about the indigestion when the bronchitis is cured. I did go away, and I never went back to him. In the meantime, it gradually got worse, and was so bad that I was permanently excused from physical education at school, as they could see how ill I was. I tolerated this until I was 18. It got to the point where I could neither eat nor drink, so I went to see a different doctor. He sent me immediately for a barium x-ray. I had one mouthful. I was told I needn't swallow any more, it was clear on the x-ray that the barium I had swallowed was going nowhere and I had achalasia. Within two weeks I had been operated on (Heller's myotomy). I was just 19, I had lost 6 years of my life, and now I had a 6 inch scar from just below the breast to my tummy button. But I could eat again! Unfortunately, as time has gone by, the hard tissue from the operation has caused further problems. I am now on 40 mg of Nexium per day, cannot lie flat as it causes acid reflux big time, have to drink a pint of water when eating, and am limited as to what I can eat. Every few days I have a real problem, where the food I have swallowed won't budge, and I end up throwing up. I have had so many dilatations, I can't remember how many, but am unable to have any more. I have had the Botox, which didn't help, and have gastroscopies regularly. One thing I will say, my consultant here has been brilliant, unlike my previous GP. I would describe achalasia as a very unsocial disease. You cannot enjoy going out for meals, or entertaining, dinner parties, etc., because you never know when you are going to jump up from the table, or leave your food. I never hear of any research into this disease either. Maybe this is because it's not a terminal illness, or maybe it's because it's rare, I don't know. But, I often wonder; if my GP had listened to me all those years ago, maybe it just might have spared me of the misery I have suffered for the rest of my life. I have made it known to my current consultant that I would be happy to be involved as part of any research into achalasia in the hope it would help towards understanding and curing this horrible disease. Thank you for listening to my story!

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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: 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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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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