Patient Comments: Achalasia - Describe Your Experience

Please describe your experience with achalasia.

Comment from: pleasehelp, 35-44 Female (Patient) Published: April 11

I am still testing for achalasia. I have done the barium swallow and the manometer test. The results show little movement of the esophagus and no relaxation of the stomach. I started having trouble swallowing in October 2016 and stopped swallowing solid food in mid-January 2017. I currently am down to 100 lb. and feel terrible every day. I am to the point that I throw up around 30 to 40 times a day and have trouble keeping liquids down. I am a middle school teacher and can barely keep up with my job and my own family. I like my doctor but each step is taking so long. I don't know what to eat and no one seems to care enough to tell me.

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Comment from: bell2013, 25-34 Female (Patient) Published: January 25

I just found out that I have achalasia type 1, on January 13, 2017. I go in January 30, 2017 for the Heller myotomy surgery. I am 29 years old and I have been fighting this since I was 27 years old. I cannot eat or drink anything. I don't ever get a good night's sleep because I am always choking on my spit so I am scared to go to sleep. And having this very rare medical condition that I just found out that I will have for the rest of my life has really put a damper on my life style. I am scared to go out to dinner with my husband because I am always running to the bathroom. Since all of this started I have lost over 150 pounds, and just since July 2016 is when the weight loss really kicked in. I have dropped over 100 pounds just since July 2016. I have been in and out of the hospital because of severe dehydration and not enough nutrition. I am also a high risk for a cardiac arrest because my potassium levels keep dropping because of this achalasia. Will my life ever go back to normal!

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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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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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