Patient Comments: Achalasia - Describe Your Experience

Please describe your experience with achalasia.

Comment from: Herina, 45-54 Female (Patient) Published: April 14

I started having difficulties swallowing when I was 19 years. No one had any idea what was wrong with me and I was given medication for sore throat; antibiotics, you name it! The last straw was when a doctor suggested I was suffering from heart break. I lost so much weight (at my worst I was 48 kg and am 5 ft. 6 inches tall) as I could barely keep anything down, even water without vomiting, and I would be starving most of the time. I figured if the problem was not physical then it had to be mental as some doctors had convinced me that it was all in my mind! After a visit to a psychiatrist, he sent me for a barium swallow and the radiologist asked me how long I had had the problem. I cried tears of joy because finally I was not a mental case, it was achalasia! I proceeded and had surgery to open it up physically and it was very successful and that was 20 years ago. To date all is well. I suffer occasionally from heart burn but if I keep away from spices, I am okay. I am thankful for this healing and hope that no one has to wait like I did for 10 years to get help.

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Comment from: KATHY, 45-54 Female (Patient) Published: April 11

In the year 2001 I started having bad problems eating and drinking and vomiting everything. I went to doctor after doctor, no one knew. I had test after test, I had laparoscopic Heller myotomy with part Nissen fundoplication, and two years later I had an esophagogastroduodenoscopy. It kept getting worse, never better. Six months later I had a thoracoscopic esophageal myotomy on my right side. They told me I had achalasia and lost all my motility in my esophagus, so four years ago I had to have my whole esophagus removed, even my sphincter muscles, my stomach brought up in my chest and half my stomach made into a tube attached to my throat. I have never drank or smoked, or did drugs, it is a lot of challenges every day. I take a lot of medications but not one doctor can tell me how you lose all motility, they only say it is a muscle dysfunction of the esophagus. It has changed my life so much some days I eat, some I don't. I weigh 101lbs and never go over. So please stay on top of your symptoms, because it might be alright one week and turn just like that. I only wish a doctor could answer my questions; they just tell me I am one in a million to have all of mine removed. But as I said it's challenging every day.

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Comment from: manju, 19-24 Female (Patient) Published: March 21

I really don't know when this symptoms started. I was a medical student when I started to experience the symptoms. I suffered a lot, I was not able to drink water also. Every day I had vomiting and wheezing also every morning and I had severe heartburn. Finally I underwent barium swallow and manometry and was diagnosed with achalasia cardia; it was a painful moment in my life. Afterwards I underwent endoscopy with balloon dilatation twice but it was failure. Then I underwent cardiomyotomy. Afterwards I was on liquid diet for 3 months; now 4 years are over. I can swallow everything slowly, but after surgery also I didn't gain any weight.

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Comment from: AppleJack, 35-44 Female (Patient) Published: March 14

I was entirely normal until about 2 years ago. I started having heartburn once a month, then once a week, then once a night, then several times a day and night. In one year I went from the first experience of heartburn to the most severe experience of GERD, a progression that seemed to take many years in other people. I started to realize that eating was difficult. And then more difficult. I told my doctor that I was having trouble swallowing and that I was vomiting. He told me I had severe GERD. I realized I hadn"t really told him how it was for me. I went back two weeks later and explained much more specifically how it"s difficult after I swallow, and how when I say I am vomiting, I am not referring to acid reflux, I mean vomiting, and he understood. I already suspected that I had achalasia after reading a book about gastrointestinal problems, but luckily, a barium swallow showed the bird"s beak. Next I will have esophageal manometry to confirm or deny, and I"m hoping to get a Heller myotomy or a peroral endoscopic myotomy (POEM). If so, all this happened in two years.

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Comment from: Rastalife, 25-34 (Patient) Published: March 14

I had achalasia for 5 years. I didn"t realize it till I had had it for 2 years. It slowly got worse. It started with difficultly eating. I felt pressure in my chest, and soon after a relief as it passed through. I was wrongly diagnosed with GERD and was given an antacid prescription. Obviously that didn"t work. So I went back, and had an upper balloon dilation and that worked for about 2 hours. A month later I went back, again they did a balloon dilation, even though I expressed that it was unsuccessful. At this point it had gotten worse, and had been 2 years. So again I went back and described my symptoms. I can"t eat, I regurgitate almost every bit. I have lost 15 lbs in a year. The doctor treated me like I was some young kid looking for attention. I was 24 years old. Mind you I had no insurance and had spent over $3000 in tests and treatment. Finally they order a barium swallow test, that proved to show my esophagus was of it's rocker! Then one more test was done to show what muscle it was that was causing the blockage to my stomach. And I was rightfully diagnosed with achalasia. Now it"s been 4 1/2 years. My doctor referred me to a surgeon to proceed with a Heller myotomy. Thank goodness! I can eat again, it"s been 3 years since my surgery and I am still treated. My esophagus still is on the slow side, but no more getting stuck and regurgitation. I applied for charity help at the hospital that paid for my surgery. I hope my story helps. You can"t live a full life without being able to eat properly take care of yourself!

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Patient Comments

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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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