Patient Comments: Achalasia - Describe Your Experience

Please describe your experience with achalasia.

Comment from: goldfish, 65-74 Female (Caregiver) Published: March 29

Hubby was diagnosed with achalasia on the 29th of January 2016 with aspiration pneumonia. They did the endoscopy 3 times, the 4th attempt was with Botox injection (2/15/16). Tight muscles opened up and released the food through the stomach. He's on a feeding tube since the 3rd of February. He came home from rehabilitation on March 23 and back to the emergency room on 25th. Unfortunately his esophagus is clogged again and they did the endoscopy. Today, the motility nurse will check his esophagus and start from there. He was told that he might need a surgery. I'm so worried about him because he is diabetic.

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Comment from: BTL, 45-54 Male (Patient) Published: January 20

I began developing symptoms of achalasia over about an 18 month period. Mine became so bad that I could barely consume clear liquids standing up. I lost 40 pounds and would wake almost every night choking on food, liquid or just saliva. It took me a couple of months to get the Heller myotomy with Dor fundoplication. Since the operation, a little over two years ago, I can eat almost normally and can sleep lying down without problem. I still need to watch what I eat, eat slow, drink lots of liquids with my meals, and occasionally struggle to get food down when I fail to do what I just described. I can eat pretty much everything if I just take my time, chew it well and drink liquids with it. All in all, it gave me my life back. Any side effects, like mild nausea on occasion, are nothing; they can't be easily handled. You are never cured of this, but you can certainly control it and live a pretty normal life. Don't be afraid to have the surgery, it is short, easy and quick recovery. Don't put off getting the surgery, you will only kick yourself later if you wait.

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Comment from: add2370, 45-54 Female (Patient) Published: December 29

I had initial symptoms of achalasia at age 17 to 18, in 1987-88. It was labeled as many different things, but never had an appropriate diagnosis until other symptoms began to appear fifteen to twenty years later. These symptoms led me to a 23-hour observation that turned into 7 days. Finally I was diagnosed with achalasia at age 34. Mine was far gone enough to go straight to the myotomy/fundoplication surgical procedure. Following this surgery, I was able to lay down and sleep flat for the first time in nearly 20 years. Now, 11 years later, I am seeing a recurrence of symptoms, so I now need to go for a dilation. To anyone needing the surgery, I had a great experience with mine. I was told it may not be permanent and may see symptom recurrence after ten to twelve years, so it's right on track. I was on soft foods/ Nissan diet for a couple of weeks and then I went for my first steak in almost two decades. I was able to eat it and enjoy it. I too found that dietary changes often helped but only sometimes. Often icy cold water helps but not always. Some days, the throwing up helps more than others. But it is the nature of this illness.

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Comment from: JMB, 35-44 Female (Patient) Published: November 04

I was diagnosed with achalasia soon after the birth of my son, 12 years ago. I was showing symptoms as long as 15 years ago. I had two series of Botox injections that failed. I had a Heller myotomy that failed as well. Currently I take nifedipine to help me eat and drink. I developed aspiration pneumonia in 2009 but wasn't diagnosed until 2010. Despite many efforts to cure my incessant cough, I kept being handed Z-Pak and allergy pills by the doctors. A visit to the emergency room one morning finally led to the discovery of pneumonia. I have good days and bad days. I have severe body aches at times, stomach pain, joint pain, and there is never a trigger for any of it. Stress control is mandatory with this disease; if that's a thing. Esophageal spasms occur every single day. Sometimes hundreds a day, sometimes only 10 or so; that's another thing, no two days are the same. If I could eat eggs today, there's no guarantee I could eat them tomorrow. Literally the only peace I get from this disease is when I sleep. The hardest part of this disease, is watching my family watch me. The pain and worry in their faces shatters me. Being overweight makes this disease invisible to most people. They look at me and see a robust woman. But my body is stuck in this weird starvation mode and holds on to everything I eat. It's hard to describe to someone what it feels like to not be able to swallow even water sometimes. No one gets it. They can't unless they're going through it too. So to the next sufferer that reads this, good luck. I hope you have a family like mine that supports you.

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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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