Just diagnosed with Achalasia this week

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Hello everyone!! I am a 65 year-old recently retired children's librarian. I have been sick since January. At first the doctor thought it was acid reflux but no medication worked. Tuesday, I had a barium swallow and now I've been diagnosed with Achalasia. I am trying to set up an appointment for an endoscopy. Any insights about the disease and how it's managed would be most appreciated. Will I ever be able to have pizza and favorite foods of the past and what about coffee and alcohol?  Do you use the acid reflux diet? I have lost 30 pounds in 3 months. I manage fairly well during the day but vomit and spit up during the night. What about exercising? I would like to get out and walk but am worried about burning up calories when I have so little in my body. Thanks so much and I am very thankful for this site!

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  • Posted

    I also lost 30lbs in 3 months. Then I had the heller myotomy. It was a 90%improvement. They told me I will never be healed as there is no cure. I can eat anything I want. Sometimes bread is slow going down and even liquids can be slow but in 2 years, I've only vomited 6 times from food getting stuck. I also have since had a pneumatic dialation since my fundoplication was a little tight. I suffer from spasams with little to relieve them, but the eating is good. You can exercise but I wouldn't until after you get it fixed. Like you said, you have such little intake. This disease is poorly understood and often mismanaged. Do your research on the treatments and the side effects of them. Repeat dialations can damage your esophagus, as well as botox, so that surgery may not be as effective. I live in the US and travel for a Dr who understands this disease. Good luck to you.
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  • Posted

    Like Teresa I had Heller's myotomy (30 years ago in my case) and that greatly improved my swallowing. Over the years it has gradually worsened again but I haven't yet had a repeat operation. Swallowing is now very variable - at its worst not even liquids will go down but fortunately that situation doesn't last too long. When it is bad I have to switch to a liquid / semi-liquid diet e.g. coffee and chocolate, beer and pringles. After a few hours / days I am able to swallow solids again. So, yes coffee and beer (but nothing stronger) are helpful, as is excercise. The more active I am the sooner I am able to retrun to swallowing solid food.
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    • Posted

      Thank you, Alan. From what I've read the Heller's Myotomy is a more successful treatment than the balloon dilation. I'm hoping to get some answers soon after I have my endoscopy. Right now, I'm not eating too much: yogurt with berries, oatmeal, and a pretty meager and bland dinner. I find that I must take a laxative pill every couple of days. Sure will be nice to have some sense of normalcy in the (I hope) near future. I appreciate your response.
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  • Posted

    Hi Kerry,

     I am the same age as you and have lived with A for around 11 years now. I had the usual tests to receive diagnosis and lost around 14lbs at that time as I was really struggling to eat ( and sleep) .

    It was recommended to me to have the balloon dilatation which I had around 10 years ago.  Unpleasant though it was it has given me relief ever since with no more intaventions. 

    I eat the foods you mention but all in small portions and eat little and often! 

    I have no trouble with my weight now ( wish I did) and have infrequent spasms. 

    Think I have learned to manage the condition, I am always aware of it however and know my 'triggers' for problems. I drink water before eating to lubricate my throat and especially when eating in company stay away from my problem foods like salad and chicken! 

    I now often ask for a child's portion or even eat a starter as a main course. No one really minds and if I ever have a problem I leave the table and go to the ladies  ( or out of sight) and jump up and down so that gravity does its work! 

    As has been said you are never 'cured' from A but learn your own way to adapt and live with it.  I know it is a rotten condition but I also remind myself often that there are far worse terminal conditions out there.

    Hope you find your answers and if you are in London, or can get there, there is a great group of fellow Achalasians that meets every month or so to offer support.  Let me know if you want details.

    Best wishes X

     

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  • Posted

    If you find the website of the Oesophageal Patients Association, and go to The Oesophagus and Achalasia, you will see some links to meeting notes that you may find helpful.

    You may always have problems with foods of certain textures and will always have to try to avoid stress and tension around swallowing, but there should be no problem about exercise, which is definitely good for you. Try to take in nutrition through soft and liquid food little and often.

    Try raising your head in bed if reflux is a problem at night, but this may be because pressure from unswallowed food is opening up the upper oesophageal sphincter.

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