End Stage Achalasia

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I had a conversation with a doctor about one of the goals of treatment is to avoid end stage achalasia and be able to keep my esophagus as long as possible. Since then it got me thinking, how can I avoid end stage achalasia from happening? Are there ways to prevent that?

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  • Posted

    I guess the best way to try to avoid the 'end-stage,' would be for you to follow the advice of your Surgeon & any other specialists.  Since I was diagnosed at the 'end-stage,' that's about the best advice I could give you.  If you have acid-reflux, heart-burn, etc, then see about buying a wedge-pillow to sleep on at night.  This pillow will elevate you, and keep the stomach acids from washing up into the esophagus and irritating it.  I've used a wedge-pillow since diagnosis last June.  Its not the most comfortable pillow to use; hard to get used to actually, but it has helped me [and I don't have acid-reflux], in terms of food moving down, through that miserable sphincter muscle, into the stomach.  I'm sure, Kayla, that others will have some suggestions for you, especially concerning diet.

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  • Posted

    I think that  you probably have to try and avoid the food that congeals and adds weight to your oesophagus to make it (any) baggyy(ier), or food with a texture that is stringy, or has skin or anything that might stick and create any more bloackage.  
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    • Posted

      You guessed very right...I haven't had bread since pre-surgery, as even a piece of toast would congeal and block; I think I tried one piece, post-surgery, but it blocked.  Along that line, for me at least, cinnamon buns, loafs, chewy cookies, chewy brownies, bagels, etc. are definitely out.  However, having said that, you might be different, as you are likely younger than my 67 years, and you were not at end-stage.  I'm having difficulty with meat, especially chicken [white meat], even if it is soaked in gravy [yuk] or a sauce, and cut in the tiniest of pieces [like for a small bird].  Everything will be trial & error for you, at this time.  Some folk, who have had the Heller Myotomy & Fundoplication surgeries, are able to eat a heck of alot more than I am...so as I said, your experience may be very different from mine. Listen to your body.  I use a lunchen-sized plate for my meals, as that way I can control the amount of food on the plate, as my stomach does not hold much, and to overeat is not the best experience.  Today has not been a good day.

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    • Posted

      Yeah im only 20 but my surgeon said I was the most advanced case hes seen for someone my age so I guess it had me worried. Im not sure how common achalasia is here where I am in the U.S. but for him to say that it had me thinking a lot. Im sorry to hear it hasn't been a good day for you. Have you not been able to get much food down?

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    • Posted

      Wow, you are young, but having said that, I've read posts on this site from people, whose Achalasia journey started when they were in their teens.  In hindsight, mine probably began when I was in my early 30s, if not sooner.  Achalasia is very rare, maybe 1 in 100,000 people have it.  As my surgeon said, most doctors [GPs] don't even see 1 case of this in their whole career, and so, many of those GPs don't know much about Achalasia or how to treat it.  That is why I encourage you to take your surgeon's advice, etc., because if they are doing the surgery we need, then they know a lot more about this disorder than other doctors.  My esophageal sphincter muscle doesn't seem to 'wake up' until around 2pm.  It is finicky, and probably will need another stretching.  So, yes, stuff sits.  The liquids might dribble down into the stomach, but anything else has to wait.

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    • Posted

      Yeah I myself started at 14. Thats quite a while you have been dealing with achalasia yourself as well. I hope tomorrow is at least better for you tomorrow I know it can be discouraging sometimes.
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    • Posted

      So very young, Kayla, so very young.  Unfortunately, Achalasia doesn't 'go away.'  It may well have started when I was in my teens, but 'who knew.'  That's likely how I ended up with my diagnosis being at the end-stage of type 1.  Thank you.  I take each day as it comes, and get on with it.  Bitter dark chocolate wafers [like little discs] actually help.  The flavinoids in the bitter chocolate help the sphincter to relax somewhat.  We have a chocolatier in the city I live in, who make these little wafers. Its a bit of drive, but well-worth it.  I've noticed on the site posts, that many of us with Achalasia lean-into bitter dark chocolate.  Think it soothes, somewhat. 

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    • Posted

      Im not sure if you have tried tea to help food down but it works for me sometimes or when im having stomach pains. I find peppermint, ginger, or camomile tea helps to relax the muscle sometimes. I'll try the bitter chocolate even though i love my sugar and I love milk chocolate which is pretty bad to say but I will definitely try it out.

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    • Posted

      Sad to say, because I absolutely loved a good, strong cup of black tea [leaves], tea is out for me.  Bitter, dark chocolate takes some getting used to, and I would suggest you buy a good quality dark chocolate [not the waxy, cheap stuff], if you can, as it makes a whole lot of difference.  I tried a couple of 'bulk' store wafers, and they were too sweet and waxy.

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    • Posted

      Im sorry you can't enjoy tea anymore. I really do hope you can find a more permanent solution to your achalasia. This isn't really a way to live or a quality life.

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    • Posted

      If you ever need someone to talk to you can always message me. Thank you so much for always answering my questions.
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    • Posted

      Thank you, Kayla, that is very sweet of you, and you also, feel free to message me.  That's part of the journey, eh.  Sometimes it is simply reassuring to know, that what we are experiencing with Achalasia, is what others with it, also have experienced.

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