My first experience with Oesophageal Achalasia

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Hi !! I'm Gwen !!!

 My first experience with Oesophageal Achalasia was in 1970, I was 15. No doctors could tell us what was the cause  of my vomiting every meal ,having to stand up to eat, drinking gallons of water or milk to try to keep something on my stomach. i vomited every meal ,everyday for 5 years  before someone realized my problem. i was told I had some type of spasm that caused this condition. They tried dilatation first. Worked for little while. I had major surgery in 1975 which lasted until 2010. I began to notice my food was getting stuck every now and then, i have had 4 or 5 dilatations, barium swallows, and endoscopy since the achalasias return. I had Botox this year and it lasted a month. They are trying to find surgeon that excepts my insurance to do new procedure(inserting stint). When I first got this i lost lots of weight from 145 to 85 lbs. My Mom was so afraid for me. Now I am overweight by 30lbs. I have suffered this pain and agony a long time and I have gotten food stuck that I almost couldnt move. That is life-threatening !! This is a very uncomfortable illness. It causes heartburn,acid reflux and bloating. I don't know whats next, but I use my Nutri Bullet for most of my food. I pray we all find a procedure that will work. I am not looking forward to another major surgery eventhough the procedure will be much simpler now then it was in 1975. I have a very large scar,but I Thank GOD I am alive . Best Wishes to you all ! Please keep me up to date on any suggestions, new procedures or medications & I will do the same!!!

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8 Replies

  • Posted

    Hi Gwen

    I feel for you and all that you have gone through. Thank you for sharing your story. I hope and pray that your stent surgery is successful.  My very best wishes. Noels

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    • Posted

      Hi Noels,

      Thank you for your reply!! I will post if & when it happens !! Gwen

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  • Posted

    I was diagnosed with achalasia in 2012, I had an operation but after a year I was having spasms & choking, I now have Botox injections which have helped but still suffer unbearable pain in the chest where food is blocked, thank goodness this is not all the time. This site helps just knowing you are not alone I have every sympathy for you and hopefully one day there will be a cure. Good luck with the stent surgery.
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    • Posted

      Hi Cathie !!

      Thanks for your reply !!! Yes ,when food gets blocked the pain is unbearable. I get that sometimes also and can't breathe.I thank God that those times the blocked foods move through ,so i can catch my breath! Yes I am soo glad to find this site & know I am not alone !! I pray for a cure always and hopefully the stent well be the answer !!

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    • Posted

      I think the pain MIGHT be when the muscles controlling the motility (ie successive waves of contracions that take food towards the stomach) all start going into a spasm at once rather than being in sequence.   It would be worth askig the surgeon about this
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  • Posted

    Dear Gwen

    I do hope that the doctors can sort out your troubles, expecially after the surgery seems to have given you about ?35 years of relative relief until five years ago.   I do think you need to see a really good specialist.

    I think a lot of surgery these days is keyhole / laparoscopic because of the advances that have been made.   The final resort is removal of the oesophagus, and whilst you will wish to avoid this if at all posisble, I do know many people who have had this surgery and maintain a good quality of life afterwards, notwithstanding that they have to eat little and often and avoid food that gives them trouble.

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    • Posted

      Hi Alan M,

      Thanks for your reply !!Yes ,35 years without any issues !! The doctors always told me it could return,but I figured if that many years had passed ,I was good!! Yes I have a specialist ,but he is looking for another Doctor with more experience then he has!! Wow ,removal must be the last stage my doctor hadn't mentioned . He tells me stages as we reach them. I pray that won't be my only resort ,but if so,I'll do it to eliminate some of these issues I am having! Thanks for the concern & information !! I think I will look for another specialist !!Gwen

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