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Fellow Achalasia Patient

Posted , 3 users are following.

Nowayitsray
Nowayitsray

Well first off, I'd like to mention I am 26 year old mother of one, and have had symptoms of this STUPID disease for seven years. For five of those years it was misdiagnosed as GERD. I had went in to the doctor because of the spasm pain, and they told me it was heartburn. I am due for my HM surgery in 2 weeks as I am starting my liquid diet tomorrow. 

I have been reading everyones testimonies, an have cried out of anger, and happiness. I even cried because I'm so happy that some of you can eat like normal people without throwing up. Really, I'm so happy for you all that have returned to a normal eating life. 

I have extremely bad Achalasia. My throat is so dilated that the dilation procedure will not be effective at all. I don't want to waste time trying botox, because I'm so tired of having this disease. I've thrown up in almost every single toilet of nearby restaurants and gas stations, and have had water come back up and splash me in the face and it's gotten in my mouth. I choke on my saliva, and when I eat it blocks my airway and I almost faint every time. 

After reading this page, I am no longer sure I want the procedure done because for most of you it hasn't worked. I'm underweight currently, and am not looking forward to losing even more weight because of this disease and surgery. I know no one with this disease and am so very lonely. 

I can't tell you all how "normal" I feel on this page. Those chest spasms the shoot up in my teeth/jaw, and arm are EXTREMELY hard to explain to someone who doesn't have Achalasia. It's immobilizing and happens often to me, and I chug gallons of water to make it go away. Having to constantly drink room temp water is becoming normal to me because I cannot drink ice cold water. It hurts me very much. 

Any light at the end of the tunnel stories will help. My son and husband deserve so much more, and I can tell it's taking so much time away from them constantly having to throw up. I don't know what to do now. 

I am SO SORRY to anyone who has this disease. I wouldn't wish this upon my worst enemy. I pray to God that one day we all will be able to eat normally again and not be embarrassed to eat out in public. Thank you so everyone for making me feel normal for the first time in almost a decade. 

1 like, 2 replies

2 Replies

  • neil32387
    neil32387 Nowayitsray

    Posted

    Hi... Thanks for sharing- despite your obvious anguish. As a sufferer for15 years I can relate to your account.. It is truly horrible at times (actually mostly)  .. I personally have put off the opp for years and am still unsure also... Mainly due to conflicting medical advice; so when averaged out - doing nothing seems like as equal an option... One thing I have told myself though is that if my symptoms worsen to a point where I throw up at every meal again (I seldom do now, but great discomfort remains) I will go for surgery... We all know there is a small risk of a tear; plus that it may not work first time, but I think most people eventually find a new way to cope. Lots of PPIs etc; but seems half the Nation are on those... I manage my pwn symptoms by throwing different things at it.. Alternating with: VB/Magnesium - pain killers (even Paracetomol work sometimes) - had some success with Calcium Channel Blockers (by prescription only) - holding my arms up, breathing in, then forcing gently down with my diaphragm (really helps) - meditation - Bowen Therapy (made a big difference for me but not a cure) - acupuncture (semeed to help) .. For me its all about treating it as a dynamic problem and not letting it sink and fester. I keep on my toes!smile literally sometimes! smile ...

    When all else fails a sniff of Amyl Nitrate or Nitrate spray can get me out of hole. But again not a cure, and will only keep its effectiveness  if seldom used.... 

    Medical advice aside, hopefully you will know deep down if the time is right for surgery ie, if an inner voice says you have no choice now... Can happen at anytime I guess- but we are not alone at facing these profound worries that we do know!!! Strength in numbers!smile 

    Wishing you healthy and loving karma!! 

    Neil 

  • maya2452
    maya2452 Nowayitsray

    Posted

    It sounds as though you are in a good deal of misery and I know how depressing it can be. You must do whatever you can to make it better, including surgery, either the Heller-Myotomy or POEM.  Doing nothing will not make it better. Many achalasia sufferers have found improvement through surgery. I'm hoping to have a POEM procedure very soon. I'm just waiting for the doctors to set up the surgery. I've been to so many GI doctors and most of them don't understand our situation. I have had this disorder for 16 years but it has gotten much worse in the last year. I hold out hope for a better quality of life because hope is all I have right now. I have the same hope for you.

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