Living with achalasia.

Posted , 52 users are following.

Hello to all. First let me say to all that I know exactly what you're going through. I don't have this disorder, my son does.

I'll try to be as thorough as possible so all questions you might have will be answered. My Son s 19 years old. And after numerous tests and doctors appointments he was finally diagnosed with achalasia.

This all started about 10 months ago. My son Had graduated form High School and entered the University. He has always been active in school sports (baseball) is his game. His weight as a freshmen in High School was arund 205 lbs. he was 6'2 at the time. His weight fluctiuated from 215 lbs to 240 lbs in his last three years of high school.

By the time he graduated from HS he was 6'4 220. In the first year of University life he got up to 244lbs. No activity, just eating and eating...hahahaha...

Around 10 months ago we started noticing something that was new in him. When he would eat, he would make this strange sound. He said it was hic-ups, but he did it with an exagereated sound. But everything was nomal. He could eat like before no problems at all with anything.

Only thing was that weird sound he'd make. (hic-ups)

This went off and on for a while. About five months ago he started saying he felt preasure in his chest when he ate. He felt like he had too much acid in his stomach and felt the food come up. Obviously we thought heartburn and told him to take anti-acids. That never worked.

Finally in April 7th we had a doctors appointment to see what this was.

Up to now he felt the preasure, but he still felt good. He was active, went out and play football, baseball etc. he went as far as telling the doctor that if not for this weird strange feeling in his chest and throat he felt like he could run a marathon. He was given mediscations for aci reflux,  those didn't  work. We knew then it was not acid reflux.

From there we were sent to a ENT specialist. Ear Nose and Throat Doctor. He didn't find anything wrong that he could see. That specialist ordered a swallow study. When he went for that study it came back normal. My Son told us that day he felt fine.....he felt like the thing he swallowed pass through nornmally, something that was not the case every other time. He discribed it as bubbles in his throat with preasure on his chest.

From there we went to a GNT. He had a endescopy done in early June. That revealed nothing. Everything was normal. A byopsy was done on his esophagus during that endescopy and it too came back normal.

During this time form April to June we see him having a lot more difficulty eating. On the visit to the doctor on April he weighed 244 lbs.

When we saw the Gastorenterplogyst he was down to 230 lbs.

The G doctor was miffed by these syptoms and went as far to tell us there was nothing else he could do. He said he had never seen a case like this.

By this time my wife and myself were on the internet looking for answers and we found a test called upper GI test. The famous Barium swallow test.

We suggested to his G doctor to order this test. He did and we saw the problem. When they saw the issue they couldn't believe he was getting anything down. The liquid he got was just stuck at the bottom of his esophagus. From there he got another study done. This one was a Manometry study, were they measure the preassure on the esaphagus.

His results were not good. He had stage 2 achalasia.

From the first day he visited our primary doctor on April 7th to July 30th my son weighed 212 lbs. Once we had all the information he decided to go into surgery. Dr. Mark Takata from Scripps Health in San Diego, California did the procedure. By now we knew all the options for him, but the decision was my sons. In the last three weeks befor surgery he couldn't even drink water. He would have to vomit to feel relief.

He had his good days and bad days. in the last three weeks before surgery it seemed like he had nothing but bad days. Every time he vomited it was self induced. He had to make himself vomit to get relief.

Not eeven water would go to his stomach , it was that bad. By the grace of God something did pass down to his stomach because he was still having bowel movements. Not as fgrequent as before obviously, but he still had to go to the bathroom. He joked every time he would go to the batroom he'd would ckeck off a sign at the door he was planning on placing....Puke, Piss, Poop......hahahahaha....that's because everytime he got up when we were eating we asked......are you going to puke ???

And we were all tired and stressed about this.

July 30th,2014 was the day he had a Myatomy done. The procedure took about 2 hours. He had a Heller Myotimy with a Dor Fundoplacation.

You all know what this is im sure. Today is the 7th day after surgery.

He is doing very well. When he came out of surgery his face was puffy due to the air used to inflate the stomach. within 7 hour of the surgery that swelling started to go down. By the next day he still had puffyness under his eyes, but by the day we went home that swelling was gone.

His procedure was done on Wednesday July 30th and we were dismissed from the hospital on Friday August 1st.

The pain he has was normal pain associated with the procedure.

He had five incissions in his abdomen. and those are the ones that hurt.

He started eating liquids and THEY ALL WENT DOWN right after surgery. He said he felt the water go down to his stomach for the first time in many months. He didn't feel that water, food stuck feeling in his chest anymore. On Friday morning 2 days after surgery he had a very severe pain in his chest. This was due to gas. He couldn't pass gas. This was atributated to the narcodics he was given for pain. He did pass gas a few times on Thursday, but very minimal. That particular pain happened three times After surgery.Friday morning, Friday night at home and Saturday evening . He had the same barium swallow study done on Friday at the hospital to see if the surgety was working fine. It was. The sawllow he had went right through.

He's been eating very soft foods. noodles, sopus, pastas (very moist)

ice cream, chicken (also very moist chicken ) not fried, but little pieces of chicken in the noodles. Also rice he;s had.

He has gone to the bathroom normally with no problems. Not that he had digestive pronblems before, but bathroom trips are as normal as you might want after surgery.

We know all the risks and what might follow after this surgery, but it was really the only option he had due to his symptoms..

As soon as he came out of surgery he could drink and it would go right through without any problems. Dr. Takata who performed the operarion told us he normally shaves off 7 cm of the muscle fibers in the esophagus, but this time he did 9 cm. not quite sure what the reason for this was, but he did explain to us why. I just don't remember.

If any of you has any questions that I might be able to help with plrase feel free to ask me. This disorder is a bad one. it's incredibly stressing for everyone involved. As a Father it eats at you to see your kids go through this and not be able to protect them and help them.

The one thing I can tell everyone is that while this disorder is very bad, it's not going to kill you. The're options to fight this thing just have to keep faith and not give up. I will keep posting here to update my sons condition. I pray and hope he continues on this path and regains some sort of normalcy. OnlyGod knows what awaits us. Our job is to do everything possible to get better.

Good luck to all, and remember you're not alone. Your family is with you and that makes a huge difference.

God Bless.


13 likes, 151 replies

151 Replies

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  • Posted

    Hey OPA

    agree with your last post. Once you know this disorder is present one takes precautions that ensure your health risks to a minimal.

    two things we were told are facts. 

    1. Every person will be affected differently. What works for one person might not work for another.

    2. Achalasia can strike at any age. Although rare, it could hit kids as well as adults.

  • Posted

    Hi, thank you for telling your story about Achalasia.  I was diagnosed with Achalasia in 2011 and also had a Heller myotomy with Dor Fundoplacation.  The relief was enormous after suffering from it for 12 months. A barium swallow revealed the illness.  I have about 95% of my liquid swallowing back and 70-80% of solid swallowing.  (Breads and meats are still very tuff)  Whenever I get the flu my esphogus goes into lock down mode and I can then just get fluids down.  Achalasia is a tough illness but not deadly.  After 3 years, I'm still learning how to manage mine.
    • Posted

      Hi Aduppie,

      I would like to know if you suffered from severe chest pain before your operation. Also, what other symptoms did you have.

      Thank you

    • Posted

      Hello aduppie,

      great news on your outcome. Hope you do even better.

      thank you also for sharing your story.

      this helps all with this disorder.

  • Posted

    Thank you for sharing your sons story. It helps to know you not alone. I am happy the surgery was a success. I had mine done about 4 years ago. Its crazy how one day your normal and its seems the next thing you know your having this swallowing difficulty. I am glad I had the surgery and know I just have to be careful to eat slippery things and drink sparkling water alot. I also take zantac for heartburn. In some ways I eat healthier....But I do miss being able to chomp on a big hamberger.
    • Posted

      Hey pattison,

      great to hear  you're doing well. Hopefully you'll be able to enjoy 

      that burger soon. I know my son is going to try it. 

      I hope it goes well when that day comes.

      Really happy for you. 


  • Posted

    Hi R2351

    Could you tell me if your son suffered from chest pain before the operation. Also did he have dry heaving / gagging.

    Nice to hear he is now doing well!  

    • Posted

      Hello Merryl,

      he he did have chest pain, but it was only when he ate. He felt preasure on his chest and he had to make himself vomit to relief the preasure.

      he never had chest pain without eating. As for dry heaving and gagging, no, not really. It was basically eat and feel bad. 

      Hope that clears things a bit for you. 

      Best of luck to you.

  • Posted

    Hello to all,

    I told you I'd keep you updated of my Sons progress so here's what's happened in the last three weeks since surgery.

    we had our post operative doctor appointment this past Thursday.

    im am so greatful to God for letting things go this well.

    after the surgery my son ate soft foods primarily.

    we gave him pastas and after the first few days after surgery we started giving him chicken. Very moist with lots of gravy.

    Drinks everything except for soda (doctor said try and stay away from soda for the first few weeks) right after the doctors visit on Thursday he had his first hamburger in almost five months.

    evrything he eats goes down smoothly the pain he had (that we thought was gas) is almost gone. This pain came on for about the first week after surgery once a day . He would be just relaxing and the pain would come. 

    This pain started to diminish in intensity as tge days went by. As of today he's almost pain free.

    the last time he had the pain was two weeks ago. He's able to burp, and does make a noise he calls hik-ups as he eats, but other than that it's all good.

    doctor told us this surgery will work. The success rate of the procedure is based on many factors, but all in all he said this procedure is not one that stops working in the future. It should help him for a long time.

    he resumed normal activity after two weeks. Including helping us move a bedroom set so he feels pretty good.

    he did have pain after surgery foe almost a week, but slowly started cutting down on pain Meds to the point he was completely off the the pain medication.

    That's were we are at the moment. If you have any questions you think I might be able to help with please send them to me. I'll be glad to answer them as best I can.

    thank you to all for the support and hope you all are doing as best as possible.

    God Bless,

    • Posted

      Hi R2351

      Glad to hear your son is improving and hope he continues to do so. It must be such a relief for all of you. Telling his story could help others too.

      Best wishes

    • Posted

      Hey Merryl

      thank you so much for your well wishes. Hope you're doing well.

      You can't imagine the relief we all feel now that he's doing better.

      thank you again for your kind thoughts and wishes,

      God Bless

  • Posted

    hello to R2351. could you please indicate the name of hospital or medical center where your son had his surgery?  my son was diagnosed 4 month ago. we are helpless.
    • Posted

      If you are in England (and it is probably the same elsewhere) the Upper GI surgeons who will know about the condition are likely to be at the centres of expertise for oesophageal cancer (or bariatric surgery).   If you can get to London you might try Mr Majid Hashemi at University College Hospital.
    • Posted

      Hello Dalia,

      first let let me tell you I know exactly how you feel. But please believe me when I say....there's help out there.

      you just have to find the right place and doctors.

      my Son had his procedure done at Scripps Green Hospital 

      in San Diego, Ca.

      we live in San Diego. Dr. Mark Takata did the procedure.

      My wife works for Scripps as an RN so our insurance is for Scripps Doctors.

      please feel free to ask me anything . I'll do my best to answer your questions. I know this is a stressful situation for you, but don't lose faith.

      search for the right doctors, ask them questions and don't be shy about asking them what their expertise on this disorder is.

      By the Grace of God my Son continues to do well. All due to this procedure and intervention from this doctor.

      your Son will get help from this horrible disorder. 

      God Bless

    • Posted

      Thank you alan. I shall try to contact Mr. Majid Hashemi. hope he will help.

      thank you again.

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