Living with achalasia.

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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

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  • Posted

    I sit now in my bed in Tears, I have been going through the exact same systoms as your son. However everything happened after a minor surgery in which I has some incubation used.  I am so thankful , that you shared his strory I feel this is what I am going through and now I have a since of direction and know now what test to ask for . I have explained to the Dr. I feel like I have a wave turning in my throat and it not allowing the food to go down. I have endoscopy and it has come back fine. Went to the ENT he told be everything was fine.At this point I can't even eat soft noodles soup, and have lost 10 pounds .  I am hoping to get through this today and hopefully can get an appointment in the morning.  I can't thank you enough for sharing,  
    • Posted

      CTina,

      you are very welcome. The reason i shared this was to try and help anyone that was or is going through this . My son as you probably know by now if you read my dtory also had an endescooy and it came back fine. That test will not show the problem thwt your having, if indeed its achalasia.

      you need the other studies done to get the right diagnosis. 

      They basically insert a small tube down your throat that measures the preasure in your esophagus. That will tell the if you have a blockage.

      if you have any other questions please let me know. Im here to help as much as i can.

  • Posted

    Quick update on my Son.

    all is as well as it could possibly be. He has a few days were food is a bit slow to go down, but he just waits and eats a bit slower.

    other days are so good that he forgets ge gas a problem.

    all in all its going very well. He still makes tgat wietd sound that sounds like a hick up or burp at the same time, but thats about it.

    if anyone has a question or concern please let me know. I hope this helps someone. As always wish everyone the best and remember. This disease will take a lot from you, but there is help. You just have to know what to look for.

    God Bless,

    • Posted

      Hi R2351,

      I have spoken to you on here before but don't know if I asked you if your son was bringing up white frothy bubbly stuff, before his operation? Also I have been told by the Gastro Dr I will need a 24 hr manometry test, did your son have this to diagnose achalasia. I have read that this test is not very nice and I gag a lot if anything goes into my throat. How did your son manage to cope with it, if he had ths done.

      Thank you  

    • Posted

      Hello Merryl,

      when my son was having his problems he made him self vomit to relief the preasure he felt in his chest.  Dont recall him having that particular symptom. 

      As for the test youre talking about. The test you are describing he had for a few minutes.  Once tge nurse told us he had achalasia due to the preasure she saw on his esophagus   We took that thing out. The test you describe is to see if you suffer from acid reflux. In his case that was not his problem.

      when we went back to the doctor we told him we took that thing out. He said thst was fine because tgey already knew shat he had.

      hope this helps you. Best of luck to you.

    • Posted

      Hi

      Hi,

      Did your son have the manometry done at the hospital and then went home where you took it out and how long should it have been left in before you took it out. If they found the acid so quickly I don't know why they leave it in longer than necessary. The Dr wants me to have it for 24 hrs. I would prefer to have it all done at the hospital and I believe it only takes half hour. 

      Thank you

        

       

  • Posted

    Hi 

    I had the manometry test last month , it lasted around 20mins and was not to bad , the tube they used was very thin and did not feel to uncomfortable .

    The test was to see what the pressure inside my oesophagus was like when I swallowed . In my case it was very poor .

    Hope this helps and good luck 

    John

  • Posted

    hi i am currently having the same symptoms now. i am waiting to get my surgery done. but the surgery they are doing on me is called POEM. i know how your son is feeling it is not something i would anyone to experience . i am glad he is going good now. all the best . 
  • Posted

    Helo to all,

    Sorry it has taken me awhile to get back in here and post news on my Son's condition.

    Well, not much has changed. Everything is going as well as could be expected. He has days when it takes a bit longer to pass food, but we're used to this situation so we don't feel theree's an issue.

    The one thing I can add is that when my Son has snacks....chips, peanuts, pretzels, etc. they all go down normally.

    When he feels he'll have a tough time passing food and has a drink to help it go through it makses things worse. it takes random time to get going again. Sometimes 5 minutes, other times 40 min. it just seems to have a mind of it's own.

    Drinks by themselves are NEVER an issue. They always go down smoothly.

    We know that this is my Son's life now and we simply go with the flow.

    We spoke to doctors and they all say the same thing. It's an issue he'll live with forever. He does go for weeks when all is completely normal, so this disorder has a mind of itself.

    Hope this helps anyone dealing with this disorder.

    I'll leave you with this.

    There's help out there. No matter how little you know about this disorder, there are doctors who can help with this disorder. Don't give up. Seek information from any source no matter how little it might be.

    If I can answer any question please let me know. I'll be happy to help.

    God Bless

  • Posted

    God bless and good luck.  As having the same symptoms and remedies at the age of 60, I can attest to the fact that life is better but it takes good management as you already know.   Ive been 4 years now since the surgery and all is fine.  Possibly at an early age when the body is stronger, a fairly normal life can be lived. My only real nit is that I cant eat after about 5 pm each day to manage the night.  I have no other side effects except occasional GERD when I overeat and dont watch things.  I have gained weight so eating has not been a real issue.  We dont know what lies ahead so live each day with a smile and make someone else laugh....you all will feel much better.     
  • Posted

    Hello,

    I have a 26 year son and he has something that sounds like your sons syptoms. My Only issue is he doesn't have it all the time. There are sometimes when he can eat regularly and his food stays down just fine. But there are other times where he eats and nothing will stay down. I was in nursing for 25 plus years and it seems as though this doesn't happen to him as long as he doesnt drink alcohol. But when he drinks for a few days, it hits him and when he stops the symptoms go away. What do you think? Have a Blessed Day In Jesus Name

    • Posted

      If he has not been drinking and things go down OK then that is a good thing achalasia-wise.   It might be that the alcohol has a specific effect on this stomach.   If he went to the doctors they would probably advise him to stay away from alcohol, but to return if that did not work, and one can see the logic of that approach!

      There is an argument that alcohol causes reflux because of its effect on relaxing the lower oesophageal sphincter valve between the oesophagus and stomach, so there could be a more medical explanation perhaps.

  • Posted

    I've had Achalasia for over 20 years and find that I have good periods and bad periods.  I do know that I have much more trouble whenever my body is under a stressor.  If I am ill with something, over tired, over hungry, facing a big project at work, keeping horrible hours, etc.  Those types of physical stressors will set me off for a bad spell.  I am not much of a drinker, but I would imagine that alchohol consumption might act as a stressor for your son.  Especially if he is having more than one or two drinks with dinner.  Hope this helps.

     

    • Posted

      The ganglions on the end of your nerve system around your oesophagus are likely to be causing the achalasia, and the tension and stress in the verve system generally is likely to have an adverse effect.

      You have to live your life though, and it might be worth trying something that would help your system to relax as best you can fit it in with what else is going on in your life.

    • Posted

      Thanks OPA_AlanM - I do have tricks I use to get thru my rough patches.  Was just hoping to help three2718230 to understand why her son's flare-ups might be happening
    • Posted

      Thanks, and I appreciate your helpful spirit.

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