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Living with achalasia.

Posted , 52 users are following.

R2351
R2351

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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  • Rocky1971
    Rocky1971 R2351

    Posted

    Thank you for sharing your sons story. As I write this note to you I am in tears because I know now that I am not crazy. I too had the symptoms of loud and painful hiccups, the sensation of having a knot in my throat and not being able to swallow. I had an endoscopy in December and since then my life has been on a downward spiral. I cannot swallow, even water feels like I'm trying to force down a whole grapefruit. If I eat, I must to make sure the restroom is clear and close by because it won't stay down. The only way I can get relief is to vomit my food back up, but I don't have to force it. It volunteers. The doctor has said over and over your endoscopy is normal, your biopsy is normal, leaving me to think I'm nuts. I've dropped 15 pounds since my endoscopy so I know it's not my imagination. I've gone to ER and back an forth to the doc with no resolution. I have a esophageal manometer test next month and I'm pretty sure from your story Achalasia will be the outcome. I kept searching the internet until I found this and it sounds spot on to what I've been going through. God Bless you and thank you again for sharing.
    • AlanJM
      AlanJM Rocky1971

      Posted

      The manometry test should be able to test the pressure of the muscles driving the peristalsis, or the contractions that would normally act in succession to take the food down into the stomach.   The other test that is done is a barium swallow, where you swallow white liquid that is then tracked on an x-ray machine as the liquid goes (or does not go) down.

      Try keeping up your nutrition levels by liquid drinks if you can.

  • Dinamomof4
    Dinamomof4 R2351

    Posted

    It was very interesting to read your story. I have something similar, not diagnosed though. Most of time it doesn't hurt, but then it will. Here are my symptoms: things feel like they get stuck at the base of my esophagus (liquid or solid) and will hurt like my esophagus is spasming. And then it will relax and I can feel the food/liquid go down. But the pain takes my breath away and I can't breathe or talk from the pain. I do get the feeling of acid reflux (was duagnised with GERD a few years ago. The symptoms I am having now are different than 'just' GERD. I also will wake up in the night with a 'hot' feeling at the base of my esophagus...not the inner burning of indigestion, it feels like I have a heating pad inside. I literally have to take the covers off that area, lift my night shirt up off that area and let it cool down. Oddest thing ever. My appetite isn't affected right now though. Some foods do burn going down when they hit that spot, but not many.

    Thanks for listening.

    Dina

    • AlanJM
      AlanJM Dinamomof4

      Posted

      You could try raising the head of your bed so that you sleep propped up?   And try taking Gaviscon at night.   When you are lying down, the stomach contents tend to creep along into your oesophagus more easily than when you are upringht during the day.   The Gaviscon creates a barrier for a few hours.
    • Dinamomof4
      Dinamomof4 AlanJM

      Posted

      Well, it happens when I eat or drink...the spasm of my esophagus I mean. It 'clenches' and causes pain. The 'hot' I described isn't burning like reflux at all. If you have ever used a heating pad, that's what it feels like. When I take the covers off and raise my shirt while still laying diwn, it goes away about 15 minutes later. I don't need to take anything for it. It is not like my GERD where I was taking prilosec for it. My esophagus does the clenching even when drinking water. There seems to be no rhyme or reason as to when it happens. I don't have alot of issue when I lay down really, just on the odd occasion here and there.

      Thanks,

      Dina

  • karsen31619
    karsen31619 R2351

    Posted

    Ok so I am 13 years old and ever since I got sick like 2 weeks ago I've had this weird bubbly feeling in my stomach and my throat my parents know and my parents and I don't know what to do should I get checked out? Thanks!
    • AlanJM
      AlanJM karsen31619

      Posted

      If it has gone on for two weeks, it is probably something more than the effects of eating something that upset you, so I would say Yes - see a doctor to get checked out.   Try and work out a timeline of when it started, what may have happened beforehand, what happens when you try and eat, and anything else you have felt.   Is the rest of your digestion working OK (eg when you go to the toilet)?   Try and work out whether where exactly the feeling really is in your stomach, as some people are a bit vague about this.   Try and give the doctor a really good account of the history of what has happened and how you have felt.

      ​If you try and eat but the food gets stuck in your chest, that is something that the doctor would need to investigate thoroughly - and achalasia might be one cause.   Some people develop this from childhood and sometimes get mistakenly diagnosed with eating disorders.    If the food and drink passes through into your stomach OK, it makes it very much less likely that you have achalasia.  

      ​If the bubble feeling is an excess of acid, you could try a pharmacist and take something like an antacid over the counter, to see whether that has an effect.  The doctor would be interested in this.   Something like Gaviscon, which is an alginate that creates a raft to prevent reflux rising from your stomach might also have a beneficial effect and is worth trying as an experiment.

    • R2351
      R2351 karsen31619

      Posted

      Hey Karsen,

      if if your symptoms are like many in here were you feel you need to throw up to feel better because food feels like it's stuck in your esophagus, then yes I would check into it.

      best of luck to you.

  • blakec
    blakec R2351

    Posted

    Hi there. I have a condtion which sounds familar to your sons. My issue is everytime i eat about an hour later i get very bloated and have to force my self to burp in order to feel better. when i do goto the washroom (constipated) or burp i start feelign better as if something is blocked and now its clear. But i dont get the pain in my throat, i mean its  a little bit there but nothing really. Everyday for the last 5 years i wake up feelign ok untill i have to eat then the pain starts.
  • ChrisB1967
    ChrisB1967 R2351

    Posted

    Hi Readin your sons history sounds very familiar me. I'm in Texas. I   was 32 when I first got this just this junk choking in the night and throwing up in my sleep. went to a gastronologist told I had acid refulx, too Nexium for a little while no imporvement, for the next 15 years I didn't seek help because I had little faith in medicine and seen no other people posting what I had, and to be honest I didn't was in denilal.;  Throwing up on a daily basis /night time basis whenever I needed was the norm, avoiding foods like ice cream or whipped cream, the norm. All fruit was forbidden as well. I sought treatment this year had the tests done to confirm achaliasa, the Poem method failed, had to haev the one with the five insicisons done but luckily it worked. I had ice cream pudding, whipped cream for my hospital breakfast and diced up chidken in smallest bites imaginable, it was all like a Thanksgiving feast.  I don't know how to react or to think and  I am in tears I'm not sure cold things feel cold in the stomach or I can't let myself think such a dream has come true but I do know that after eating the suffocuating in the past ice cream that I didn't sound ike I had asthma or that I was breathing like Darth Vader. My weight was 230 and at this time 165 I was told nothing by mouth while my esophagus had to heal from the Poem Method, a month has passed since then and I was in aftercare fascility in order for my esophagus to repair itself from the tear it got during the new poem method. I must say I am drinking the thick form of boost 360 calories as opposed o the thin form which still caused me to suffocuate.  I now sound like anyone else who eats and drinks and I am not used to it, nor even feel like it's real and don't trust it. I had surgery  2 days ago. I would love to talk to you further about your son and see how he is doing. I am a Christian and I am suffering from the pain of the 5 your son had, and the pain killer liquid does't help me sleep and I can't get comfortable I've been in a hosptial for over a month until yesterday.  God bless you and your son!  sincerely, Chris

    Achalasia is super hard and we are super tough to go thru this, and it feels like you are totally alone

    • R2351
      R2351 ChrisB1967

      Posted

      hello Chris

      my son is doing as good as expected. We knew this procedure was not a cure, but rather a way to help pass food.

      in that sense it's worked quite well. But there are days when the struggle is there, but he waits it out and then he can eat. He's maintained his weight at about 208 to 210 which was the weight he had when he had the procedure. 

      All le I can tell you is gang in there and keep asking questions until you're satisfied with the answers.

      if you need any specific info that I haven't covered here please let me know and I'll do my best to answer you. In the meantime keep the faith and remember there are people who can help.

      God bless

  • toni85559
    toni85559 R2351

    Posted

    Thanks so much for telling your son's story and being so gracious to

    everyone who needed this important information, especially in a way

    that they could understand.

    I have two questions for you.

    1.  Was your son diagnosed with diverticulosis of the esophagus at

         at any time during the investigation of his condition?

    2.  Can he still vomit?  I was told that after the fundoplacation surgery

         that it would be impossible and a real potential problem.

    Thanks for your time considering a response to me.  Toni

    • R2351
      R2351 toni85559

      Posted

      hello Toni,

      youre very welcome. As for your questions.

      1. No. He was never diagnosed with diverticulosis. In fact the doctor that performed his endoscopy said he found nothing and his esophagus was normal.

      2. You're correct. My son can't vomit. Once you have this procedure you're warned that this will be something that will occur. As for the inability to vomit being a  problem, quite frankly we have not ran into it. And we are talking about a 21 year old college student invited to party's etc....we're drinking is pretty much a normal thing. Not being able to vomit has not been an issue at all except for one day recently when he drank too much celebrating his girlfriends birthday and he couldn't vomit after the fact.

      to be honest it helped seal the deal with him that drinking is not a thing for him, not to the point of losing control anyway. 

      Hope this his helps you and if I can be of any help please let me know.

      take care,

  • giselle925
    giselle925 R2351

    Posted

    Hello I'm 17 years old and I'm going through similar things like your son I have difficulties swallowing and when I do I have to run to the bathroom and trow up since it gets stuck in my throat ,also every time k try to burp I trow up or if I drink plenty of water I get blown up and need to trow up or sometimes I have to make my self trow up so I feel comfortable without that feeling of having something stuck in my throat I haven't been to the doctors because last time they didn't care so I felt like they waist my time if I go but hopefully someone can tell me if this is similar to this disorder or no

    • AlanJM
      AlanJM giselle925

      Posted

      Do you think that the food is getting stuck in your throat, or further down in your chest just above your diaphragm?   Sometimes, and we do nto know whether this is true for you or not, the valve by your diaphragm remains shut and then the more you eat and drink, the greater becomes the pressure until you regurgitate / are sick.   Can you tolerate drink in the normal way?

      ?It is not uncommon for young people to be mis-diagnosed with an eating disorder:  the issue is whether you want to eat or not.  It may be that food and drink is accumulating in your oesophagus and that is why you feel uncomfortable.

      ?If it is a problem of achalasia, it is caused by the nerve endings not driving the muscles properly that control the peristalsis, or the swallowing function.   So I think it would be worth going back to the doctors and ask for a barium swallow test first of all.   There may be an element of tension and stress in your system that makes it worse, but it is only a proportion of it and not the main problem.   Tell the doctor that you do want to eat and that you are not having some sort of bulimia type problem.   Try and work out a timeline of when the problems started and whether it is all food or just some that cause you problems. It is important that young people's complaints do not get dismissed by the doctors;  you couild consider having a supportive parent / relative go with you?  Meanwhile eat small amounts of soft food and let that go down first.   There are some other motility problems that it might be other than achalasia but it will need a specialist to sort that out

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