Living with achalasia.

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R2351
3

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.

 

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  • R2351
    3

    Posted

    One correction. I wrote my son had 9 cm shaved off from his muscle fibers in his LES, but that might be wrong. It might be 9 mm.

    Will ask the doctor in about three weeks. That's when he has his post operative doctor visit.

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  • Posted

    i had my op november 2011 and the problem i have now is i cant even lose weight not even a  few lbs - my gp told me this is normal for the first few years after surgery as my body is still in recovery mode.

     

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    • Posted

      I thought the surgery made you lose weight, also isn't your stomach made smaller?, I'm due my surgery next month, hope it all goes aswell as yours.
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    • Posted

      I think it would all depend on the details of the surgery.   If you are having a 'wrap' to create a valve effect (which is normal) then this probably would reduce the size of the stomach to some extent.  The surgeon will tell you.

      I think that having an achalasia problem is more likely to make you lose weight because of swallowing / motility problems not allowing food to orogress through the system properly?   Then, the corrective surgery allows more normal passage of food which would be more likely to lead to weight gain.   But it is nutrition that counts, and I would not worry about weight as such.   You may have to eat 'little and often' for a while.   Again, the surgeon will tell you, as they will know the precise details of your surgery.

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  • Posted

    Thank you for telliong your son's story so well.   I think that the deterioration he suffered is in some ways typical of how achalasia can develop;  and it does show how getting to the right experts to do the right procedure can change things dramatically.
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  • Posted

    OMG, I had no idea someone that young would be going through all that.  Thank you for telling your son's story.  I had the exact same surgery, but mine was caused by a lap band being too tight and food building up in the esophagus for years.  I wonder if your son took part in eating contests or ate so much food in binge eating that it started storing in his esophagus?  Did he have constant coughing?  I did and still do, 1 month after surgery at Mayo Clinic.  I was told I had no more peristalsis and food and liquid would have to go down by gravity.  ALso, the muscle or sphincter holding contents back in the stomach after eating was dead, so that is why they formed a new muscle in the Dor Fundoplication.  I don't have food coming up anymore, and my voice is not too hoarse anymore.  But my surgeon told me I still may have GERD as it doesn't always fix that.  At least things are better.  But you should know that this CAN kill you.  The longer stomach acids come up and ravage the esophagus, it can develop into Barrett's Esophagus, which is pre-Cancer.  Once all is "fixed" by surgery, only time will tell whether the damage done will heal on it's own.  My best wishes to you and your son, for a happy and healthy life!
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    • Posted

      This is not a condition that is caused by 'binge eating' as you speculate.   It is to do with nerve endings that do not operate as they should do to operate the peristalsis muscles, and it is not self inflicted.

      Reflux, along with other things, can cause coughing and a hoarse voice

      Whist it is true that prolonged exposure to acid reflux can result in Barrett's Oesophagus that carries a risk of dysplasia that can turn into adenocarcinoma, the risks involved for achalasia patients are small.   The priority is to get a proper diagnosis, a good procedure aimed at the precise cause of the problemand undertaken by a recognised expert, and then deal with any long term effects of acid reflux as a separate issue.   I would not like to think that achalsia patients, who have enough trouble as it is, would be panicked by the small risk of cancer.

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    • Posted

      No, I'm not speculating.  I'm sharing what my surgeon told me was the cause of mine and a lot of other patients they've seen who have had the lap band. The binge eating question was the only thing related to what I knew (food being stored in esophagus and stretching it out.)  I would not like to think that you correct everyone who posts in these forums holding them to your personal standards of what should and shouldn't be shared. I'll not follow this discussion anymore as I can see you have it under control.
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    • Posted

      Hi AlanM

      Could you tell me if achalasia and dismotility are the same or completely different things. I was diagnosed with Dismotility about 5 weeks ago after a barium swallow, and my Dr said it is not bad and unlikely to get worse. I have severe chest pain most days but also have ectopic beats so don't know which is causing the pain. I also have an hiatus hernia which I have had for over 20 years and was told that the hernia is mild. So between them all I am having a rough time at the moment with the symptoms.

       

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    • Posted

      I stand corrected and would not wish to challenge your own situation, or particular causes for the prob;ems.   I wish you well.
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    • Posted

      Dismotility has a number of forms, as I understand it, of which achalasia is one.  

      The pain may be from the spasms - and it might be worth thinking about buscopan for it;  but the acid reflux might also create heartburn.   If you take gaviscon and the pain subsides, that might suggest that it is thre acid reflux, but you really need the doctor's advice for the pain.

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    • Posted

      Thank you for your reply. I was hoping it was not achalasia. I have not been told that I need a follow up appointment at the hospital, so don't know where to go from here.

      I will try the buscopan and hope it stops the pain. I am on 30mg lansoprazole and it stops any acid coming up but the gaviscon don't work as well. I was in hospital 8 weeks ago for 10 days because of the chest pain. I had several ecg and they came back normal so it could be the spasms causing it.   

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    • Posted

      If you have achalsia I think it could be the spasms causing the pain.   People describe it like a heart attack, and that people get very worried witnessing it, and indeed that doctors do not always come across achalasia pain to diagnose it well.   But, having said that, if you have severe chest pain it has to be investigate anyway,
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    • Posted

      Hi Meryl! My name is Roz , I have a hiatus herrnia and have had all tests and they think I have swallowing difficultly but my wet swallow result was none existent , but my food swallow was good , they aren't doing anything for me , I've had all anti acid medications , I only have gaviscon tablets after food and I'm using hot water bottle only on a night time for pain in my chest ! Daily it's a real drag , I'm finding I don't mention it now as people are sick of hearing that you have pain , I'm concerned that it will go on , the consultant said that these things can improve , but I'm unsure , would be fearfull of food not getting down or sticking ! Well read your post and we seem similar if you have any tips I would love to know so it can help me at work to cope , I'm a busy hairdresser , with two busy children , I talk all day and it's worst at work , was wondering if talking and stress could make it worse ! Does it with you. ! Chest pain , thanks Roz 
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    • Posted

      Hi Rosslyn, I am sorry to hear you are having problems swallowing. Have you been told you have a dismotility problem. When you have this it usually means that the food gets stuck in the oesophagus. Am I right in saying that food goes down alright but drinks don't go down? I have'nt heard of this.

      I have a mild hiatus hernia which I have had for a long time. As long as I take Lansoprazole I don't get much trouble with it but if I forget my tablet I get a lot of acid. This don't happen very often. The chest pain I get is nothing to do with my hernia. Gaviscon is no good for me it does'nt get rid of the acid but lansoprazole works very well. If I was you I would ask your Dr to prescribe Lanso for you especially since you have a hernia you might feel a lot better then.   

      I was diagnosed with a dismotility disorder about 6 weeks ago after a barium swallow and the Dr said it is not too bad. I have lost a lot of weight since this started and am trying not to lose anymore but it is not easy because of the swallowing problem.

      Hope you feel better soon. Let me know how you get on.    

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    • Posted

      I can swallow normally and I'm pleased about that ! It's a worry ! My wet swallow result was poor not much reading , I have been told by the consultant to drink fizzy water before each meal as this speeds the food down and opens the sphincter at the bottom of the oesophagus , which helps sometimes , but the pain in the middle of my chest is awful it never really goes like a dull ache ! My lower sphincter was working fine after the results , so the consultant said it wasn't an acid related problem as no acid was coming back on the 24 hour test with the tube ! Which had led him to think it's more an swallowing issue , maybe spasm ! He never really said what it was and said he thought there was room for improvement with these things , in women of my age !! 42 !! Ha  ! He asked if I had children and was I stressed ! I think they all think stress , but as I said to two different consultants I have ran my own business for 22 years , and I've always felt as if I manage things okay facing things head on. !! So I not ruling out stress though ! I'm looking at alternative treatments to de stress in the mean time , but it's all just looking to get rid of the burn and pain ! I have to go back in 1 year , so I'm trying to keep positive ! Hope you feel better soon too ! Cheers Roz 
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    • Posted

      Hi, My swallowing is okay but the food sticking in my oesophagus is a problem but it does'nt happen every time I eat, but no problem with drinking. I was'nt offered the manometry but it seems most people have this done. I think I will try fizzy water to see if it helps. Perhaps your chest pain is caused by spasms of the oesophagus. It must be awful trying to work as well with that going on. It is a nuisance because we don't know if it will get worse or maybe improve. I asked my local Dr if mine will get worse and he said he don't think so because I have had it for a long time. I can't eat lumpy food such as meat and I don't think I will be able eat it again. I stick to the same food that does'nt cause a problem. 

      Have you had an endoscopy and a barium swallow?

        

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    • Posted

      Hi , I haven't had a barium swallow test yet  had cameras down which had first detected the hernia you see ! It's the sore chest ! But I know how you feel it's a worry not knowing if it will get worse that's the thing ! You try to  get on but it's always there pain wise to remind you , I sometimes feel as if it's sore when I eat inflamed ! I've been gluten free for a while and that's much better ! The fizzy water is good , reduces the pain a little ! So as you put it ! It's what we do to get through the days ! Now it's me hot water  which stops me from reaching out for the codeine , I was doing that night after night which was great ! But no good as I couldn't go to the loo !! So it's the hot water bottle for me !! The things we do ! 
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    • Posted

      Hi, I would have thought if your chest feels inflamed you would need Lansoprazole, this normally helps with the burning feeling. As I said before Gaviscon don't help me at all. It lasts about an hour and then the acid comes back and when it is bad it burns my chest / throat.

      I have read online that a Barium Swallow shows if the hernia is small or large. If large they would operate but not on small ones. I was told mine is mild so I take it that means small. My chest has been playing up yesterday and started again today after eating breakfast.I could not eat my tea yesterday so just had complan. It feels as if it is going to play up all day. Trouble is, I don't know if my hernia is playing up or the dismotility problem and my weight is going down again, which I don't want..  

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    • Posted

      That sounds like small but painfull hernia ! No relef today it's so sore today ! Hopeing to go back to docs and see about some pain management , it's got me sad at the moment and it's not like me ! Wish I was back the way I was ! You been sore ? Off for a bath up to my neck as that helps ! Thanks 
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    • Posted

      My severe pain is located between the breast bone, radiating around to my back. I’ve had pancreatitis (autoimmune pancreatitis, I don’t drink alcohol, never have) and it is the same pain in the same place, therefore doctors always thought I was having pancreatitis or a bile duct attack (I had dilated bile and pancreas ducts). But when they’d check my blood work, my lipase was normal. It wasn’t until the barium swallow test, 3 EGD endoscopies, 2 EUS endoscopies, a esophageal manometry was I diagnosed with Achalasia. I lost down to 88 lbs but have managed to gain my weight back to 108 by drinking (slowly) protein drinks and soups. It’s painful. But I couldn’t get POEM done because I was too malnutritioned. So now I go back to GI Specialist and hopefully get the POEM scheduled with a different surgeon. 

      It’s such a crazy, mixed up journey. Specialists arguing or disagreeing on which procedures will be best for me. I had the balloon dilation during my last diagnostic endoscopy but it didn’t help at all. I don’t have heartburn, never have. Just pain trying to swallow and get liquid down and through the bottom of esophagus or just all out throwing up. It came on fast. I feel for her son, no one should have to go through this. 

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