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.

 

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  • Posted

    Hi all I just wondered if anybody could help me out as I have Googled my symtoms and come up with this my grandad died on 23rd febuary after not feeling good all day very shortness of breathe ect I obviously cried a lot I got home and found it hard to swollow for months nearly a year before this I realised I regurgitate a lot the food get stuck in my throat aswell or chest anyways it calmed after a couple of days and I was back to normal .

    Then 3rd March it returned I can not swallow my salava and I start to panic as you can imagine it's very frustrating and I have health anxiety this now is still going on since the 3rd March it has not stopped like before I can drink and eat but food gets stuck in my throat/chest still and I get pressure as it goes down slow my family think it's grieving and stress but I have never heard of anyone have this from grieving .

    I do have reflux but I'm only 22 and not been able to swallow is making me feel so depressed I have not been to doctors yet I'm too scared to be honest my doctor are not very good it's either send you straight to hospital where they tell you to go back to doctors or they ignore it all just depending what doctors see's me does this sound like this that you guys are on about sorry for writing it on here but sounds like you all know it very well .

    • Posted

      First of all, my condolences.   Grief can take on all sorts of physical manifestations.  I think I would write down a timeline of what you have been suffering.   The chances of it being anything malignant are remote at your age, but your age is also a factor in taking what you say more seriously 
    • Posted

      Hi I'm Darius, age 20. Sorry to hear about your grand dad mate--loosing someone's hard. I'm at uni but not pre med or anything so can't give med advice but I got anxiety disorder. It causes tha same kind a thing you said. Throat gets so tight cant swallow at times. If you can find a doctor you trust I think it'd be good. I had a bunch of tests & was real scared of it but there's nothin showed up wrong. I also get some reflux but theu gave me some meds. I wish you all the luck but I bet you're gonna be ok. Just gotta makw thw first step. My girl friend went with me to the doc & that helped. Take care then!
    • Posted

      What you describe is not normal.   Yes, initially it could be some form of grief reaction, but I would set down clearly how long you have been suffering from the reflux and so on.   I think they should give you a barium swallow test at the hospital and an endoscopy.   You are not too young to suffer from achalasia, because sometimes children can suffer from it.    The doctors should be able to help you, but you do need a definitive diagnosis.  It might be a hiatus hernia perhaps.  If you have had an endoscopy and they rule out things like stomach ulcers etc. then it would go to the next stage of possibly being achalasia.   If you have had a lot of feflux for a ling time you might have something like Barrett's Oesophagus which is not a problem in iteslef, but long term you would need to be monitored because of cancer risk years ahead.   I think it is better to have the tests and to have a proper diagnosis now rather than worrying too much and scaring yourself about what the outcome might be without doing any tests.     At least you will be reassured if it is something that is less serious and treatable.   You could go to your GP and ask them exactly what the hospital reports  have reported back.   The  ask the GP if they can wrok out another route to have the tests if need be if it is the hospital that is creatig the problem.
  • Posted

    Hi Stephx - Sorry to hear about the passing of your grandfather and now your health issues.  I think you should request to be seen by a specialist in the gastroenterology department where they specialize in digestive issues.  A simple test called a barrium swallow will show whether food & drink are going down to your stomach when you swallow, or it it is getting stuck in your throat.  Once the doctor can see on film, that things are getting stuck they can order 2 more test to see why.  1 is and endoscopy where they put a camera down your mouth to your stomach and look around to see if there is an obstruction, stricture, or any kind of disease showing.  The other is a manometry which is the GOLD STANDARD to diagnose achalsia.  It measures whether your muscles are working properly when you swallow, or whether the swallowing muscles work in a chaotic spasmy way, or whether they don't work at all.  It will also tell whether your LES (Lower Esophageal Sphincter) is working.  The LES is like a door between your stomach and your throat.  If it is stuck closed, you can't swallow food or even saliva because it can't get thru the doorway.  So the definition of achalasia is that your doorway (LES) is stuck closed and your esophageal muscles don't work properly to push food down to your stomach.  I belong to a support group for achalasia on facebook and have found that almost all of us agree that we have a harder time when we are under physical or emotional stress.   If you are too tired,  too hungry, sick, injured, grieving, etc then our symptoms are worse.  Just as people with Parkinson's or Multiple Sclerosis will have flare ups when their body is under stress, we do the same.  So I think you may be having that make your situation even worse.  Please be sure to stand up for yourself and don't let anyone tell you that you are only grieving.  Insist on the barrium swallow, tell them that even your saliva won't go down.  You know your own body and what it is like to live in it, so be firm and be your own advocate and be sure to have a swallowing study done as outlined above.  Please think about joining our group on facebook called "Achalasia Support Group" because there are lots of people there to help you, listen, support you, over advice, compare symptoms, and suggest doctors.  There are members there from all over the world.  Hope you find a good Dr, diagnosis, treatment and relief very soon. !
    • Posted

      Thank you so much I can't get a doctors appointment until tomorrow obviously because it's Sunday but I will mention all these tests I do have anxiety too and a lot of people have said this is a symtoms but normally lasting a couple of minutes not a full week .

      I have been having muscle shakes aswell constantly and I do feel my throat spasm so maybe It is a throat spasm constantly only time will tell im sure I will have to wait months to get these tests but I will ask my doxtor tommorow if it comes to it may have to go private even though I haven't got the money because it's very distressing I can't imagine how you all feel because it will be diffrent for everyone on how they cope but I know it's scaring the life out of me and adding more stress thank you for your great advice xx

  • Posted

    Hi, my name is Perry. Thank you for sharing your son's story. It helped me a lot. I want to share my story now, hope it helps others. I am 51 years old and I was diagnosed with achalasia in April 2014. I did a ballon dilation in January 2015. It didn't help me at all, so I meet with Dr. Takata in March and he told me that I need to do the surgery ASAP. My surgery was operated  on March 23rd. It has been 7 days since I have done the surgery. I am still recovering, but I can see the difference. I can swallow with no pain. I am in a Nessan diet and should eat soft food only. I feel so much better now. Dr. Takata is the best surgeon and he is working  in Scripps Green Hospital San Diego CA. My operation took 3 hours bcease the stretch made by ballon dilation had caused problem and the doctor had to spend more time to fix it. I had pain for three days after the surgery and had to take pain medication. After three days I didn't have any pain and I am going back to work tomorrow. If you have any question please let me know. I would be more than happy to help.
    • Posted

      Hi Pkooh

      Can you tell me what type of pain was you getting before the operation and did you get the pain when you was'nt eating. I have just seen a gastro Dr a couple of weeks ago and he wants me to have a manometry for 24 hrs which I am reluctant to have because I hate anything down my throat, it makes me gag a lot. What kind of tests / scans did you have for them to diagnose achalasia.I have had an endoscopy, barium swallow and having a CT scan 4 weeks time. The Endoscopy was okay and the Dr said I got a dismotility problem but it is not too bad I was told this 9 months ago after the barium swallow.

    • Posted

      Hi Merryl,

      No, I didn't have pain when I wasn't eating. I did the esophageal manometry test and it took less than one hour, they sent a thin tube through my nose into my esophagus and asked me to swallow water and applesauce, 10 sips of each. Immediately after I finished the test they told me that I had Achalasia. It didn't take 24 hrs. I didn't do any scan. I only did Endoscopy, barium and manometry test. It has been more than two months since my surgury and I feel very good. I can eat almost everything with no pain. 

    • Posted

      Hi Pkooh,

      It must feel great to be able to eat properly after your operation. I asked the Dr if I could have the manometry test that they carry out in the hospital but he said no, he wants me to have the 24 hr one. I would prefer to have it done in hospital.  Can you describe the pain that you was having. The pain I am getting is severe but only lasts for seconds. It is nothing to do with heartburn because I don't get that now because I have been on lansoprazole for years and it stops the acid coming up. I have'nt found anyone on this site that gets the same pain as I do. Hope you continue to feel well.    

    • Posted

      Hi Merryl,

      Yes, it is great. I couldn't eat for three months and I lost 18lb.I had problem with swallowing food. Basically food didn’t go down to my stomach. The food stuck in my esophageal and didn’t go down to my stomach. It was painful and sometimes I had to push myself to throw up. I couldn’t even swallow water. I had pain in my chest.

       

      Where is your pain? Do you have pain in your esophageal or in your stomach? If you have a sever and sharp pain in your stomach which last for few minutes, ask your doctor about H.Pylori  bacteria. This bacteria makes whole in your stomach and caused very sharp and severe pain. I had the same pain last year and I was positive with that bacteria. My doctor gave me antibiotic and it helped.  

    • Posted

      Hi Pkooh,

      Thank you for your reply. I had H Pylori about 2 years ago after an Endoscopy. My Dr said I had inflammation and H Pylori and a small hiatus hernia which I already knew about because I have had it for years. They took a couple of biopsies as well which was clear. I was put on antibiotics and a year later had a stool test and I was told HP was clear. I suppose I will have to wait for the tests to see what is going on. Hope you continue to make progress.    

    • Posted

      Hi Pkooh

      Sorry for all the questions, but I forgot to ask did you get a lot of burping/wind and bringing up white frothy bubbly stuff. When I get the severe chest pain I find that if I lean forward slighly I give a loud burp and the pain goes until the next time. It only lasts for seconds but severe.  I have not read of anyone on these sites having these symptoms.      

    • Posted

      Having the white frothy stuff can sometimes be helped by a medication called Domperidone, but you need to consult your dostcor first - and you need to take it carefully at a set point before eating I believe.
    • Posted

      Hi Alan,

      Thank you for your reply, but I think I have been on this medication before and I had bad side effects with them.

    • Posted

      Yes, I had a lot of those white frothey stuff, but I never took any medication for that. 
    • Posted

      Hello Pkooh,

      glad to hear youre doing better. My son also was under Mark Takata at Scripps Green. He seems to be very familiar with this procedure.

      thanks for sharing.

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