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
R2351
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Will ask the doctor in about three weeks. That's when he has his post operative doctor visit.
clinton69 R2351
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explayboybunny clinton69
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AlanJM explayboybunny
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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.
AlanJM R2351
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gypsarella R2351
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AlanJM gypsarella
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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.
gypsarella AlanJM
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Merryl AlanJM
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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.
AlanJM gypsarella
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AlanJM Merryl
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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.
Merryl AlanJM
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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.
AlanJM Merryl
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rosslyn21419 Merryl
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Merryl rosslyn21419
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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.
rosslyn21419 Merryl
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Merryl rosslyn21419
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Have you had an endoscopy and a barium swallow?
rosslyn21419 Merryl
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Merryl rosslyn21419
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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..
rosslyn21419 Merryl
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emusedone AlanJM
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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.