Living with achalasia.
Posted , 52 users are following.
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
M456 R2351
Posted
I was wondering how your son is doing now?
Did he need some lifestyle changes after the surgery?
Also did he have any complications/ side effects after the surgery?
Did you consider endoscopic dialation before opting for the surgery?
Thank you.
R2351 M456
Posted
Hello M456,
my Son is doing as well as we could hope knowing what we know about illness.
he has good days, he has bad days. We've learned to live with this as best as possible. L
Even in the bad days he waits it out and he can eat.
Id say there's not been many changes since he had his surgery, which all things consider d it's a god thing.
As far as complications after surgery...No. there were none . Soreness which was normal , the occasional pain in the area where the scopes were inserted, but thats
about it. All that went away in a matter of a few weeks.
as far as diet changes. My Son loves food..who doesn't ...hahahaha
so there are a few things that he can't eat that primarily consist of heavy grease foods.....but he really eats everything.
Dialation. We did our teaser he and we quickly eliminated this option because of the risks and the poor effectiveness . But by no means do I advocate people not doing it. Everybody is different and have different opinions it just was not for us.
The specialist we saw also sighted with us that dialation was not an effective method of treatment due to past results.
in short, this procedure gave my Son his life back. Like I said, he has good days and bad days, but the doctor that did his surgery was very honest with us.
He said this procedure does not cure anyone of this illness. What it does is help them have as normal life as possible. And that's exactly what we've experienced.
hope this helps you, and if you have any other question please let me know and I'll be happy to answer anything I can.
best of luck to you and hope you get better soon.
rebecca111213 R2351
Posted
susan12205 R2351
Posted
Your article was so helpul!!Thank you for sharing and glad to here your sons outcome was so good! I'm going to Dr next week i have the same problem...but she referred me to a heart specialist and than a gastro dr..I'm going to talk to both about your article because it sounds so like my exact problem and I was pretty much just written off by gastro dr and subscribed omeprazole and now it doesn't seem to work unless I take 4 to 6 after meals..can't b doing this....so tx! God bless!
R2351 susan12205
Posted
im glad it helped you out a bit. Hope you get all your answers.
wishing you the best going forward. If you need to ask me anything, please feel free to ask as many questions as you want. We are here to help.
God bless
joan99286 R2351
Posted
1. How to distinguish between esophageal spasms and food just getting stuck vs reflux?
2. Have others had trouble getting relief after surgery?
3 Does anyone have good MD recommendation in Los Angeles region who treats people like people and not lab specimens? (sorry, a little cynical!)
omid25242 R2351
Posted
thanks for your son's story,
I would be really appreciated if any you my some helpful tips. I was diagnosed with Achalasia (Stage 2) by checking my Manometry and Endoscopy tests.
I vomit Water every day.It comes out fast and from both my mouth and noise. It happens even I do not drink water or etc which it seems to be my saliva.
Some days it happens less than other days. I can not understand it's pattern. could you tell me did it happen for your son ?
AlanJM omid25242
Posted
I think part of the answer may be not to overload things, and to sip water, not taking another sip until it has passed through into your stomach.
michelle65123 R2351
Posted
Hi! I have been dealing with an eating issue for the past two and a half weeks now. I have a constant lump in my throat, and when I try to eat solids it gets stuck. I've been to the er numerous times, they just did an soft tissue xray, and an mri but said nothing was wrong. I have my follow up appointment with my doctor in the next couple if days, but the last day or two has been horrendous. I have now added the feeling of throwing up to my list. Been taking heartburn pills for the last couple of weeks as that's what all the drs assume it is. I am going to ask achalasia because this is horrible. I can't eat anything and this feeling is quite annoying. Thank you for posting this, and everyone else's replies. Makes me feel that what I have is real.
AlanJM michelle65123
Posted
There are various sorts of motility conditions, of which achalasia is one. Achalasia is usually associated with food getting blocked at the lower oesophageal sphincter, by your diaphragm, and it sounds like this is further down than what you are describing.
If what you are throwing up is vomiting, it has come from your stomach, and is semi-digested food, so that suggests that food does get though to your stomach OK, and this makes achalasia less likely. If the food you are throwing up is chewed up (a bolus) but not really digested at all, it may be regurgitation, which suggests that the problem is much more related to the oesophagus.
I am assuming that it is not some form of adverse reaction to heartburn pills, but one thing you could try is Gaviscon Advance, because that works to supplement heartburn medication and should not affect their effectiveness.
It could be a number of things like some form of allergic reaction, so it might be worth taking some form of allergy test. It may be that your throat has become sore and sensitive for some reason.
There are other tests like a barium swallow test (drinking white fluid by an x-ray machine); and an endoscopy(miniature camera down your throat) which might give useful information.
This is all non-medically qualified speculation by the way.
Meanwhile drink plenty of water, slowly, and have liquid food like soup.
robin96076 R2351
Posted
Thank you for telling the story it was very informative. I actually have the same condition and I’m looking to have surgery. I live in New Jersey but I am going to California and I’m going to look up your doctor I really appreciate you putting this on the Internet thank you. Robin