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
dalia16306 R2351
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AlanJM dalia16306
Posted
I am sure that Majid Hashemi would help, since people do come from other countries in the world to see him. The tests would be an enedoscopy, a barium swallow and a manometry test so that a full daignosis can be made. His PA's name is Jamie To.
R2351 dalia16306
Posted
you are welcome. OPA Alan described peristalsis is a motility problem.
and tests need to be taken to measure the preasure of the esophagus.
in my Sons case his LES ( lower esophageal sphincter) was almost completely closed. This was noticed with these two tests:
barium swallow test
manometry exam.
because this disorder is so rare a lot of doctors have trouble diagnosing it.
in fact tge GI doctor we went to was completely out of options as he had never seen these symptoms. He went as far as saying there was nothing he could do.
my wife is the one who told him to test for a motility problem and have tge Barium swallow test.
if you no medical insurance this will be expensive, but any doctor here in the United States that deals with achalasia will be able to help.
i also suggest you go on the internet and find out about agencies that help with providing health care to people with low resources.
If you don't have a problem with that any doctor can help you.
Its very important you go to a doctor who knows and specializes on achalasia.
Let me know if I can be of help.
R2351
Posted
i forgot this .....
Whe we asked the doctor how many of these procedures he had done he said around 15 to 18 a year. That didn't sound like a lot to us, but the rarity of this disorder makes sense in the number of procedures done per year by our doctor.
AlanJM R2351
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R2351
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when we were looking for achalasia information I came across many people who would stop writing after they had their surgeries or procedures done. That to me was incomplete because it failed to inform us of how the procedures they had done had worked.
Hope this helps someone. On September 30th my son completes two months after surgery. So far he's doing very well. There are a few foods that cause him problems like hard french fries and meats that aren't moist. Like dry steak, or hard pastas.
breads in the form of hamburgers are not a problem. Steak that's medium done goes down well. He's back to school and all is well.
liquids are not an issue. Pizza if the crust is soft is ok. Hard crust pizza is an issue.
his weight has stabilized at 210 lbs. the one thing is that he eats a bit slower and gets full quicker. I would say my son has a new lease on life due to this surgery.
I will keep you informed of his condition periodically.
If anyone has any questions please let me know. I'll do my best to answer them.
thanks to all that have shared their experiences on here .
see you all later.
AlanJM R2351
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Jttysmom R2351
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thank you so much for sharing your sons story! Truly helpful for me. I posted an original post about my 14yo son recently diagnosed with Achalasia type 3. Some of the symptoms your son had experienced I can relate very well. My boy has this very funny sound he makes while eating, almost an uncontrolled gurgling sound that slowly makes it's way up and out the throat. He never burps! I'm not sure he can even force a burp! I also relate to the constant questions that the whole family is getting tired of "are you okay?" "Is it hurting now?" "Did you just throw up?" "Is your pee dark?" Poor kid is sick of it for sure! I worry constantly. His specific diagnosis reads like this: EGJ obstruction with hypertensive LES at rest and complete relaxations with swallow. Body of esophagus abnormal with elevated DCI and spasms seen with almost all swallows. Pattern consistent with Spastic Achalasia type 3. We are waiting on our follow up appointment to go over these results. I will continue to read up on your posts and others but wanted you to know that your time in posting is much appreciated by this mother who has just entered into a whole new world.
Blessings to you and great news that things are calming down after surgery for your son!!
R2351 Jttysmom
Posted
You're very welcome. I'm sure you're aware of my sons ordeals since you probably read my posts. The one thing we found out about this disorder is that attack people differently.
My son really went downhill in a span of 3 months to the point that we were very concerned about him. Luckly we founfd the right doctors that knew what they were doing and helped my son.
A few days removed from three months since surgery for my Son and he's still doing great. French Fries from specific restaurants are a bit tough to swallow ( must be the preparation involved ) that cause that on him. He still eats fries, but they're usually from the same restaurants. He's doing very well.
He does eat a bit slower and tends to get full quicker, but that was to be expected since his stomach was stitched to his esophogus.
I can tell you this without doubt. You're son will get better if he decides to go with this procedure. I don't know how your son feels about going under the knife, but in my son's case he never had doubt. Never waivered from the get-go. He knew he needed help because he was in dire need of help.
Let me say this . This disorder will not get better on its own. It will only get worse unfortunatelly. So my suggestion would be to not let this get any worse and stop it asap.
Ask his doctor how much experience he has with this surgery. Don't be embarrased to ask any type of question to his doctor. You and your son must be as comfortable as possible with his doctor.
This procedure works. That I can guarantee you.
If you have any questions you might have please don't hesitate to ask.
You and I know the helpless feeling we have as parants to see your child struggle with something like this. Just keep in mind there's help out there. Don't loose faith.
God Bless
R2351
Posted
One day removed from four months of my son having his procedure done.
He's doing very well. In the last couple of weeks we've noticed a few things.
1. I mentioned befoe he makes this sound when he eats. Only after he swallows,
he calls it hicups. well that was a pretty constent thing, but in the last week or so it's diminished as well.
Also he's having less bad days as he calls them. That's when in any particular day there would be certain day that he would take food a bit slower because he felt like it was going down a bit slower.
It could be any food, even a food he never had a problem with all of a sudden i'd go down slower. In the last weeks this also has gone down.
All in all he's doing very well. He's basically resumed the diet he had before all this started. He drinks sodas, eats all kinds of foods and it's pretty much a normal diet.
His weight remains steady. He has not gained any weight since the procedure. He maintains pretty much the same weight no matter what he eats.
He also has had the flu and eating was not a problem. Coughing has had no effect on him in terms of food not going down.
This is were we're at. If anyone has any questions please feel free to ask.
We're here to help each other and most of all support each other.
God Bless,
AlanJM R2351
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I am glad your son is doing so well and send best wishes for the future. It sounds like he has found a new normal weight.
sazo R2351
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R2351
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happy late new year to all. I'd like to apologize for not coming here earlier, just had things to do and didn't have much time to visit here.
Its ts a few days from seven months of my sons procedure and all is going as good as we could hope for. Going into this after the procedure we were told that there would be certain days that he'd have problems with certain foods and just try to eat slower, chew food better etc.
since the procedure he's had a few days were food goes down very slowly, but these days have been very few.
even in the bad days he waits a few hours try's to eat and normaly it works out well.
all in all things are going very well, so we'll that at times we forget he has this illness.
My my son is eating just about everything with minimal episodes. His weight is maintaining tat the weight he had when he underwent his procedure.
which is a bit strange since he eats a lot and all sorts of food. He's at 210 lbs give or take a few pounds.
if any of you have a question for me or wants to share your story please feel free to write me or message me. I'll try my best to answer any question you might have.
thank yo to all that participate on this forum . We found it very helpful as it helps people in many different ways.
hope you're doing fine and God Bless.
Merryl R2351
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Hope your son continues to feel well.
Guest Merryl
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Merryl Guest
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Thank you.
R2351 Merryl
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Sad to hear you're having difficulties, but Hang in there. There has to be someone who can offer help. Stay positive and look forward to the day when you get the news that you're illness is diagnosed.
Hope to hear things are better for you next time we talk.
Hang in there and never lose faith.
Merryl R2351
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I have an appointment at my local hospital 4 weeks time to see a gastro Dr. I will probably need more tests before they find out if the swallowing problem is caused by the dismotility. I had a barium swallow 7 months ago and was told it was not too bad and I had an endoscopy over 18 months ago. The endoscopy showed H pylori and inflammation and small hiatus hernia. The h pylori has cleared up after antibiotics.
Joynan Merryl
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Hi Meryl
Curious how you are doing? I was just diagnosed with mild motility by barium swallow test- I have almost constant pressure in esophagus now since Barium swallow along with constant mucous coming up without heartburn- GI says not to do anything as probably won't progress- xanax relieves discomfort but read it can loosen LES, i stopped ppi and zantac as they didn't help mucous, any advice?
R2351 Joynan
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hello Joynan,
?The next step is an esophageal manometry test. This test will tell your Dr if there's indeed a problem with passing of food through the esophagus. It's not pleasant, but you'll get all your answers with that test.
Good luck and God Bless !!