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
d69818 R2351
Posted
Thank you for sharing your son's story with this condition, it's very helpful to read. And I hope your son is fully recovered by now as the posts on this site is more than a year ago. I'm just wondering if this forum is still active?
R2351 d69818
Posted
Thank you for your good wishes. Unfortunately one never fully recovers from this disease, but my Son is doing pretty good. There are bad days, but we were told this was going to be the case going forward.
This forum is active and kicking. I keep getting posts on my email regarding this thread.
Good day to you,
rick38938 R2351
Posted
I was thrilled to find your posts concerning your son's Achalasia and subsequant surgury. I am 60 yrs old & I have been fighting nearly exact identicle symptoms you describe about your son. At it's worst my stomach opening will close completely off, not even allowing food or even small gulps of water into the stomach for 2 or 3 days at a time. I have gone to a gastrointoligist and in the last 12-months have had restretched my spinkter opening 4-seperate times, and I was prescribed and now take Sucralfate 1 gm tablet, 4 times a day 1 hr before meals. I also take one Esomeprazole 40mg in the morning 30 minutes before breakfast daily. My doctor said that my stomach opening was literally the size of a pinhole before the first restretching procedure.
Even though the 4-endoscomy/restretches & medication have helped, I still have a day or two of misery almost every week where food and water lodge in my esophagus/stomach opening and I have to force myself to vomit & go without eating or drinking for hours & even days sometimes. I would love to have the same operation your son has had, but I am on fixed-income Social Security and only have medicare for health insurance. I have a very small savings and the question I have for you, sir...is this surgury like your son had available to somebody like myself with very little money?
Just the 20% I paid out of pocket this last 12-months for the 4-endoscomy/restretches have been difficult for me to cover.
I would appreciate any information or help you could give. It is very depressing not knowing if you can eat or even drink water during your next meal.
I want to thank you for your postings, I have learned more from your posts than from all the doctors that I have seen. And also the first time I have heard from another person with nearly exact eating/swallowing disorder I have, with information and surgury option. My current gastro doctor just keeps restretching my opening every 3-months, with no other real options, and very limited sucess.
R2351 rick38938
Posted
Hey Rick,
First of all my apologies for not answering you quickly. Somehow your post didn't filter through my email and missed it, but here I am now.
I'm so sorry to hear you're suffering from this horrible disease, but I'll start with My Son's doctor's quote.
"This disease will bother you to no end, but it will not kill you" those were his words before my Son's treatment.
?To answer you main concern, I don't really know if medicare-medical will cover this cost, but if you see a doctor who can perform the procedure they'll inform you if the cost would be picked up by medicare.
?Unfortunately I don't know how that works, but ask around...social workers would be my first guess, or you can try to find the answer yourself by talking to the right doctors, or medicare themselves.
Many in here have documented that they get different results after they've had the procedure, I can only tell you that this procedure worked for my Son to the extent that he can eat now.
Some great days, some ok days, some horrible days. Since his operation he's gained around 10lbs back
?he averages 215-217 lbs range. When his testing was done to see the pressure on his esophagus it was determined he had complete closure of the bottom sphincter leading to his stomach, and his doctor suggested that it might indeed be the size of a pin. So there too we have similar dealings.
?Snacks are NEVER a problem, those go down normal. potato chips, sun flower seeds, pop corn, those type things are never an issue. Solid food is another story. Like I said, it varies from week to week, but for the most part is going as well as we could've hoped for.
Hang in their Rick, there's help out there, that's for sure. Ask about your insurance case to the specialists you visit and never leave until your satisfied with their answers.
If you have any other question I'll do my best to get back to you.
?Again my apologies for taking this long to get back to you, but here we are...ready for another day.
Best of luck to you and hope all is better.
DJ-RN R2351
Posted
Has anyone had problems with Botox not lasting but a few days? I had it two weeks ago and the first week was amazing. No aspiration at all. After the first week I began to aspirate in my sleep yet again. I knew it was only going to last a few months but I wasn't expecting this. Very discouraging.
jackie72176 R2351
Posted
I'm so glad you shared your son's experience in such detail. I too have achalasia and have had it for almost 8 years now; I'm 52 and I can't imagine a kid going through this at any age. I have gone through the botox shots and now I'm having the same surgery (Aug. 16) your son had--a Heller Myotomy with the fundopilcation (I'm sure I spelled wrong). I went online only to find others who have gone through the surgery to see if it actually worked and how they felt; although I know too that everyone is different and reacts differently. Although I started my achalasia by not being able to eat solid foods without tons of water to push the bites down, it's to the point in the past 3 or so months that I'm starting to not be able to even swallow water the right way--especially if it's cold water. Nighttime is terrible because i just don't get good sleep because of the vomitting of anything I had that evening. I make it a point to not eat past a certain time in hopes that all my food will have gone down by the time I go to bed. I sleep practically sitting up and have reduced myself to soft foods and very chopped up food. I can't enjoy things like popcorn or soda; can't eat hardly anything that is spicy and has any rough texture to it. I thank you again and I will come back on here to let others know how my surgery went. I am nervous but I will be glad to get it over with and perhaps get back to normal eating again!
d69818 jackie72176
Posted
Good luck with your HM on Wed. I've been reading a lot of success stories with this procedure, and a lot of them saying after the first 10 days post-op, one will feel really good about their decision. Wishing you All the best of luck and strength and positivity that carry you through all the way🌻🍀💪
R2351 jackie72176
Posted
if you have any questions post opp please let me know.
ill do my best to answer all your questions.
best of luck.
Strobelight R2351
Posted
allyson
d69818 Strobelight
Posted
Hi Allyson, have you been experiencing this yourself? I've heard about 3 times dilation in each treatment (30, 35, 40mm) but not once a week/ 5-6 weeks/treatment. Just curious. Like everyone is saying, Achalasia is very different person to person and some surgeries can offer 10+ years or longer relief. Hope this young man's and of all the people who gone through HM/POEM blong to that category.🌻🍀
Strobelight d69818
Posted
AlanJM Strobelight
Posted
donna15310 AlanJM
Posted
R2351 Strobelight
Posted
Hello strobe light,
hes Es not having troubles the doctor didn't tell us about. The doctor was very candid with us.
he said this procedure is by no means a cure, but a way to help the patient to a better form of life.
the scar tissue he referred to was do to my son having this problem for a long time, but manifesting when he was 18 years old.
hes doing a lot better co,pared to how he was, but everyday is a new day..
some great days, some so so days, some bad days...but even in the bad days..he waits it out...sometimes eight hours and is able to eat. Not as good as the good days, but it goes down.
its his way of live and he's getting a hold of it.
thank you for your recommendations.
DJ-RN R2351
Posted
It's surprising to hear that the Doc didn't pickup on his Alchalasia when he scoped him. It looks like he would have seen the hypertensive LES and also the resistance he must have felt when passing the tube through it. But then again, I had five esophageal dilatations before I was ever diagnosed. Five when I never needed one according to my new GI docs and surgeons that I've seen. All they did over a 15 year period was stretch my esophagus so much to where it acts as a second stomach or large reservoir for food to collect. Sometimes it takes up to 48 hours before a meal actually makes it to my stomach. I have stage 3 spastic Alchalasia which is the most difficult to treat. Ive never had problems eating. In fact I've gained weight if anything. My biggest problem was aspirating in my sleep almost every night for over a decade. To where my airway would become totally occluded. Hence, having to quickly sit up and try to expel all food and fluid from my lungs with just the air that was there. At times I've had to do a Heimlich on myself by thrusting forward and falling on my chest/abdomen. The most horrific thing that I've ever endured.
They wanted to do a Myotomy and a Dor Fundoplication on me, but I wouldn't do it. I noticed that I didn't aspirate when I would fall asleep while sitting up reading or watching TV. So, I went out and bought a new Tempur pedic mattress with an adjustable head. That was three months ago and I haven't aspirated once in my sleep. My Dr's have told me since I've been dealing with Alchalasia for over 15 years, and now that sleeping with my head of bed elevated 45 degrees, they see no point/reason to do this surgery on me now.
If any of you have nocturnal aspiration, please invest in an adjustable bed frame and sleep with your head elevated. It has saved me from having to have this invasive surgery and dealing with all the post op complications many develop afterwards. I couldn't be more happy.
I wish each of you well and the best of care. Always get two to three opinions before undergoing any surgery. The type to treat Alchalasia differs greatly and can play a major role in the way you have to live life afterwards. What may be good for some doesn't necessarily mean that it is a good choice for you. I would ensure that your surgeon is experienced and has done at least more than 75 to 100 of whatever procedure you're considering. There are many Docs out there who do not have your best interest at heart. Many are practicing or pushing one particular way of doing surgery because it's the one that they excel in. And again, this doesn't mean that it's the best one for you.
Good luck to all of you!
DJ~RN
R2351 DJ-RN
Posted
Sounds like your issues were very different than my son's. My Son couldn't eat anything. Water was an issue in the very last weeks before surgery.
As for the GI doctor that we visited and treated my Son to see what was wrong. He was a disaster.
?We did our reaserch and found out about this dreaded disease through the internet. When we told the GI that scoped my Son he had never heard of this disease, so that gave us a red flag.
We found out another doctor that had achalasia cases and we started the ball rolling immediately.
?I agree with you that all cases are not the same, and this procedure works differently for many patients, but when you have nowhere to go one must try to everything humanly possible to help themselves.
?Thank you for sharing your story. It helps a lot to have people like yourself talking about your experience and knowledge about this disease. I keep documenting this because in my reaserch I'd find people that had the procedure, but would ner come back and explain how it was working, were there implications, etc.
?My goal is to help as many people as possible and to answer any question they may have involving this disease. Thank you for sharing your story with us, and hope that all is as good as possible with your life right now in regards to achalasia.
Best of luck,
DJ-RN R2351
Posted
Thank you for the kind note. I truly hope that everything works out well. It sounds like you're doing all that you can to educate both yourself and others. Everyone appreciates that I'm certain. Take care and keep us posted.