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
naruto123 R2351
Posted
donna15310 R2351
Posted
Thank you for your very extensive posting, with so much information! I will be having a Heller Myotomy and Fund. on Nov. 3rd. This can't come fast enough, and I am very hopeful that there will be a better 'quality of life' in terms of eating. I do have my 'eyes open' and am aware, that people have different outcomes and issues after surgery. I appreciate this Forum, and the support along with very valid and helpful information.
d69818 donna15310
Posted
BTW, did you go through both endoscopy and manometry test before deciding on the surgery? If you did, were those done together or on separate time? Thanks in advance for your reply.
AlanJM R2351
Posted
The manometry test indicates exactly where the problems are situated and this might have been the reason for the extra incision.
We wish your son continued good progress.
R2351 AlanJM
Posted
God Bless,
bekah20291 R2351
Posted
Thank you all so much for sharing. I'm an absolutely terrified out of my mind 23 year old female, yet feeling inspired by all of you knowing how strong you and your family members are and seeing y'all fight!! I felt like I wanted to give up which is my normal way. But I feel like I want to try!!! I want to fight and I want to enjoy life again. It's been so rough having this issue and having doctors say, ohh it's acid reflux. It's just a sensation. It's pain called costochondritis, but I just had the second spell in 6 months of this absolutely wretched feeling, although worse this time. To where my food comes back up. I can feel it slowly coming up and I can't do anything to stop it. If/ Once I finally do get it to feel like it goes down, I get horrible chest pains that are so bad I could hardly stand it. It felt like trapped burps. So then I tried to burp & that made it worse bc im telling you, food rose up instead and I had to basically re swallow the food, but from a lower point if you know what Im trying to say. It's so bad to not be able to burp and instead food comes up!! I have figured it out I believe and I think it's achlasia. I don't know why they wouldn't be at least look into it. Instead when I said, I think it's a swallowing issue, they both said, you're too young for that. Y'all I sit here and cry bc I knew something was wrong. I just knew it. Please pray for me guys
DariusRandon bekah20291
Posted
So sorry you're suffering with this. I've 3 attacks very similar to what you describe, bekah20291. The first 1 happened in clasS last yr, & I drove myself to ER. They did x-ray swallow test & said I had mild acid refux! gave me presciption. since then 2 more times & 3rd time I inhaled some stomach contents. they were worried about #aspiration pneumonia so had to have endoscopy.but ok now. they still wont give me a diagnosis. now they say it's anxiety. so worried it's going to happen again. I hope you get it under control. just be persistent with doctors. good luck!
AlanJM bekah20291
Posted
Achalasia is fairly rare. It affects about 6000 people in Britain at all stages of the disease, and about 0.5 - 1 per 100,000 population are diagnosed each year. Although achalsia is most common in people between the ages of 30 and 60, it can affect people from childhood / any age. So with due respect to the doctor, it is not possible to say 'you are too young for it'.
?The possibility is that because your lower oesophageal sphincter (between oesophagus and stomach) is tight shut, the increasing opressure as you swallow more food exerts more pressure until the sphincter at the top of your oesophagus gets oressured into releasing food. So it is regurgitation rather than vomiting from the stomach?
?I think you should return to the doctor or get a second opinion. Ask for endoscopy, barium swallow and high resoluton manometry tests to diagnose exactly what is happening to your swallowing function. There is a booklet 'A Patient's Guide to Achalasia' that you can download from the website of the Oesophageal Patients Association under the oesophagus and Achalasia (towards bottom of page) and this may help the doctors as well.
?Costochondritis is a pain arond your ribs and breastbone, but your question to the doctors might be why it should not be he peristaltic muscles going into spasm.
chris69541 R2351
Posted
AlanJM chris69541
Posted
Take liquid / soft food and avoid food that has a stringy texture, skins or things like bread or rice that might congeal in your oesophagus.
You can try massaging your chest / diaphragm area, or jumping on to your heels to try and help things through.
d69818 AlanJM
Posted
Thanks for all your posts. I'd like to ask your opinion on having the manometry and endoscopy test done on one shot, back to back. Have you heard of it?
FiremanCon40 R2351
Posted
Thank you for sharing your story. I myself suffer from a lot of the same symptoms as your son, but none of doctors can understand the food getting stuck in esophagus and subsequent regurgitation. I have Graves and Hashi's thyroid autoimmune disorder, as well as Raynaud's phenomenon and some other symptoms that aren't quite synonymous to Sjogrens. One question, did your son experience an extremely full stomach after a meal that felt like it never moved down into the intestinal tract, and just festered in his stomach until it caused him to vomit mostly undisgested, almost rotten food hours later? Again, thank you for sharing.
rebecca111213 FiremanCon40
Posted
What are your symptoms ? Or what we're your symptoms? What is Raynauds?
Sjogrens
R2351 FiremanCon40
Posted
Hello there,
?My Son never got to feel a full stomach because it never got there. He felt tightness in his chest ( food stuck in the esophagus) he tried to vomit, but never came out. This went on for the last months before surgery.
That's when we knew we had to act and find out what was wrong with him.
My wife discovered achalasia and that's how we got the ball rolling.
We know all about it now. Unfortunately.
I hope you're doing better.
Best of luck
emma_marie88617 R2351
Posted
Hello. My name is Emma Marie and I was reading your letter through my phone. I am 43 yrs old and unfortunately was diagnosed with Achalasia on February of 2013. I'm gonna assume unlike your son I think I would be on stage 4 which is a very severe case. I pretty much have been through what your son was through all of 2012 til I was actually diagnosed with Achalasia. I was weighing 285 lbs but ended up weighing 153 lbs by August 2013 due to all the vomiting. My problem was I didn't have health insurance and couldn't afford getting one because I couldn't go to work from the coughing and choking which made everyone think I was gonna get them sick. I also couldn't sleep at nights from the regurgitation and coughing and choking. I lost so much sleep trying not to vomit while sleeping that my sleep pattern was messed up. I was afraid to aspirate one night and not wake up. What I did get to do was the Botox injections that relaxed my muscles and I was able to eat and drink for about 6 months. I am now still trying to have this surgery done although I know it is not going to cure me I'm sure it will help me get back on my feet again. I have been through so much that I almost gave up. I am anemic now, was dehydrated, lost not only weight but my muscle tone that I was very weak. My sciatica nerve started to attack me because of all the sudden weight I lost. I fainted at the plasma center, when I tried to donate plasma for some cash. My immune system also was so low, I got the flu or bronchitis easily. I have to sleep with my head up now and even if I have surgery still will have to. I believe you did say that if one had this disease that there was a cure but I have done my research and really there is no cure only management. As of matter of fact it could also turn into esophagus cancer even after surgery. I just want to treat and manage it though. I'm pretty tired and feel too young to be going through this. I would like to get some help from the government since I have worked up until I got sick. I would like to go back to work but I need surgery to be able to eat again. So I do believe this is a life or death situation.
Strobelight emma_marie88617
Posted
Hi Emma Marie,
I am so sorry you are having to go thru this, too. Most cities have an indigent program for folks just like yourself. Call your local hospitals and urgent cares, call the city help programs to find out who manages that program. Usually you have to get on a waiting list and fill out a zillion forms. It's a clinic that is set up where you can go in when you are sick as well as getting further help. You may have to make a lot of calls to find where you go as most folks are not aware of this type clinic. I had a friend who was a nurse for years that told me about it for my sister who did not make much money. They treated her great! Good luck! Allyson
R2351 emma_marie88617
Posted
Wow, my heart sank reading your post. I'm so sorry to hear you're going through this. I pray you found help by now. Don't ever give up......NEVER give up hope that you'll get the help you need.
?Call clinics, social workers leave no stone unturned until you get the help you need.
I wish nothing but the best of luck going forward.
God Bless,