I was at end stage achalasia and ultimately had my esophagus removed. I eat perfect but deal with chronic nerve pain as a result of my surgery. This has been the worst 7 years of my life. Achalasia wins I guess. Although I lost I pray for everyone who has this condition and pray that no one has the experience that I have had.
Sympathy to you I'm having to take out my own stomach I've prepared but not sure I'll be able to do it properly I think I'll cope but scared of passing out
I'm 53 years old and have had this condition since I was a little kid about 5 or 6. For me, the spasms have always been triggered by rice more than anything. So I would always be extra cautious when eating rice. I thought it was just some sort of reaction I had to rice. About 10 years ago the spasms started happening a lot more often and with all kinds of foods. So I went to a specialist and found out I had this. They did a procedure where they ran a tube with a balloon on the end of it down my esophagus and inflated it inside the sphincter to stretch it. I will need the procedure again soon, but for almost 10 years, I didn't have any problems with this. Being able to eat rice like everyone else felt like a gift.
yeah, it never goes away which is scary...I was diagnosed at cleveland clinic with achalasia, I have a consultation next month it sucks though they are making me wait FOREVER while i'm suffering! I set up an appointment on the 23rd of this month and won't go in until the 18th of next month almost a 30 day wait!
@@TheBridgesYouBurn It sucks, I have had severe attacks at restaurants several times. That always made me feel like they thought I was trying to get out of paying for my food. I had to explain my condition to them so no one would think there was something wrong with the food.
@@dud3man6969 Yeah, eating out anywhere with achalasia is pretty much impossible...unless you limit your food to a very small portion and you don't drink more than a few sips. I can't wait to be able to eat food and drink water again normally.
My brother is currently suffering from this. 🥺 He’s lost 80lbs in 2 months and no Dr wants to help. He has no insurance. Seeing him dwindle down from a 240lb muscular guy to skin and bones and almost all muscle mass gone is heart breaking. We’re having to find ways to help him and calling drs in our area to see if they’ll help. He’s now able to get very little drink (hospitalized for 2 weeks and they were able to stretch his esophagus enough to get some nutrition in his stomach)… but he’s still weak and had to go to work because he has a family to support. This is a heart wrenching disorder!
It’s awful. I’ve had it for over 25 years. I was 25 lbs under normal weight for years and constantly had people making comments about how skinny I was. Most people don’t understand how it feels to not be able to eat. It takes a lot of mental control to not think about food. It can be possible to gain weight if he eats a high protein diet and is very careful what he eats. I was able to gain 20 lbs of muscle by working out 5 days a week and using protein shakes and creatine as well as being very careful not to eat food that can get stuck.
How is your brother now? He losing so much weight might be due to his inability to get nutrition from the food that he eats because he isn't getting it down, and also the increasing inflammation in the esophagus. This condition is, in most cases, an auto-immune disorder. Did he have a thyroid problem or long-standing stress to begin with prior to the manifestation of this condition? Did he have a long-standing mouth infections, tonsillitis, GERD, stomach ulcer? These are suggestions to manage this condition: (1) getting the patient relaxed before taking a meal so that the esophagus gets relaxed to open the sphincter; (2) take smaller meals every 3 or 4 hours, if condition is severe blenderize the food (textured liquids tend to go down easier than water) or take protein shakes; (3) regenerate the damaged tissue in the esophagus due to inflammation (according to science, this cannot be regenerated). Our digestive system is governed by the vagus nerve that communicates with our brain. If we stimulate the vagus nerve, we relax our parasympathetic nervous system, so our esophagus would get relaxed, too. When we are under stress, we switch our sympathetic nervous system on. This is not helping our body get ready to digest food or, in the case of others-- receive food (dysphagia) or get the food down (achalasia). But there's a quicker way to get to parasympathetic nervous system state. Try at least 5 sets of breathing exercises before taking the meal. Slowly inhale through the nose (5 seconds), hold the breath (4seconds), and slowly exhale through the mouth (8 seconds). Also, when there's inflammation in the esophagus, that causes the food to get stuck. So resolving the inflammation and getting the nervous system relaxed is key to getting the food down and benefitting from the food we eat so we can heal or repair our body. To resolve this inflammation, I recommend the patient to drink hydrogen water. Purchase hydrogen tablets from natural food store. Take it first thing in the morning on an empty stomach. Do it everyday for the meantime, and then every other day when the condition has improved significantly. The patient can take this until he sees fit. If all these still doesn't quite help, consider regenerative medicine for the brain. This might cover the need for regenerating tissue in the brain, or addressing vagus nerve damage or thyroid condition. He can do some other things if this isn't enough. I hope I didn't miss out anything. Pray before taking the meal.😀🙏🙏🙏
I was diagnosed at cleveland clinic went from around 180 lbs to 120lbs it's beyond horrifying I swear to God I wouldn't even wish something like this on a pedophile...
@@dogger37JC 25 years? wow, I've had it a few years now it's beyond hell...i vomit at least 2-3 times during every single meal. even water i puke up like crazy
My spasms in my esophagus have always come and gone during my 60 years. This past week has been especially difficult for me, with the food just sitting in my esophagus and not moving unless I take several sips of water to help it move. I was fine last week. My parents said it happened to me when I was a baby and I would just regurgitate everything they fed me and I couldn't gain weight because of it. As a child, I got severe painful esophageal spasms that lasted for up to two days where I would lie in bed in agony and could barely swallow anything.
Hello Achalasia Sufferers, I just wanted to provide a real and honest healing experience. I suffered from Type 2 Achalasia since January 2022. I was at the time 223lbs, and now I am 159 lbs. I just wanted to say not to get all into the Internet stuff about how there is no cure for Achalasia. Yes, it is certainly a rare condition, but you need to see a good GI who knows about the condition and can treat it. I ended up in the emergency room twice this year (2023) and got three tests (barium swallow, CAT Scan, manometry) and a day later the doctor told me I had Type 2 Achalasia. On May 9, 2023 I had to get the POEM Procedure. Now, I am home recovering-eating food and drinking liquids again. Never lose heart and remember to pray! Feel free to contact me or reply with any questions.
Hello, hope you feel better after your procedure . Did you get POEM done ? I have been diagnosed with Achalasia type 2 last week. Can you please tell me where you get your procedure done . how long it took to get surgery appointment and how long was the procedure . Oh and how much does it cost to get this done . I am in Illinois
@@samisam457 Hello Sam. Its now been one week and I am not exactly feeling better. I haven't been able to "tolerate" foods or liquids since last week so I need to head back to the hospital today. Yes, I got the POEM procedure done on May 9, 2023 and it only took about 60 minutes. I got the procedure done in a very nice hospital. To get the surgery appointment after the initial diagnosis took about two months. I believe that the surgery is covered by insurance.
@@williamhaynes8341 hope you get well soon . I was told that there are not many doctors available to perform achalasia procedure . Also I was told to try ballon dilation first. I'm still exploring my options and searching for doctors who can guide me to next step.
@@samisam457 Thanks. You are correct. I spent countless nights googling doctors how perform POEM procedure. Luckily, there were two very good practices in might health insurance network. One was located about 21 miles away and the other is about 80 miles away, so I chose the closer doctor. I had esophageual stretching done in the hospital back in March but it didn't last. The best thing I can recommend it to have the initial tests done, then let your GI make the next move........
I have this problem my appointment isnt until september. Ive been dealing with it for 8 years. Almost died many times. The problem is finding the doctor where you live who actually figures out your problem and does something because most just want to shove pills down your throat. Now that I have an appointment at weston i have higher hopes
So they tell me i have EOE. which i probably would have been better off with something else like achalasia. Because the cure for EOE is no gluten, no eggs, no nuts, no seafood, no soy, no milk products, no tofu, no licor, no chocolate, and im sure im missing a few others but yea you get the point! 😒
@@sportzzstoryzz1281 I did not have mich pain afterword but my throat was bad, I already had spasms back of my throat/swelling/redness and entubation made it worse. I am on 6 day ost up and I cannot say it works yet because I am still on almost lcear liquid diet. I feel reflux a few times a day, 5th day I had bad reflux or water does not.go down but stay close to your breathing pipe. I was told that it will be inflamation from the operation. I am taking Protonix twice a day. I hope things will.get better.
@@sportzzstoryzz1281 I had the POEM procedure in late October 2023 and it SAVED MY life!!! I ENJOYED Thanksgiving and > can finally eat!!! I just take my time and take my vitamins daily!
@@nursefayeeren5533 I was diagnosed with it too at Cleveland Clinic : ( have a consultation next month...it's so bad I wouldn't wish it on a pedophile...how are you doing now?
I'm 30 I had achalasia for 10 yrs before procedure. And mine esophagus is widen very much. But my poem 7 months ago worked I was 110 lbs before I'm 170 now. And recommend it or the heller one.
Same here. I have had A for 13 years one dilatation done 12 years ago. But resently this year I had a very wide esophagus bigger than my stomach actually. But no food would even go to my stomach not even water. The food had no where to so it moved into my lungs! I had the poem surgery 6 days ago. I'm still on a liquid diet hoping to move on to mashed food soon. What kind of a diet did they give you after poem? And how long did it take you to move on to normal eating?
@@indigoblue4708 how are you doing now? I was diagnosed with it at cleveland clinic and will have to get either POEM or the heller surgery soon I'm hoping to get the poem procedure cuz I don't want to get cut open with a knife...
@@TheBridgesYouBurn hi I'm perfectly wonderful after my poem. I feel soo good and I hope everyone here feels the same. The doctor said my A was really severe and that the stage was really bad. And I hope you get the POEM done it was no pain at all for me. Hope to here your good news soon.
@@indigoblue4708 hi, I came across your message which reassures me a lot I was diagnosed with achalasia at the end of December and underwent an operation in January, the evolution is always gradual, I would like to know given your experience and as you say passed several months ago, how are you feeling now? have you resumed eating all foods properly? have you resumed the routine properly? I would like to get in touch with you too. if possible thank you very much
I have this also 😢 sick every day without fail, dr's in UK dont have much of a clue about this im undecided weather this is a good idear or not ? Anyone suffering i take matazapine to stop the sickness but isnt always a guarantee
I have suffered with Achalasia for 2 years I'm down about 100 pounds mine is type 3 and my surgery is for next month I hope I can eat and drink I just want to experience a peaceful meal again.... Quick question when drinking soda does anyone feel worse or is it just me
@@dud3man6969Haven't exactly been diagnosed yet. My GI thinks it is EOE but I know that it's not because I eat a incredibly healthy diet and it's not necessarily any particular food that triggers it. I do tend to have issues with rice and think that have a higher consistency.
I was 6 years old when I was diagnosed. I was close to esophageal cancer. I’m 25 now with severe chest pains since then. I have type 3 achalasia. And it’s been extremely difficult. It is indeed long term for me. I was extremely skinny when I was younger.. 16 years old and I was 99 lbs. wearing size 00 slim 🥲
I'm sorry. Ive been struggling with it too for a good while...honest to God it's so bad I wouldn't wish it on a pedophile and that is saying a LOT! I have my 3rd appointment at CC in about a month.
I was at end stage achalasia and ultimately had my esophagus removed. I eat perfect but deal with chronic nerve pain as a result of my surgery. This has been the worst 7 years of my life. Achalasia wins I guess. Although I lost I pray for everyone who has this condition and pray that no one has the experience that I have had.
I have this and am 26. I am thinking of doing the POEM procedure. Where does food go if you have no esophagus?
@@citizenoftheyearCCFood goes into your stomach like normal.
My husband has this and they want to remove his esophagus this week. I’m really nervous for him.
I can only imagine what you’re going through, has the nerve pain subsided?
Sympathy to you I'm having to take out my own stomach I've prepared but not sure I'll be able to do it properly I think I'll cope but scared of passing out
I'm 53 years old and have had this condition since I was a little kid about 5 or 6. For me, the spasms have always been triggered by rice more than anything. So I would always be extra cautious when eating rice. I thought it was just some sort of reaction I had to rice. About 10 years ago the spasms started happening a lot more often and with all kinds of foods. So I went to a specialist and found out I had this. They did a procedure where they ran a tube with a balloon on the end of it down my esophagus and inflated it inside the sphincter to stretch it. I will need the procedure again soon, but for almost 10 years, I didn't have any problems with this. Being able to eat rice like everyone else felt like a gift.
hello Dud, (I have achalsia) I wonder after your balloon stretch did you have any side effects ??
yeah, it never goes away which is scary...I was diagnosed at cleveland clinic with achalasia, I have a consultation next month it sucks though they are making me wait FOREVER while i'm suffering! I set up an appointment on the 23rd of this month and won't go in until the 18th of next month almost a 30 day wait!
@@TheBridgesYouBurn It sucks, I have had severe attacks at restaurants several times. That always made me feel like they thought I was trying to get out of paying for my food. I had to explain my condition to them so no one would think there was something wrong with the food.
@@dud3man6969 Yeah, eating out anywhere with achalasia is pretty much impossible...unless you limit your food to a very small portion and you don't drink more than a few sips. I can't wait to be able to eat food and drink water again normally.
Love the health cast. I learned something new ❤
My brother is currently suffering from this. 🥺 He’s lost 80lbs in 2 months and no Dr wants to help. He has no insurance. Seeing him dwindle down from a 240lb muscular guy to skin and bones and almost all muscle mass gone is heart breaking. We’re having to find ways to help him and calling drs in our area to see if they’ll help. He’s now able to get very little drink (hospitalized for 2 weeks and they were able to stretch his esophagus enough to get some nutrition in his stomach)… but he’s still weak and had to go to work because he has a family to support. This is a heart wrenching disorder!
It’s awful. I’ve had it for over 25 years. I was 25 lbs under normal weight for years and constantly had people making comments about how skinny I was. Most people don’t understand how it feels to not be able to eat. It takes a lot of mental control to not think about food. It can be possible to gain weight if he eats a high protein diet and is very careful what he eats. I was able to gain 20 lbs of muscle by working out 5 days a week and using protein shakes and creatine as well as being very careful not to eat food that can get stuck.
Also make sure he doesn’t get Botox. It can be used as a short term treatment but it causes scar tissue that will lead to more problems later.
How is your brother now? He losing so much weight might be due to his inability to get nutrition from the food that he eats because he isn't getting it down, and also the increasing inflammation in the esophagus. This condition is, in most cases, an auto-immune disorder. Did he have a thyroid problem or long-standing stress to begin with prior to the manifestation of this condition? Did he have a long-standing mouth infections, tonsillitis, GERD, stomach ulcer? These are suggestions to manage this condition: (1) getting the patient relaxed before taking a meal so that the esophagus gets relaxed to open the sphincter; (2) take smaller meals every 3 or 4 hours, if condition is severe blenderize the food (textured liquids tend to go down easier than water) or take protein shakes; (3) regenerate the damaged tissue in the esophagus due to inflammation (according to science, this cannot be regenerated).
Our digestive system is governed by the vagus nerve that communicates with our brain. If we stimulate the vagus nerve, we relax our parasympathetic nervous system, so our esophagus would get relaxed, too. When we are under stress, we switch our sympathetic nervous system on. This is not helping our body get ready to digest food or, in the case of others-- receive food (dysphagia) or get the food down (achalasia). But there's a quicker way to get to parasympathetic nervous system state. Try at least 5 sets of breathing exercises before taking the meal. Slowly inhale through the nose (5 seconds), hold the breath (4seconds), and slowly exhale through the mouth (8 seconds). Also, when there's inflammation in the esophagus, that causes the food to get stuck. So resolving the inflammation and getting the nervous system relaxed is key to getting the food down and benefitting from the food we eat so we can heal or repair our body. To resolve this inflammation, I recommend the patient to drink hydrogen water. Purchase hydrogen tablets from natural food store. Take it first thing in the morning on an empty stomach. Do it everyday for the meantime, and then every other day when the condition has improved significantly. The patient can take this until he sees fit. If all these still doesn't quite help, consider regenerative medicine for the brain. This might cover the need for regenerating tissue in the brain, or addressing vagus nerve damage or thyroid condition. He can do some other things if this isn't enough. I hope I didn't miss out anything. Pray before taking the meal.😀🙏🙏🙏
I was diagnosed at cleveland clinic went from around 180 lbs to 120lbs it's beyond horrifying I swear to God I wouldn't even wish something like this on a pedophile...
@@dogger37JC 25 years? wow, I've had it a few years now it's beyond hell...i vomit at least 2-3 times during every single meal. even water i puke up like crazy
My spasms in my esophagus have always come and gone during my 60 years. This past week has been especially difficult for me, with the food just sitting in my esophagus and not moving unless I take several sips of water to help it move. I was fine last week. My parents said it happened to me when I was a baby and I would just regurgitate everything they fed me and I couldn't gain weight because of it. As a child, I got severe painful esophageal spasms that lasted for up to two days where I would lie in bed in agony and could barely swallow anything.
Hello Achalasia Sufferers,
I just wanted to provide a real and honest healing experience. I suffered from Type 2 Achalasia since January 2022. I was at the time 223lbs, and now I am 159 lbs. I just wanted to say not to get all into the Internet stuff about how there is no cure for Achalasia. Yes, it is certainly a rare condition, but you need to see a good GI who knows about the condition and can treat it. I ended up in the emergency room twice this year (2023) and got three tests (barium swallow, CAT Scan, manometry) and a day later the doctor told me I had Type 2 Achalasia. On May 9, 2023 I had to get the POEM Procedure. Now, I am home recovering-eating food and drinking liquids again. Never lose heart and remember to pray! Feel free to contact me or reply with any questions.
Hello, hope you feel better after your procedure . Did you get POEM done ? I have been diagnosed with Achalasia type 2 last week. Can you please tell me where you get your procedure done . how long it took to get surgery appointment and how long was the procedure . Oh and how much does it cost to get this done . I am in Illinois
@@samisam457 Hello Sam. Its now been one week and I am not exactly feeling better. I haven't been able to "tolerate" foods or liquids since last week so I need to head back to the hospital today. Yes, I got the POEM procedure done on May 9, 2023 and it only took about 60 minutes. I got the procedure done in a very nice hospital. To get the surgery appointment after the initial diagnosis took about two months. I believe that the surgery is covered by insurance.
@@williamhaynes8341 hope you get well soon . I was told that there are not many doctors available to perform achalasia procedure . Also I was told to try ballon dilation first. I'm still exploring my options and searching for doctors who can guide me to next step.
@@samisam457 Thanks. You are correct. I spent countless nights googling doctors how perform POEM procedure. Luckily, there were two very good practices in might health insurance network. One was located about 21 miles away and the other is about 80 miles away, so I chose the closer doctor. I had esophageual stretching done in the hospital back in March but it didn't last. The best thing I can recommend it to have the initial tests done, then let your GI make the next move........
@@williamhaynes8341 how was your visit to doctor today, do you feel better ?
May i know deep water swiming and diving is possible to after achalasia surgery. Thank you!
Haw cost this?
Thats good to know. Me i have a condition also 😥
If you remove the muscle, dont you have reflux after that lying down?
I throw up almost every night. I purchased a bed that inclines but no help. Even if I don’t eat I still throw up bile.
I have this problem my appointment isnt until september. Ive been dealing with it for 8 years. Almost died many times. The problem is finding the doctor where you live who actually figures out your problem and does something because most just want to shove pills down your throat. Now that I have an appointment at weston i have higher hopes
So they tell me i have EOE. which i probably would have been better off with something else like achalasia. Because the cure for EOE is no gluten, no eggs, no nuts, no seafood, no soy, no milk products, no tofu, no licor, no chocolate, and im sure im missing a few others but yea you get the point! 😒
I pray you had your surgery safely! I had my surgery in late October 2023 and I feel like I have a new lease on life!
Hows everything going? I was diagnosed at cleveland clinic im hoping to get the poem procedure rather than have them cut me open! : (
@@154angel154 was it a poem procedure or did they cut you open? I hope i just get the poem procedure don't want to have to have a serious surgery
I suffered from this disease for uears I am 47 and finally they diagnosed me. I will jave POEM surgery next Tuesday, I hope everythink will go ok.
How did it go?
@@sportzzstoryzz1281 I did not have mich pain afterword but my throat was bad, I already had spasms back of my throat/swelling/redness and entubation made it worse. I am on 6 day ost up and I cannot say it works yet because I am still on almost lcear liquid diet. I feel reflux a few times a day, 5th day I had bad reflux or water does not.go down but stay close to your breathing pipe. I was told that it will be inflamation from the operation. I am taking Protonix twice a day. I hope things will.get better.
@@nursefayeeren5533 oh wow. Okay I will pray for you to get better! Thank you everything will go away! And you’ll fell perfect again!
@@sportzzstoryzz1281 I had the POEM procedure in late October 2023 and it SAVED MY life!!! I ENJOYED Thanksgiving and > can finally eat!!! I just take my time and take my vitamins daily!
@@nursefayeeren5533 I was diagnosed with it too at Cleveland Clinic : ( have a consultation next month...it's so bad I wouldn't wish it on a pedophile...how are you doing now?
I have been suffering from achalasia for 2 years and my POEM surgery will be in a few months. Can anyone tell their experience?
I'm 30 I had achalasia for 10 yrs before procedure. And mine esophagus is widen very much. But my poem 7 months ago worked I was 110 lbs before I'm 170 now. And recommend it or the heller one.
Same here. I have had A for 13 years one dilatation done 12 years ago. But resently this year I had a very wide esophagus bigger than my stomach actually. But no food would even go to my stomach not even water. The food had no where to so it moved into my lungs! I had the poem surgery 6 days ago. I'm still on a liquid diet hoping to move on to mashed food soon. What kind of a diet did they give you after poem? And how long did it take you to move on to normal eating?
@@indigoblue4708 how are you doing now? I was diagnosed with it at cleveland clinic and will have to get either POEM or the heller surgery soon I'm hoping to get the poem procedure cuz I don't want to get cut open with a knife...
@@TheBridgesYouBurn hi I'm perfectly wonderful after my poem. I feel soo good and I hope everyone here feels the same. The doctor said my A was really severe and that the stage was really bad. And I hope you get the POEM done it was no pain at all for me. Hope to here your good news soon.
@@indigoblue4708 hi, I came across your message which reassures me a lot I was diagnosed with achalasia at the end of December and underwent an operation in January, the evolution is always gradual, I would like to know given your experience and as you say passed several months ago, how are you feeling now? have you resumed eating all foods properly? have you resumed the routine properly? I would like to get in touch with you too. if possible thank you very much
@@indigoblue4708HEY IAM 14 and I have had this achalasia for 2 years I'm gonna have poem surgery soon. Can u tell ur experience?
I have this also 😢 sick every day without fail, dr's in UK dont have much of a clue about this im undecided weather this is a good idear or not ? Anyone suffering i take matazapine to stop the sickness but isnt always a guarantee
Hello. I was just diagnosed with achalasia.
Do a ton of research and never loose faith. You will most likely go through a rollercoaster of emotions
I have suffered with Achalasia for 2 years I'm down about 100 pounds mine is type 3 and my surgery is for next month I hope I can eat and drink I just want to experience a peaceful meal again.... Quick question when drinking soda does anyone feel worse or is it just me
It felt worse when drinking soda for me too.
I have been terrified of rice most of my life. For years, it was the only thing that triggered mine.
Cr
@@dud3man6969Really? Mines too and nobody gets it
@@dud3man6969Haven't exactly been diagnosed yet. My GI thinks it is EOE but I know that it's not because I eat a incredibly healthy diet and it's not necessarily any particular food that triggers it. I do tend to have issues with rice and think that have a higher consistency.
GERD often occurs after POEM.
I was 6 years old when I was diagnosed. I was close to esophageal cancer. I’m 25 now with severe chest pains since then. I have type 3 achalasia. And it’s been extremely difficult. It is indeed long term for me. I was extremely skinny when I was younger.. 16 years old and I was 99 lbs. wearing size 00 slim 🥲
I'm sorry. Ive been struggling with it too for a good while...honest to God it's so bad I wouldn't wish it on a pedophile and that is saying a LOT! I have my 3rd appointment at CC in about a month.
Have you ever thought of getting the surgery?