Hi Teresa, I was diagnosed with achalasia about 4 years ago using manometry tests following rapid weight loss and frequent vomiting during and after meals. Given my age at the time (73), my surgeon advised against surgical procedures. Instead I have had botox injections into my LES sphincter muscle every 6 months to keep the muscle open enough for the food to go down into my stomach. I have not had any bad side effects like acid reflux after the procedures. Nonetheless, I have sporadically experienced the usual symptoms of achalasia, like chest pain and sphincter muscle pain. Fortunately, early on I discovered that drinking a few sips of cold water instantly stopped the pain. My gastro doc was not aware of this simple solution ... at least in my case.
I was diagnosed with achalasia type 111 on 8/27/21 Now waiting to see surgeon that specializes in this. It's not a Mayo clinic, but one of the best hospitals in Seattle; Swedish hospital. I'm 68, so I don't know what, if any surgery he'll be wanting to do on me. Just hope I'm able to get an appointment soon. From what I have read through the Mayo clinic about achalasia type 111, there are at least three procedures that possibly can be done. The POEM procedure sounds like to me to be the best one for my issue.
So it is the sphincter that causes the feeling of restriction accross the bottom of my rib cage; like a tightness going on. I'll need to try the cold water swallowing technique next time I feel it. Thank you for this information.
Hi Teresa, I was diagnosed with achalasia about 4 years ago using manometry tests following rapid weight loss and frequent vomiting during and after meals. Given my age at the time (73), my surgeon advised against surgical procedures. Instead I have had botox injections into my LES sphincter muscle every 6 months to keep the muscle open enough for the food to go down into my stomach. I have not had any bad side effects like acid reflux after the procedures. Nonetheless, I have sporadically experienced the usual symptoms of achalasia, like chest pain and sphincter muscle pain. Fortunately, early on I discovered that drinking a few sips of cold water instantly stopped the pain. My gastro doc was not aware of this simple solution ... at least in my case.
How do they go about the botox injection into the LES sphincter muscle every 6 months. Would that be done with an endoscopy procedure while under anesthesia? If so that sounds better to me than slitting almost entirely my esophagus and attaching the sphincter muscle to it. I think that is how it was described.
I am so confused. My POEM is scheduled later this week, and my pre op just says to limit my diet to liquid the day prior to procedure. However I am reading all over the place where they are to be on all liquid for 5 days. I have no clue where to go and find out as its the weekend.
Hi everyone! Thank you so much for this forum - I'm so happy to have come across this. You're all so wonderful for sharing and actively posting.
I'm 33 next month and I was diagnosed with Achalasia 8 years ago. So far, I've discussed options with my specialist, and he's recommended that if I am managing it well via diet and lifestyle changes, that he is okay to put off my surgery. In an ideal world, I would prefer to continue to manage it the way I do today (naturally with no meds) and the condition doesn't progress, but only time will tell if medical intervention is required. Then, yesterday, after my routine scope (I'm told to have one every 5 yrs.), my specialist asked me about whether or not I'm planning to get pregnant and to reconsider surgery. I have requested to chat further about this, but I'd like to go into my appointment a little prepared. I'm not sure where to begin or what to consider, and the lack of research on pregnant women managing their Achalasia is very disheartening.
Would anybody that has experienced achalasia and pregnancy be able to comment or redirect me to any resources?
Have any of you had colonoscopy with achalasia. Wondered how drinking the prep went down. Wondered if there were a special prep for
those with achalasia. Doesn't seem to be much info about this.
Hi there - how is your drinking in general? I find drinking warm / room temperature water much easier than cold beverages. I also find that I need to be super relaxed when consuming foods/beverages, so that my esophageal sphincter can also relax. I also spoke with a naturopath and he's reminded me that certain foods do tighten the esophageal sphincter, which should just always be avoided: greasy foods, fast food, spicy food, hard meats, chewy foods.
45 year old male. Had 2 heller myotomy surgery and I need another one. My lower LES is closing again. This sickness is breaking me down slowly. Life has change from happy to pain and struggling to eat anything. Been to ER 3 times to remove steak. Than rice now bread. I've tried everything. Had 3 dialations
Hi there, sorry to hear that. I hope you're alright now? Have you considered dietary changes? After speaking with my naturopath, he advised on foods that I should eat / not eat. I was told to avoid steak at all costs, given that if it get stuck in the esophageal sphincter, it's not easy to pass let alone dissolve. If you have not already done so, I would consider doing more research on what to eat v. not eat, and how best to consume foods. Here is what has worked for me over the past 8 years, note that I have not had the surgery done yet:
-Eat foods that are softer, and more moist
-Avoid foods that are dry: chicken breast, steaks, sticky/doughy breads. Toast your breads so they're less sticky
-Have hot water with meals, this helps to relax the sphincter and break down food
-Eat small portions and eat more frequently throughout the day
-Avoid greasy foods and fast foods; these will only irritate the esophagus causing more damage
-Make sure you're consuming enough calories, I like to have a protein shake everyday, with fruits. I thin it out with oats milk.
-Eat in a relaxed environment where you can take deep breaths to relax the esophagus and sphincter. Eating when I'm stressed is a no-go, I will just have to cough up the food, it won't pass.
-When eating in social environments, eat slower than usual, small bites, lots of hot water between bites to know the previous bite has actually made it down to the stomach
-Avoid cold beverages and ice at all costs. Cold water or cold foods seem to snap shut my esophagus on the spot.
-Start the day with small meals and lots of beverages to the sphincter that has been shut all night can slowly begin to open. Tea and oatmeal is ideal, but whatever you prefer that's aligned with the above. I find having a large lunch without consuming any breakfast or hot beverage in the morning is so difficult because the sphincter has not had time to open (relax) yet.
-Finally, if you're at all stressed, rushed or just anxious, wait to eat. I have had times where I've tried to eat while stressed and it's results in food being lodged in my esophagus to the point where I cannot even have water until the food has passed. This can last up to two full days, it's hell.
-Tip: if you have food lodged in your esophagus, try having hot water or carbonated beverages. This can help accelerate breaking down the food.
-Tip: whenever I can, I eat around social settings, so before I go for drinks/social events. I prefer to not take on the added stress of eating in social environments and risk having to throw up my food to clear out my esophagus. It's a stressful cycle that only amplifies the tightening of the sphincter.
I hope some of my natural practices / habits are helpful for you. It's all trial and error and maybe some of these will help alleviate your issues. All the best and I hope you can avoid another surgery, and if you do end up having it, I wish you a safe and speedy recovery!!!
I have achalasia and have been on a CPAP for two months and it has made a significant difference in the quality of my sleep. I love it. However, lately I'm beginning to fear that the air blowing into my mouth and lungs from the CPAP is making my Achalasia worse. Is anyone else with achalasia also on a CPAP and if so, what has been your experience with it in relation to your achalasia? Thank you.
I have also been using a CPAP for 2 months and have experienced pain that I believe is related to my achalasia.
I started having symptoms of achalasia when I was 7 or 8 years old and was on death's door when I was finally diagnosed at 14 (I had only gained 5 pounds over 6 years and weighed only 76 pounds when I had my open Heller Myotomy at 15). That was in 1985 and it honestly saved my life. Other than GERD I only notice issues related my achalasia a few times a year, but I can deal with that.
However, since starting CPAP I have experienced intense pain right around where my lower esophageal sphincter is. It has happened twice (once each month). After the first time, the doctor lowered my pressure from a max of 15 to 11. I'm waiting to hear back from him now regarding the second episode. The pain feels like an extreme muscle tear/stretch and it hurts to cough, laugh, or breathe very deeply. Last time it took a week to recover from it and I'm on day 3 this time. I can get through the day ok but the nights are horrible because any little movement causes pain. I can't use the CPAP when this happens.
I was wondering, has anyone else experienced this same thing? If so, what did you do for relief.
I have also been using a CPAP for 2 months and have experienced pain that I believe is related to my achalasia.
I started having symptoms of achalasia when I was 7 or 8 years old and was on death's door when I was finally diagnosed at 14 (I had only gained 5 pounds over 6 years and weighed only 76 pounds when I had my open Heller Myotomy at 15). That was in 1985 and it honestly saved my life. Other than GERD I only notice issues related my achalasia a few times a year, but I can deal with that.
However, since starting CPAP I have experienced intense pain right around where my lower esophageal sphincter is. It has happened twice (once each month). After the first time, the doctor lowered my pressure from a max of 15 to 11. I'm waiting to hear back from him now regarding the second episode. The pain feels like an extreme muscle tear/stretch and it hurts to cough, laugh, or breathe very deeply. Last time it took a week to recover from it and I'm on day 3 this time. I can get through the day ok but the nights are horrible because any little movement causes pain. I can't use the CPAP when this happens.
I was wondering, has anyone else experienced this same thing? If so, what did you do for relief.
Hello @andreafl and welcome to Mayo Connect. You are asking good questions about the pain that seems to be related to the use of the CPAP machine. We do have a Sleep support group on Mayo Connect. Here is a link to discussions that talk about CPAP machines. Perhaps as you look through these discussions, you will find some helpful information.
--CPAP discussions https://connect.mayoclinic.org/group/sleep-health/?search=Cpap#discussion-listview
I would also like to invite, John, @johnbishop, to this discussion as he is active in the Sleep support group and uses a CPAP. Perhaps he will recall any posts that speak about this problem.
Are you have any other problems related to CPAP usage? Did it help you to sleep better?
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I was diagnosed with achalasia type 111 on 8/27/21 Now waiting to see surgeon that specializes in this. It's not a Mayo clinic, but one of the best hospitals in Seattle; Swedish hospital. I'm 68, so I don't know what, if any surgery he'll be wanting to do on me. Just hope I'm able to get an appointment soon. From what I have read through the Mayo clinic about achalasia type 111, there are at least three procedures that possibly can be done. The POEM procedure sounds like to me to be the best one for my issue.
So it is the sphincter that causes the feeling of restriction accross the bottom of my rib cage; like a tightness going on. I'll need to try the cold water swallowing technique next time I feel it. Thank you for this information.
How do they go about the botox injection into the LES sphincter muscle every 6 months. Would that be done with an endoscopy procedure while under anesthesia? If so that sounds better to me than slitting almost entirely my esophagus and attaching the sphincter muscle to it. I think that is how it was described.
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1 ReactionI am so confused. My POEM is scheduled later this week, and my pre op just says to limit my diet to liquid the day prior to procedure. However I am reading all over the place where they are to be on all liquid for 5 days. I have no clue where to go and find out as its the weekend.
Achalasia + pregnancy... what to consider?
Hi everyone! Thank you so much for this forum - I'm so happy to have come across this. You're all so wonderful for sharing and actively posting.
I'm 33 next month and I was diagnosed with Achalasia 8 years ago. So far, I've discussed options with my specialist, and he's recommended that if I am managing it well via diet and lifestyle changes, that he is okay to put off my surgery. In an ideal world, I would prefer to continue to manage it the way I do today (naturally with no meds) and the condition doesn't progress, but only time will tell if medical intervention is required. Then, yesterday, after my routine scope (I'm told to have one every 5 yrs.), my specialist asked me about whether or not I'm planning to get pregnant and to reconsider surgery. I have requested to chat further about this, but I'd like to go into my appointment a little prepared. I'm not sure where to begin or what to consider, and the lack of research on pregnant women managing their Achalasia is very disheartening.
Would anybody that has experienced achalasia and pregnancy be able to comment or redirect me to any resources?
Hi there - how is your drinking in general? I find drinking warm / room temperature water much easier than cold beverages. I also find that I need to be super relaxed when consuming foods/beverages, so that my esophageal sphincter can also relax. I also spoke with a naturopath and he's reminded me that certain foods do tighten the esophageal sphincter, which should just always be avoided: greasy foods, fast food, spicy food, hard meats, chewy foods.
Hi there, sorry to hear that. I hope you're alright now? Have you considered dietary changes? After speaking with my naturopath, he advised on foods that I should eat / not eat. I was told to avoid steak at all costs, given that if it get stuck in the esophageal sphincter, it's not easy to pass let alone dissolve. If you have not already done so, I would consider doing more research on what to eat v. not eat, and how best to consume foods. Here is what has worked for me over the past 8 years, note that I have not had the surgery done yet:
-Eat foods that are softer, and more moist
-Avoid foods that are dry: chicken breast, steaks, sticky/doughy breads. Toast your breads so they're less sticky
-Have hot water with meals, this helps to relax the sphincter and break down food
-Eat small portions and eat more frequently throughout the day
-Avoid greasy foods and fast foods; these will only irritate the esophagus causing more damage
-Make sure you're consuming enough calories, I like to have a protein shake everyday, with fruits. I thin it out with oats milk.
-Eat in a relaxed environment where you can take deep breaths to relax the esophagus and sphincter. Eating when I'm stressed is a no-go, I will just have to cough up the food, it won't pass.
-When eating in social environments, eat slower than usual, small bites, lots of hot water between bites to know the previous bite has actually made it down to the stomach
-Avoid cold beverages and ice at all costs. Cold water or cold foods seem to snap shut my esophagus on the spot.
-Start the day with small meals and lots of beverages to the sphincter that has been shut all night can slowly begin to open. Tea and oatmeal is ideal, but whatever you prefer that's aligned with the above. I find having a large lunch without consuming any breakfast or hot beverage in the morning is so difficult because the sphincter has not had time to open (relax) yet.
-Finally, if you're at all stressed, rushed or just anxious, wait to eat. I have had times where I've tried to eat while stressed and it's results in food being lodged in my esophagus to the point where I cannot even have water until the food has passed. This can last up to two full days, it's hell.
-Tip: if you have food lodged in your esophagus, try having hot water or carbonated beverages. This can help accelerate breaking down the food.
-Tip: whenever I can, I eat around social settings, so before I go for drinks/social events. I prefer to not take on the added stress of eating in social environments and risk having to throw up my food to clear out my esophagus. It's a stressful cycle that only amplifies the tightening of the sphincter.
I hope some of my natural practices / habits are helpful for you. It's all trial and error and maybe some of these will help alleviate your issues. All the best and I hope you can avoid another surgery, and if you do end up having it, I wish you a safe and speedy recovery!!!
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1 ReactionI have achalasia and have been on a CPAP for two months and it has made a significant difference in the quality of my sleep. I love it. However, lately I'm beginning to fear that the air blowing into my mouth and lungs from the CPAP is making my Achalasia worse. Is anyone else with achalasia also on a CPAP and if so, what has been your experience with it in relation to your achalasia? Thank you.
I have also been using a CPAP for 2 months and have experienced pain that I believe is related to my achalasia.
I started having symptoms of achalasia when I was 7 or 8 years old and was on death's door when I was finally diagnosed at 14 (I had only gained 5 pounds over 6 years and weighed only 76 pounds when I had my open Heller Myotomy at 15). That was in 1985 and it honestly saved my life. Other than GERD I only notice issues related my achalasia a few times a year, but I can deal with that.
However, since starting CPAP I have experienced intense pain right around where my lower esophageal sphincter is. It has happened twice (once each month). After the first time, the doctor lowered my pressure from a max of 15 to 11. I'm waiting to hear back from him now regarding the second episode. The pain feels like an extreme muscle tear/stretch and it hurts to cough, laugh, or breathe very deeply. Last time it took a week to recover from it and I'm on day 3 this time. I can get through the day ok but the nights are horrible because any little movement causes pain. I can't use the CPAP when this happens.
I was wondering, has anyone else experienced this same thing? If so, what did you do for relief.
Hello @andreafl and welcome to Mayo Connect. You are asking good questions about the pain that seems to be related to the use of the CPAP machine. We do have a Sleep support group on Mayo Connect. Here is a link to discussions that talk about CPAP machines. Perhaps as you look through these discussions, you will find some helpful information.
--CPAP discussions
https://connect.mayoclinic.org/group/sleep-health/?search=Cpap#discussion-listview
I would also like to invite, John, @johnbishop, to this discussion as he is active in the Sleep support group and uses a CPAP. Perhaps he will recall any posts that speak about this problem.
Are you have any other problems related to CPAP usage? Did it help you to sleep better?
-
Like -
Helpful -
Hug
1 Reaction