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Achalasia

Posted by ladawki143 @ladawki143, Jul 7, 2011

Anyone else with achalasia from Mayo? I'm heading up to Rochester soon for surgery.

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Profile picture for Etsy
Etsy | @etsy | Feb 3, 2020
In reply to @margo42 "I am 46 and I was diagnosed with acalasia of the esophagus in 1992 (at age..." + (show)
Profile picture for Margo42 @margo42

I am 46 and I was diagnosed with acalasia of the esophagus in 1992 (at age 22) and underwent an esophageal myotomy and Nissan fundal plication. I have seen some of the best doctors (I have been told) at northwestern in Chicago, mayo in Rochester and most recently in the twin cities. I continue to have reflux and wake up every night with pain. Strangely- the only thing that helps is eating. Most acid blockers have not helped. I have been on omeprazole with mixed results. I also am often extremely bloated by the end of the day- or wake up bloated when I have "chest" or esophagus pain at night. I may have mild gastroparesis but have no stomach pain. I am very, very concerned about the damage the reflux is doing to my esophagus. I have started going through the usual battery of tests again and have my final two in sept. before I meet with my doctor again. Anyone else experience anything like this? Thank you!

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I also wanted to thank dandi 48. I had a endoscopy last year and of course had it done in the ENT's office (didn't like that) and didn't care for him either. Everything was fine then. This year I just had a colonoscopy, everything fine there, but the doctor was a gastro doctor and said he would take care of me for the acid reflux so am going to make an appointment with him and am going to have him do the endoscopy. Thanks

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Profile picture for Etsy
Etsy | @etsy | Feb 3, 2020
In reply to @margo42 "I am 46 and I was diagnosed with acalasia of the esophagus in 1992 (at age..." + (show)
Profile picture for Margo42 @margo42

I am 46 and I was diagnosed with acalasia of the esophagus in 1992 (at age 22) and underwent an esophageal myotomy and Nissan fundal plication. I have seen some of the best doctors (I have been told) at northwestern in Chicago, mayo in Rochester and most recently in the twin cities. I continue to have reflux and wake up every night with pain. Strangely- the only thing that helps is eating. Most acid blockers have not helped. I have been on omeprazole with mixed results. I also am often extremely bloated by the end of the day- or wake up bloated when I have "chest" or esophagus pain at night. I may have mild gastroparesis but have no stomach pain. I am very, very concerned about the damage the reflux is doing to my esophagus. I have started going through the usual battery of tests again and have my final two in sept. before I meet with my doctor again. Anyone else experience anything like this? Thank you!

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I also read on the internet that apple cider vinegar is very good as well but can have a few side effects eventually. Unfortunately, you do have to be consistent and follow a good diet as well. You know nothing spicey. Its a tough diet to follow. Good Luck

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Profile picture for Margo42
Margo42 | @margo42 | Feb 3, 2020

Thanks Elsie. I have tried apple cider vinegar which I think is the same idea but not consistently. I think I will try a nutritionist to get tested for food sensitivities. I've also tried this in the past without success but need to keep trying different things...

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Profile picture for dandl48 Dave
dandl48 Dave | @dandl48 | Feb 3, 2020
In reply to @margo42 "I am 46 and I was diagnosed with acalasia of the esophagus in 1992 (at age..." + (show)
Profile picture for Margo42 @margo42

I am 46 and I was diagnosed with acalasia of the esophagus in 1992 (at age 22) and underwent an esophageal myotomy and Nissan fundal plication. I have seen some of the best doctors (I have been told) at northwestern in Chicago, mayo in Rochester and most recently in the twin cities. I continue to have reflux and wake up every night with pain. Strangely- the only thing that helps is eating. Most acid blockers have not helped. I have been on omeprazole with mixed results. I also am often extremely bloated by the end of the day- or wake up bloated when I have "chest" or esophagus pain at night. I may have mild gastroparesis but have no stomach pain. I am very, very concerned about the damage the reflux is doing to my esophagus. I have started going through the usual battery of tests again and have my final two in sept. before I meet with my doctor again. Anyone else experience anything like this? Thank you!

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Elsie, Glad to hear your reflux has improved. One suggestion though is that if you haven't had a recent endoscopy is to have one. The reason being is that Barrett's esophagus, and Dysplasia which develops in Barretts from having reflux is painless and can continue to get worse while you no longer have reflux, developing into cancer without even having any symptoms. I know of a 35 year old man here in town who had reflux for a few years and then it stopped with a change of his lifestyle and is now battling for his life with stage 4 cancer in his esophagus which has now spread to his liver.

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Profile picture for dandl48 Dave
dandl48 Dave | @dandl48 | Feb 3, 2020
In reply to @dandl48 "Welcome Margo; I too have reflux, Barrett's Esophogus and nodules at the junction of my stomach...." + (show)
Profile picture for dandl48 Dave @dandl48

Welcome Margo; I too have reflux, Barrett's Esophogus and nodules at the junction of my stomach. I take 40 MG of Nexium 24 2 times a day plus D3 but I still have to watch my diet. I have been to the Mayo Clinic in Rochester 5 times (just returning from my 5 visit). As I have been told re food, don't eat it if it effects me. Everyone has certain food items that bother's them. My Barrett's has gone from High Grade dysplasia to no dysplasia and this last time I just had a small island of Barrett's that instead of getting a RFA,the Dr.cut it out. Good luck with your tests!

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Chocolate and food with garlic

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Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 3, 2020
In reply to @dandl48 "Welcome Margo; I too have reflux, Barrett's Esophogus and nodules at the junction of my stomach...." + (show)
Profile picture for dandl48 Dave @dandl48

Welcome Margo; I too have reflux, Barrett's Esophogus and nodules at the junction of my stomach. I take 40 MG of Nexium 24 2 times a day plus D3 but I still have to watch my diet. I have been to the Mayo Clinic in Rochester 5 times (just returning from my 5 visit). As I have been told re food, don't eat it if it effects me. Everyone has certain food items that bother's them. My Barrett's has gone from High Grade dysplasia to no dysplasia and this last time I just had a small island of Barrett's that instead of getting a RFA,the Dr.cut it out. Good luck with your tests!

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Thanks for answering my shout out to you Dandl48 and answering Margo. What types of foods affect you?

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Margo42 | @margo42 | Feb 3, 2020
In reply to @colleenyoung "Welcome to Connect @margo42. There are several members talking about reflux and gastroparesis in a variety..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Welcome to Connect @margo42.
There are several members talking about reflux and gastroparesis in a variety of discussions throughout Connect. @rsinger22 @ladysky @dandl48 @robbinr @danielad @rexanna @rexanna @pinkmk will you join me in welcoming Margo and adding your thoughts and experiences?

Margo, you may wish to read/take part in these discussions:
- I have acid reflux so bad it is coming up into my sinuses http://mayocl.in/2aLKaZm
- I am a relatively healthy person with a problem "bloated belly" http://mayocl.in/2biTqQF
- Barrett's esophagus, gastroesophageal reflux disease and acute gastritis http://mayocl.in/2aSjxzJ

I can imagine you're concerned about the damage risk reflux poses to your esophagus. What final tests do you have in September?

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Thanks Colleen. I am having an upper endoscopy and bravo ph monitoring test in September.

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Profile picture for dandl48 Dave
dandl48 Dave | @dandl48 | Feb 3, 2020
In reply to @margo42 "I am 46 and I was diagnosed with acalasia of the esophagus in 1992 (at age..." + (show)
Profile picture for Margo42 @margo42

I am 46 and I was diagnosed with acalasia of the esophagus in 1992 (at age 22) and underwent an esophageal myotomy and Nissan fundal plication. I have seen some of the best doctors (I have been told) at northwestern in Chicago, mayo in Rochester and most recently in the twin cities. I continue to have reflux and wake up every night with pain. Strangely- the only thing that helps is eating. Most acid blockers have not helped. I have been on omeprazole with mixed results. I also am often extremely bloated by the end of the day- or wake up bloated when I have "chest" or esophagus pain at night. I may have mild gastroparesis but have no stomach pain. I am very, very concerned about the damage the reflux is doing to my esophagus. I have started going through the usual battery of tests again and have my final two in sept. before I meet with my doctor again. Anyone else experience anything like this? Thank you!

Jump to this post

Welcome Margo; I too have reflux, Barrett's Esophogus and nodules at the junction of my stomach. I take 40 MG of Nexium 24 2 times a day plus D3 but I still have to watch my diet. I have been to the Mayo Clinic in Rochester 5 times (just returning from my 5 visit). As I have been told re food, don't eat it if it effects me. Everyone has certain food items that bother's them. My Barrett's has gone from High Grade dysplasia to no dysplasia and this last time I just had a small island of Barrett's that instead of getting a RFA,the Dr.cut it out. Good luck with your tests!

REPLY
2 replies
Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 3, 2020
In reply to @margo42 "I am 46 and I was diagnosed with acalasia of the esophagus in 1992 (at age..." + (show)
Profile picture for Margo42 @margo42

I am 46 and I was diagnosed with acalasia of the esophagus in 1992 (at age 22) and underwent an esophageal myotomy and Nissan fundal plication. I have seen some of the best doctors (I have been told) at northwestern in Chicago, mayo in Rochester and most recently in the twin cities. I continue to have reflux and wake up every night with pain. Strangely- the only thing that helps is eating. Most acid blockers have not helped. I have been on omeprazole with mixed results. I also am often extremely bloated by the end of the day- or wake up bloated when I have "chest" or esophagus pain at night. I may have mild gastroparesis but have no stomach pain. I am very, very concerned about the damage the reflux is doing to my esophagus. I have started going through the usual battery of tests again and have my final two in sept. before I meet with my doctor again. Anyone else experience anything like this? Thank you!

Jump to this post

Welcome to Connect @margo42.
There are several members talking about reflux and gastroparesis in a variety of discussions throughout Connect. @rsinger22 @ladysky @dandl48 @robbinr @danielad @rexanna @rexanna @pinkmk will you join me in welcoming Margo and adding your thoughts and experiences?

Margo, you may wish to read/take part in these discussions:
- I have acid reflux so bad it is coming up into my sinuses http://mayocl.in/2aLKaZm
- I am a relatively healthy person with a problem "bloated belly" http://mayocl.in/2biTqQF
- Barrett's esophagus, gastroesophageal reflux disease and acute gastritis http://mayocl.in/2aSjxzJ

I can imagine you're concerned about the damage risk reflux poses to your esophagus. What final tests do you have in September?

REPLY
1 reply
Profile picture for Kanaaz Pereira, Connect Moderator
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Feb 3, 2020
In reply to @amoll157 "45 year old male. Had 2 heller myotomy surgery and I need another one. My lower..." + (show)
Profile picture for amoll157 @amoll157

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

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Hello @amoll157,

I'm sorry you are going through so much, but I'm so glad you've found the Connect community. Here is some detailed information about Achalasia, and treatment from Mayo Clinic: http://mayocl.in/2kVYpyf

You may also be interested in connecting with other members in this discussion:
Achalasia of esophagus with reflux: http://mayocl.in/2cfhyny

I'm also tagging past members @dhuffman @ladawki143 @lee28 @sfrigon @klsxoxo @tammyjean @tgirl, with the hope they return with more insight for you.

@amoll157, what foods can you eat comfortably? Has your doctor ever suggested a fundoplication or (according to Mayo Clinic), a newer procedure, called peroral endoscopic myotomy (POEM)?

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