Re: Newly diagnosed Achalasia patient

[Guest guest]

Hi, jk! My esophogus was in very good condition: I regurged *a lot* -- daily,

for years, and the last six months, virtually 9 of 10 swallows. Food AND

liquid.

Nope. It's NOT going to reverse itself. If you do nothing, there will be

better periods, and worse ones. If you're not a regurger, your esophagus WILL

stretch. It will be stretching during what you consider good periods. . . .

There is only person that I'm aware of that has not had either a dilation or

surgery who's managing -- Ray in California is doing it.

achalasia/msearch?query=ray-me & submit=Searc\

h & charset=UTF-8 Read his posts and see if you wish to live that way for the

next twenty or thirty years. . . . I admire the shoot outta him for being

willing to do so, and used a great many of his hints during the period between

my hospitalization for dehydration/malnutrition and the diagnosis-to-surgery

period: pretty much kept me alive. But just *barely*

One of the catches is this: you're doing fine, getting along, and it turns into

a crisis overnight. And the medical profession is NOT set up to handle

achalasia crises overnight, so you spend a month or two or three simply

struggling *to stay alive* long enough to get the help you need. Most GIs have

no problem suggesting that Ensure will do a good job of keeping you alive after

the LES has permanently shut down. It *wont*. . . Even a crock pot and and all

blenderized diet is VERY iffy.

Lynn (and I) both lost most of our hair (her post a few down from you); Devin

just had a " surprise " Heller (also a few down) -- and was damned lucky to get

it. One woman (sorry her name is escaping me now) was getting IV rehydration

twice a week at the hospital while she waited. . . . and IIRC she's married to

an MD.

Do a lot a reading on this board over the next few days, (Notan is GREAT:

achalasia/msearch?query=not+an+ostrich & subm\

it=Search & charset=UTF-8 ) I think you'll be ready to commit to surgery. . . .

Best wishes and good luck!

(in wild and wonderful West Virginia)

>

> Well, I've not been officially diagnosed but all 3 tests, plus my

> symptoms, point to Achalasia. I'm a 59 year old male. My doctor told me

> that it's unusual for someone to come in whose esophagus is still in

> pretty good shape. He said that many people have it for many years

> before seeking help because they become accustomed to the symptoms until

> they get worse and become intolerable.

> I guess because I can't control Achalasia I was motivated to control

> what I can. Since just before Thanksgiving, I've been watching my

> calories and nutrition, running and working out with weight and am in

> the best shape of my life. I'm down about 15 pounds and it's not because

> of any problems eating. I don't know if there is a connection but my

> symptoms have become so mild, I don't know that I would have sought

> medical help if I was feeling as good as I am now.

> Still, from what I read, the disease is always progressive and so

> surgery is inevitable. Is that correct? Or are there people who opt to

> manage without surgery who have done okay for a long time? My next

> appointment is on Monday February 6th and at that point, I expect he'll

> strongly be advising me to have the surgery.

>

>

>

[Guest guest]

Hi JK

I am a lot older than you and have managed mine fine without ANY procedures.

Thanks to who showed my recent posts.

Mine started I believe about 73, maybe earlier as I had a heart bypass at age

67, so later I noticed at age 75 pressure in my chest when I walked up a big

hill to Mcs. I went to my Cardiologist and had a nuclear stress test on a

treadmill, which turned out great but I noticed pressure in the chest that

seemed to move around.

During the test the ECG ST level was at zero so normal, but something was in the

e that seemed to move around so I believe it was the start of Achalasia.

Then later I had indigestion in the night. After 3 years and four GI assholes I

got it diagnosed as Achalasia. All they wanted to do was put me on Nexium, which

never helped and made my stomach alkaline. Believe me with a alkaline stomach it

is hard to digest food.

Also PPIs like Nexium may cause a hip fracture if you fall and over 50 age,if

you have been on PPIs over 5 years, according to a FDA recent report.

At my age I decided to stay away from Doctors, after the bypass which neary

killed me. If you clean out the e at night, I drink a 16 oz bottle of water

while watching Leno, then regurgitate it out, standing over the toilet, this

stops the indigestion.

My other secrets are cold COKE from a can using the fizz to knock the food down,

magnesium 250 mg twice a day and real BUTTER which makes the food slip through.

And of course exercise, standing vertical and walking, just what you do. At this

time I am painting some of the house outside, keeps me busy and vertical up the

ladders. If I was inactive I could never handle the problem.

Yes Achalasia it is still a problem, once in awhile I wished I was

dead, but if I eat what works, I feel fine. We go out quit often and usually at

a salad bar can find items that slip through. I use Ensure plus , soups,

chocolate bars, cerial ( 5 gms fiber) with Lactaid 4%milk and ice cream.

At lunch a really toasted English muffin with 8 gms of fiber, a lot of butter

and cheese slices on the top, combined with Bushes brown beans mixed with a bit

of water and some butter. In the evening usually thin soup followed by ice cream

and maybe pumpkin pie.

Ray CA OC 81 old as dirt

>

> Well, I've not been officially diagnosed but all 3 tests, plus my

> symptoms, point to Achalasia. I'm a 59 year old male. My doctor told me

> that it's unusual for someone to come in whose esophagus is still in

> pretty good shape. He said that many people have it for many years

> before seeking help because they become accustomed to the symptoms until

> they get worse and become intolerable.

> I guess because I can't control Achalasia I was motivated to control

> what I can. Since just before Thanksgiving, I've been watching my

> calories and nutrition, running and working out with weight and am in

> the best shape of my life. I'm down about 15 pounds and it's not because

> of any problems eating. I don't know if there is a connection but my

> symptoms have become so mild, I don't know that I would have sought

> medical help if I was feeling as good as I am now.

> Still, from what I read, the disease is always progressive and so

> surgery is inevitable. Is that correct? Or are there people who opt to

> manage without surgery who have done okay for a long time? My next

> appointment is on Monday February 6th and at that point, I expect he'll

> strongly be advising me to have the surgery.

>

>

>

[Guest guest]

Thank you, .

> >

> > Well, I've not been officially diagnosed but all 3 tests, plus my

> > symptoms, point to Achalasia. I'm a 59 year old male. My doctor told me

> > that it's unusual for someone to come in whose esophagus is still in

> > pretty good shape. He said that many people have it for many years

> > before seeking help because they become accustomed to the symptoms until

> > they get worse and become intolerable.

> > I guess because I can't control Achalasia I was motivated to control

> > what I can. Since just before Thanksgiving, I've been watching my

> > calories and nutrition, running and working out with weight and am in

> > the best shape of my life. I'm down about 15 pounds and it's not because

> > of any problems eating. I don't know if there is a connection but my

> > symptoms have become so mild, I don't know that I would have sought

> > medical help if I was feeling as good as I am now.

> > Still, from what I read, the disease is always progressive and so

> > surgery is inevitable. Is that correct? Or are there people who opt to

> > manage without surgery who have done okay for a long time? My next

> > appointment is on Monday February 6th and at that point, I expect he'll

> > strongly be advising me to have the surgery.

> >

> >

> >

[Guest guest]

Thanks, Ray. I will be open-minded about surgery but I am more worried about the

surgery, and how that may turn out, than I am about Achalasia itself.

To lose weight, I eat small amounts of food 5 times a day and none of it after

six pm. As I'm sure other Achalasia patients do, I'm aware of when food passes

through the LES. By the time I go to bed, all that's left to regurgitate is

saliva and sleep as good as I ever have.

I have a doctor friend who was surprised I am considering surgery, but he is an

ER doc so it's not like he's an expert. I may become convinced that I need to do

it this year but there will be a lot of research first. I like knowing there is

at least one person who is getting by without surgery.

> >

> > Well, I've not been officially diagnosed but all 3 tests, plus my

> > symptoms, point to Achalasia. I'm a 59 year old male. My doctor told me

> > that it's unusual for someone to come in whose esophagus is still in

> > pretty good shape. He said that many people have it for many years

> > before seeking help because they become accustomed to the symptoms until

> > they get worse and become intolerable.

> > I guess because I can't control Achalasia I was motivated to control

> > what I can. Since just before Thanksgiving, I've been watching my

> > calories and nutrition, running and working out with weight and am in

> > the best shape of my life. I'm down about 15 pounds and it's not because

> > of any problems eating. I don't know if there is a connection but my

> > symptoms have become so mild, I don't know that I would have sought

> > medical help if I was feeling as good as I am now.

> > Still, from what I read, the disease is always progressive and so

> > surgery is inevitable. Is that correct? Or are there people who opt to

> > manage without surgery who have done okay for a long time? My next

> > appointment is on Monday February 6th and at that point, I expect he'll

> > strongly be advising me to have the surgery.

> >

> >

> >

[Guest guest]

Wow Ray - sounds like you are doing pretty well for a man your age. Activity and

excercise sure helps! Can't say I blame you for not wanting to see a bunch of

doctors who tell you different things. So long as you are manageing it, keep up

the good work and positive attitude!

 

Kim A 

________________________________

From: mer <ray_me_99@...>

achalasia

Sent: Saturday, January 28, 2012 11:16 PM

Subject: Re: Newly diagnosed Achalasia patient

 

Hi JK

I am a lot older than you and have managed mine fine without ANY procedures.

Thanks to who showed my recent posts.

Mine started I believe about 73, maybe earlier as I had a heart bypass at age

67, so later I noticed at age 75 pressure in my chest when I walked up a big

hill to Mcs. I went to my Cardiologist and had a nuclear stress test on a

treadmill, which turned out great but I noticed pressure in the chest that

seemed to move around.

During the test the ECG ST level was at zero so normal, but something was in the

e that seemed to move around so I believe it was the start of Achalasia.

Then later I had indigestion in the night. After 3 years and four GI assholes I

got it diagnosed as Achalasia. All they wanted to do was put me on Nexium, which

never helped and made my stomach alkaline. Believe me with a alkaline stomach it

is hard to digest food.

Also PPIs like Nexium may cause a hip fracture if you fall and over 50 age,if

you have been on PPIs over 5 years, according to a FDA recent report.

At my age I decided to stay away from Doctors, after the bypass which neary

killed me. If you clean out the e at night, I drink a 16 oz bottle of water

while watching Leno, then regurgitate it out, standing over the toilet, this

stops the indigestion.

My other secrets are cold COKE from a can using the fizz to knock the food down,

magnesium 250 mg twice a day and real BUTTER which makes the food slip through.

And of course exercise, standing vertical and walking, just what you do. At this

time I am painting some of the house outside, keeps me busy and vertical up the

ladders. If I was inactive I could never handle the problem.

Yes Achalasia it is still a problem, once in awhile I wished I was

dead, but if I eat what works, I feel fine. We go out quit often and usually at

a salad bar can find items that slip through. I use Ensure plus , soups,

chocolate bars, cerial ( 5 gms fiber) with Lactaid 4%milk and ice cream.

At lunch a really toasted English muffin with 8 gms of fiber, a lot of butter

and cheese slices on the top, combined with Bushes brown beans mixed with a bit

of water and some butter. In the evening usually thin soup followed by ice cream

and maybe pumpkin pie.

Ray CA OC 81 old as dirt

>

> Well, I've not been officially diagnosed but all 3 tests, plus my

> symptoms, point to Achalasia. I'm a 59 year old male. My doctor told me

> that it's unusual for someone to come in whose esophagus is still in

> pretty good shape. He said that many people have it for many years

> before seeking help because they become accustomed to the symptoms until

> they get worse and become intolerable.

> I guess because I can't control Achalasia I was motivated to control

> what I can. Since just before Thanksgiving, I've been watching my

> calories and nutrition, running and working out with weight and am in

> the best shape of my life. I'm down about 15 pounds and it's not because

> of any problems eating. I don't know if there is a connection but my

> symptoms have become so mild, I don't know that I would have sought

> medical help if I was feeling as good as I am now.

> Still, from what I read, the disease is always progressive and so

> surgery is inevitable. Is that correct? Or are there people who opt to

> manage without surgery who have done okay for a long time? My next

> appointment is on Monday February 6th and at that point, I expect he'll

> strongly be advising me to have the surgery.

>

>

>