New to the group

[Guest guest]

So most of us that hang around are the unlucky ones!

> >

> >

> > There seems to be many of us that have had failed HM's

> >

> >

>

[Guest guest]

Hi ,

 

Welcome to our group. I haven't had myotomy yet and from what I have read I

would like to put it off forever!!! I was diagnosed in October of last year but

only lost 35 pounds. I think it is differnt for all of us. Some have better

outcomes thatn others. I hope you get some relief from the myotomy.

 

There is a wealth of knowledge here as many have lived with it for most of their

adult lives.

 

Good Luck.

 

Kim A

________________________________

From: kgrumpy19 <kgrumpy19@...>

achalasia

Sent: Tuesday, January 24, 2012 10:50 PM

Subject: New to the group

 

Hello all, I am new to the group and this is my first time posting.My name is

and i'm 26 years old. I was diagnosed with A in Dec 2011. My A progressed

pretty rapidly and I was not sure what was going on. I lost 80 lbs in 8 weeks

and was hospitalized for not being able to eat or drink anything whatsoever. My

case was pretty severe so the specialists I met with at UCLA medical center

decided that the Heller Myotomy w fundoplication was the best option for me. I

had my surgery Jan 12,2012 and was wondering what it's like after the surgery.

Does eating/drinking get easier? I know there might be many things I won't be

able to eat, but at this point I am lucky to be alive.I am currently on a soft

diet and am able to drink water/juice. Any advice or tips would be greatly

appreciated.

[Guest guest]

Yep, tired all the time. On top of all that my throat feels like I have

swallowed glass...it is so sore I can hardly even swallow pureed stuff!! I am

off to my GP to get my bloods done to see what I am lacking in. With all the

tests and specialist doctor appointments lately, I forgot to make sure the

regular stuff gets checked.

lack of energy is obviously something we have to put up with have A!

(Australia)

> > >

> > > Hello all, I am new to the group and this is my first time posting.My name

is and i'm 26 years old. I was diagnosed with A in Dec 2011. My A

progressed pretty rapidly and I was not sure what was going on. I lost 80 lbs in

8 weeks and was hospitalized for not being able to eat or drink anything

whatsoever. My case was pretty severe so the specialists I met with at UCLA

medical center decided that the Heller Myotomy w fundoplication was the best

option for me. I had my surgery Jan 12,2012 and was wondering what it's like

after the surgery. Does eating/drinking get easier? I know there might be many

things I won't be able to eat, but at this point I am lucky to be alive.I am

currently on a soft diet and am able to drink water/juice. Any advice or tips

would be greatly appreciated.

> > >

> >

> >

> >

> >

> >

[Guest guest]

I take vitamins. I just started taking the liquid B12 and found I have a little

more energy. My nails have been breaking off left and right too!. The HSN

vitamin I used to take is in pill form and hate crushing anything but may have

to try and see what happens. I will just add that to the Miralax I drink every

day!!!  I also work out but only like twice a week lately. And I recently

started drinking V8 smoothies. Hoping eventually to get it right!

 

Thanks

 

Kim A

________________________________

From: Caroll <carollb12112005@...>

achalasia

Sent: Wednesday, February 1, 2012 9:45 PM

Subject: Re: New to the group

 

Hi,

Before my HM I could barely swallow anything, always regurgitating so I started

drinking a lot of nutritional drinks such as Ensure and Boost (the High Protein

kind). My nails and hair grew long. Now, I don't drink it that much and noticed

my nails are very fragile and my hair was shedding. So I starting taking Hair,

Skin and Nail (HSN)vitamins, Multi-Vitamins, Omega 3, Vitamin D and B12 along

with massaging the scalp and exercising. Hope this helps.

> >

> > Hello all, I am new to the group and this is my first time posting.My name

is and i'm 26 years old. I was diagnosed with A in Dec 2011. My A

progressed pretty rapidly and I was not sure what was going on. I lost 80 lbs in

8 weeks and was hospitalized for not being able to eat or drink anything

whatsoever. My case was pretty severe so the specialists I met with at UCLA

medical center decided that the Heller Myotomy w fundoplication was the best

option for me. I had my surgery Jan 12,2012 and was wondering what it's like

after the surgery. Does eating/drinking get easier? I know there might be many

things I won't be able to eat, but at this point I am lucky to be alive.I am

currently on a soft diet and am able to drink water/juice. Any advice or tips

would be greatly appreciated.

> >

>

>

>

>

>

[Guest guest]

How sad and frustrating. Kind of like thanks for nothing huh? May be time to

find a doctor that can remember. We are a rare bunch dealt a crappy hand and I

would be a little put off by that.

Good luck !

 

Kim A

________________________________

From: " brandygarcia33@... " <brandygarcia33@...>

achalasia

Sent: Wednesday, January 25, 2012 10:17 PM

Subject: Re: Re: New to the group

 

Yes Dr Kline is a GI doctor there, I had a dilation in Nov. But no luck! I'm

going to him to see if he can help me. Since my Dr. didn't remember after being

seen by him 9 times. And having a HM he tried to diagnose me with the achalasia

again I about crap my pants. His nurse just put her head down with shame because

my dr (Dr Gupta in Bakersfield) didn't realize that he's been treating me with

this for a year!!

Sent via BlackBerry by AT & T

Re: New to the group

Hi ,

I am fairly new the group too (only been here since I got diagnosed last

September). I too just had my HM done (10 weeks ago), but sadly it didn't work.

Hope you have better success with yours. Like everyone else has said, there is

a wealth of useful information here and I am thankful for anything I can learn

on my journey with this horrible condition.

(Australia)

> >

> > Hello all, I am new to the group and this is my first time posting.My name

is and i'm 26 years old. I was diagnosed with A in Dec 2011. My A

progressed pretty rapidly and I was not sure what was going on. I lost 80 lbs in

8 weeks and was hospitalized for not being able to eat or drink anything

whatsoever. My case was pretty severe so the specialists I met with at UCLA

medical center decided that the Heller Myotomy w fundoplication was the best

option for me. I had my surgery Jan 12,2012 and was wondering what it's like

after the surgery. Does eating/drinking get easier? I know there might be many

things I won't be able to eat, but at this point I am lucky to be alive.I am

currently on a soft diet and am able to drink water/juice. Any advice or tips

would be greatly appreciated.

> >

>

[Guest guest]

Answers, lol! NOT in order. The LAST person I'd ask about nutrition is your

average MD, who had to take only one class in the subject to become a doctor.

By that standard, my ninth grade algebra class makes me a mathematician. . . .

Your hair is falling out/breaking off, long before you notice it's getting

thinner.

When you're losing weight against your will, your body is operating at a

calorie/nutrient/vitamin deficiency. It is *canalizing* itself.

The four months before my first hospitizaltion, I was running on average at

least 1750 calorie deficit. Which means of all the food I was eating, 50

calories were getting through. How long do doctors think one can live on 50

calories a day and NOT become malnourished? And to take up that deficit they

offer you a can of sugar water with oil, whey, and a vitamin pill. . . .

I've taken a B combo (either B50, or B100, or if I'm really stressed/pushed

B150)for about twenty years. Even with the amount of regurging I was doing

summer into fall, my urine never failed to be that wonderful florescent yellow,

so I know a good bit of it can be absorbed while still in the esophagus. So,

nope, I don't think the hair loss was a B deficiency.

More likely a protein deficiency. When you're starving, and know you are, you

are mostly pushing *calories* ~~ And the most caloric things we have available

to eat are the most empty of any nourishment. The calories can/will keep you

alive. But they won't keep you healthy. And hair is evidence of how healthy

you are or *have* been. I've got lotsa short stuff growing in. It's even

growing pretty fast. But it's still gonna take five years to get back down to

my waist. Alas.

Two ways to " lose " hair. You can lose it from the follicle, and/or with the

follicle. Or the hair can break off at a weak point after it's already out.

Our hair, like a chain, is only as strong as its weakest link. I'm used to

losing a lot of hair on brush outs. Have all my life. It's long, and right from

the follicle -- a follicle ready to go into rest. What I'm seeing now, and have

been for months, is hair broken off in much shorter pieces: at the weak link

from the summer.

Blenderized diets (the ones we're all pretty much eating just prior to

Heller/dilations and just after) tend to be extremely short on protein. I don't

particularly, for me and those I love, consider powdered protein anything

remotely ideal, so won't even go there. But after the wake up ER/hospital stay,

I really worked very hard on making sure I got enough. Mostly chicken pate, but

occasionally ham, hamburger, pork rib, liver, or tuna fish. I can see it in the

new hair: about two to three inches (which would date it back to about October).

Too short to do much with, but enough to raise hope that it's not gone forever,

lol!

Eat your protein kiddles!

> > >

> > > Hello all, I am new to the group and this is my first time posting.My name

is and i'm 26 years old. I was diagnosed with A in Dec 2011. My A

progressed pretty rapidly and I was not sure what was going on. I lost 80 lbs in

8 weeks and was hospitalized for not being able to eat or drink anything

whatsoever. My case was pretty severe so the specialists I met with at UCLA

medical center decided that the Heller Myotomy w fundoplication was the best

option for me. I had my surgery Jan 12,2012 and was wondering what it's like

after the surgery. Does eating/drinking get easier? I know there might be many

things I won't be able to eat, but at this point I am lucky to be alive.I am

currently on a soft diet and am able to drink water/juice. Any advice or tips

would be greatly appreciated.

> > >

> >

> >

> >

> >

> >

[Guest guest]

Hi

>lack of energy is obviously something we have to put up with have A!

Ask your doctor to check CBC for anemia.

Red Blood Cell Count

Hemoglobin

White Blood Cell Count

Mine all three are low and I am anemic since the A started. This causes the lack

of energy, of course it may be my age. I cant find a solution. Have had many

blood tests. Has been low for last 5-6 years, never had it checked before the A

started.

Ray CA OC 81

> > > >

> > > > Hello all, I am new to the group and this is my first time posting.My

name is and i'm 26 years old. I was diagnosed with A in Dec 2011. My A

progressed pretty rapidly and I was not sure what was going on. I lost 80 lbs in

8 weeks and was hospitalized for not being able to eat or drink anything

whatsoever. My case was pretty severe so the specialists I met with at UCLA

medical center decided that the Heller Myotomy w fundoplication was the best

option for me. I had my surgery Jan 12,2012 and was wondering what it's like

after the surgery. Does eating/drinking get easier? I know there might be many

things I won't be able to eat, but at this point I am lucky to be alive.I am

currently on a soft diet and am able to drink water/juice. Any advice or tips

would be greatly appreciated.

> > > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

I think they will check for all those you mentioned Ray.

> > > > >

> > > > > Hello all, I am new to the group and this is my first time posting.My

name is and i'm 26 years old. I was diagnosed with A in Dec 2011. My A

progressed pretty rapidly and I was not sure what was going on. I lost 80 lbs in

8 weeks and was hospitalized for not being able to eat or drink anything

whatsoever. My case was pretty severe so the specialists I met with at UCLA

medical center decided that the Heller Myotomy w fundoplication was the best

option for me. I had my surgery Jan 12,2012 and was wondering what it's like

after the surgery. Does eating/drinking get easier? I know there might be many

things I won't be able to eat, but at this point I am lucky to be alive.I am

currently on a soft diet and am able to drink water/juice. Any advice or tips

would be greatly appreciated.

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

yes .. you should be able to eat and drink much better. i had my myotomy in

sept. 2011.. i was down 70 pounds and could not even drink liquids. my hair was

coming out and i was finally really gettting scared. my mouth stayed dry ..

tongue was like a carpet.. i was taking iv bags ever week and more. and

potassium... my husband was even frightened and he is a MD... i am up about 25

pounds and really want to loose a little. i have had some challenges after the

myotomy.. took a bit to figure out what i could and could not eat. i still

cannot really eat bread.. and heavy stuff. like i can eat a hamburger sometimes,

but i find that i tend to over eat.. and that is when i sometimes have

trouble.,. i " thought " that i could not throw up but the other day i really got

on a  throw /regurg kick and got rid of my just eaten fish dinner. but was ok

afterwards. i think it was spasms... i realize that i have had this many many

years and did not know it .. i had just

adjusted my eating and ate carby stuff because it was what i COULD eat.

therefore i was fluffy... i really feel great now. i was in such a dark place. i

wanted to be able to drink mainly.. i used to think ,,, " MAN! i want to just

drink out of the water hose until i slosh "    and now i can.. you never think

about what a wonderous body and how intrically we are knit together until

something like this makes you aware of a small thing like a " swallowing tube! "

.... Be of good cheer.. things should get better and i really dont know what i

would have done with out my dear cheerful friends on this website. they

collectively have such a wealth of information and are so willing to help. It

has been a blessing to me. Kim Ellen in the Deep South

[Guest guest]

Hi Kim

>i still cannot really eat bread.

Toast it WELL WELL, twice really brown and add real butter, buter is a fat and

has been reported many times to open the LES, from a GERD report. I use an

English Muffin that has 8 gms of fiber. Follow it up with water, coffee or a

Coke.

Have it at lunch , not at night as fat it may cause indigestion during sleep.

>got rid of my just eaten fish dinner.

I use frozen Cod with a lot of batter, believe it is the fat around it that lets

it go through.

Ray CA OC 81

>

> yes .. you should be able to eat and drink much better. i had my myotomy in

sept. 2011.. i was down 70 pounds and could not even drink liquids. my hair was

coming out and i was finally really gettting scared. my mouth stayed dry ..

tongue was like a carpet.. i was taking iv bags ever week and more. and

potassium... my husband was even frightened and he is a MD... i am up about 25

pounds and really want to loose a little. i have had some challenges after the

myotomy.. took a bit to figure out what i could and could not eat. i still

cannot really eat bread.. and heavy stuff. like i can eat a hamburger sometimes,

but i find that i tend to over eat.. and that is when i sometimes have

trouble.,. i " thought " that i could not throw up but the other day i really got

on a  throw /regurg kick and got rid of my just eaten fish dinner. but was ok

afterwards. i think it was spasms... i realize that i have had this many many

years and did not know it .. i had just

> adjusted my eating and ate carby stuff because it was what i COULD eat.

therefore i was fluffy... i really feel great now. i was in such a dark place. i

wanted to be able to drink mainly.. i used to think ,,, " MAN! i want to just

drink out of the water hose until i slosh "    and now i can.. you never think

about what a wonderous body and how intrically we are knit together until

something like this makes you aware of a small thing like a " swallowing tube! "

.... Be of good cheer.. things should get better and i really dont know what i

would have done with out my dear cheerful friends on this website. they

collectively have such a wealth of information and are so willing to help. It

has been a blessing to me. Kim Ellen in the Deep South

>

>