Re: The shame of regurgitation just sharing

October 17, 2011

Does ice cream work? or protein shakes?

Chocolate is supposed to help open the LES...teeny bites, butter.

Coke works for some too (not for me)

You just have to get some nutrition into you to get you strong enough for

surgery.

We are rooting for you!!!!

in Santa Barbara

In a message dated 10/17/2011 3:05:38 P.M. Pacific Daylight Time,

scrlttmay@... writes:

Hello its me Scarlett again and as I thought today would be the day my

treatment would get rolling as me and my mother were on our way for my

appointment with esophegul surgeon at Ucla only to be called maybe an hour b4

the

appointment that he read my chart and doesn't think I would be a candidate

for surgery and should see a G.I first it was just so last minute that it

was a big blow. So now I'm in waiting for another appointment to get the okay

from my insurance and all that in the meantime however I am continuing to

lose weight I'm now 84 pounds =( I can only drink broth and things that use

to work now seem to have a difficulty which leads me to hearing " didn't

you know it wouldn't work going down " and I have no clue what will work

anymore ieverything always regurgitates and its gotten to the point where I am

soooooo hungry. It has just become extremely hard to live off broth when

every1 is eating yummy things and I just really miss it and feel so ashame d

of all my regurgitation. I can only hope to see a doctor soon. So this is me

sharing where I am today and wondering how did you guys cope with your

serious symptoms in regards to meals and hunger?

October 17, 2011

When I was at my worst I ate like a baby. A couple ounces every couple

hours...Ensure, Ice cream, protein shakes or anything that just slid down. I

have heard some people are using the gummy vitamins to help.

BC

>

> Does ice cream work? or protein shakes?

> Chocolate is supposed to help open the LES...teeny bites, butter.

> Coke works for some too (not for me)

>

> You just have to get some nutrition into you to get you strong enough for

> surgery.

> We are rooting for you!!!!

>

> in Santa Barbara

>

> In a message dated 10/17/2011 3:05:38 P.M. Pacific Daylight Time,

> scrlttmay@... writes:

>

> Hello its me Scarlett again and as I thought today would be the day my

> treatment would get rolling as me and my mother were on our way for my

> appointment with esophegul surgeon at Ucla only to be called maybe an hour b4

the

> appointment that he read my chart and doesn't think I would be a candidate

> for surgery and should see a G.I first it was just so last minute that it

> was a big blow. So now I'm in waiting for another appointment to get the okay

> from my insurance and all that in the meantime however I am continuing to

> lose weight I'm now 84 pounds =( I can only drink broth and things that use

> to work now seem to have a difficulty which leads me to hearing " didn't

> you know it wouldn't work going down " and I have no clue what will work

> anymore ieverything always regurgitates and its gotten to the point where I

am

> soooooo hungry. It has just become extremely hard to live off broth when

> every1 is eating yummy things and I just really miss it and feel so ashame d

> of all my regurgitation. I can only hope to see a doctor soon. So this is me

> sharing where I am today and wondering how did you guys cope with your

> serious symptoms in regards to meals and hunger?

>

October 17, 2011

Scarlett-

I went through the same thing with my son. He was 56 pounds at 9 years old. I

took him to the emergency room because he was obviously unhealthy. If you're

feeling that bad and losing so much weight, don't be afraid to go to the ER! I

read your post about the awful things your family has been through. But they can

access your medical records and see what's been going on. You don't want to get

to the point where losing weight becomes dangerous. If nothing stays down you

have to get help

Everything will work out for the best. This group is a wonderful gift for anyone

suffering from this. I'm sure all if the moms on here are worried about you!

Please let us know what's happening. I wish you and your family the best

Sent from my iPhone

On Oct 17, 2011, at 6:37 PM, " Barb C. " <bagwoman52@...> wrote:

> When I was at my worst I ate like a baby. A couple ounces every couple

hours...Ensure, Ice cream, protein shakes or anything that just slid down. I

have heard some people are using the gummy vitamins to help.

> BC

>

> >

> > Does ice cream work? or protein shakes?

> > Chocolate is supposed to help open the LES...teeny bites, butter.

> > Coke works for some too (not for me)

> >

> > You just have to get some nutrition into you to get you strong enough for

> > surgery.

> > We are rooting for you!!!!

> >

> > in Santa Barbara

> >

> > In a message dated 10/17/2011 3:05:38 P.M. Pacific Daylight Time,

> > scrlttmay@... writes:

> >

> > Hello its me Scarlett again and as I thought today would be the day my

> > treatment would get rolling as me and my mother were on our way for my

> > appointment with esophegul surgeon at Ucla only to be called maybe an hour

b4 the

> > appointment that he read my chart and doesn't think I would be a candidate

> > for surgery and should see a G.I first it was just so last minute that it

> > was a big blow. So now I'm in waiting for another appointment to get the

okay

> > from my insurance and all that in the meantime however I am continuing to

> > lose weight I'm now 84 pounds =( I can only drink broth and things that use

> > to work now seem to have a difficulty which leads me to hearing " didn't

> > you know it wouldn't work going down " and I have no clue what will work

> > anymore ieverything always regurgitates and its gotten to the point where I

am

> > soooooo hungry. It has just become extremely hard to live off broth when

> > every1 is eating yummy things and I just really miss it and feel so ashame d

> > of all my regurgitation. I can only hope to see a doctor soon. So this is me

> > sharing where I am today and wondering how did you guys cope with your

> > serious symptoms in regards to meals and hunger?

> >

October 17, 2011

I love how caring and responsive you guys are and thank you so much for all your

support. I have tried the gummy multivitamins but they like melted and flew back

up so I took the pill form and it worked =) I have also tried sips of ensure and

boost and even. Pediatlite with the same effects as the multivitamin. Tomatoes I

actually found work though iwith most food I have to regurgitate it and

reswallow for hours after eating it until finally I have to throw it up or my

mother sees me and thinks its better to let it out though I met a doctor who

said reswallowing may get nutrients in. I have no clue I mean even right now I

am regurgitating its becoming such a serious problem but I belive we have a

consultation on Friday and then hopefully get the ball rolling again because

while typing and reswallowing this is no way I thought people could live like.

You guys are truely so amazingly strong both parents of suffers of a and those

who have suffered. You truely do feel me which so much hope thank you

<grneyegrrl@...> wrote:

>Scarlett-

>

>I went through the same thing with my son. He was 56 pounds at 9 years old. I

took him to the emergency room because he was obviously unhealthy. If you're

feeling that bad and losing so much weight, don't be afraid to go to the ER! I

read your post about the awful things your family has been through. But they can

access your medical records and see what's been going on. You don't want to get

to the point where losing weight becomes dangerous. If nothing stays down you

have to get help

>Everything will work out for the best. This group is a wonderful gift for

anyone suffering from this. I'm sure all if the moms on here are worried about

you! Please let us know what's happening. I wish you and your family the best

>

>Sent from my iPhone

>

>On Oct 17, 2011, at 6:37 PM, " Barb C. " <bagwoman52@...> wrote:

>

>> When I was at my worst I ate like a baby. A couple ounces every couple

hours...Ensure, Ice cream, protein shakes or anything that just slid down. I

have heard some people are using the gummy vitamins to help.

>> BC

>>

>> >

>> > Does ice cream work? or protein shakes?

>> > Chocolate is supposed to help open the LES...teeny bites, butter.

>> > Coke works for some too (not for me)

>> >

>> > You just have to get some nutrition into you to get you strong enough for

>> > surgery.

>> > We are rooting for you!!!!

>> >

>> > in Santa Barbara

>> >

>> > In a message dated 10/17/2011 3:05:38 P.M. Pacific Daylight Time,

>> > scrlttmay@... writes:

>> >

>> > Hello its me Scarlett again and as I thought today would be the day my

>> > treatment would get rolling as me and my mother were on our way for my

>> > appointment with esophegul surgeon at Ucla only to be called maybe an hour

b4 the

>> > appointment that he read my chart and doesn't think I would be a candidate

>> > for surgery and should see a G.I first it was just so last minute that it

>> > was a big blow. So now I'm in waiting for another appointment to get the

okay

>> > from my insurance and all that in the meantime however I am continuing to

>> > lose weight I'm now 84 pounds =( I can only drink broth and things that use

>> > to work now seem to have a difficulty which leads me to hearing " didn't

>> > you know it wouldn't work going down " and I have no clue what will work

>> > anymore ieverything always regurgitates and its gotten to the point where I

am

>> > soooooo hungry. It has just become extremely hard to live off broth when

>> > every1 is eating yummy things and I just really miss it and feel so ashame

d

>> > of all my regurgitation. I can only hope to see a doctor soon. So this is

me

>> > sharing where I am today and wondering how did you guys cope with your

>> > serious symptoms in regards to meals and hunger?

>> >

October 17, 2011

Yes, this group has helped so many. This condition is so isolating, at first you

feel so alone, like no one understands you, not even the doctors. This group

listens, understands and offers experiences with the many complications.

Unfortunately the remedies are not " one size fits all. " Good luck to you!! Don't

be ashamed of what you can't control.

> >> >

> >> > Does ice cream work? or protein shakes?

> >> > Chocolate is supposed to help open the LES...teeny bites, butter.

> >> > Coke works for some too (not for me)

> >> >

> >> > You just have to get some nutrition into you to get you strong enough for

> >> > surgery.

> >> > We are rooting for you!!!!

> >> >

> >> > in Santa Barbara

> >> >

> >> > In a message dated 10/17/2011 3:05:38 P.M. Pacific Daylight Time,

> >> > scrlttmay@ writes:

> >> >

> >> > Hello its me Scarlett again and as I thought today would be the day my

> >> > treatment would get rolling as me and my mother were on our way for my

> >> > appointment with esophegul surgeon at Ucla only to be called maybe an

hour b4 the

> >> > appointment that he read my chart and doesn't think I would be a

candidate

> >> > for surgery and should see a G.I first it was just so last minute that it

> >> > was a big blow. So now I'm in waiting for another appointment to get the

okay

> >> > from my insurance and all that in the meantime however I am continuing to

> >> > lose weight I'm now 84 pounds =( I can only drink broth and things that

use

> >> > to work now seem to have a difficulty which leads me to hearing " didn't

> >> > you know it wouldn't work going down " and I have no clue what will work

> >> > anymore ieverything always regurgitates and its gotten to the point where

I am

> >> > soooooo hungry. It has just become extremely hard to live off broth when

> >> > every1 is eating yummy things and I just really miss it and feel so

ashame d

> >> > of all my regurgitation. I can only hope to see a doctor soon. So this is

me

> >> > sharing where I am today and wondering how did you guys cope with your

> >> > serious symptoms in regards to meals and hunger?

> >> >

October 17, 2011

I agree

Scarlett you (and your parents) are your best advocate! When you go to the

appointment make sure you get the answers you need! Unfortunately like Barb said

some doctors don't want to take the time. So make him. It's his/her job! I've

had to get downright mean (but not nasty) for my son on occasion. You know your

own body and how you feel. Don't ever let anyone discount that

Be persistent and you will be fine. And we are all here for you! Let us know how

it goes

Sent from my iPhone

On Oct 17, 2011, at 7:10 PM, " Barb C. " <bagwoman52@...> wrote:

> Yes, this group has helped so many. This condition is so isolating, at first

you feel so alone, like no one understands you, not even the doctors. This group

listens, understands and offers experiences with the many complications.

Unfortunately the remedies are not " one size fits all. " Good luck to you!! Don't

be ashamed of what you can't control.

>

> > >> >

> > >> > Does ice cream work? or protein shakes?

> > >> > Chocolate is supposed to help open the LES...teeny bites, butter.

> > >> > Coke works for some too (not for me)

> > >> >

> > >> > You just have to get some nutrition into you to get you strong enough

for

> > >> > surgery.

> > >> > We are rooting for you!!!!

> > >> >

> > >> > in Santa Barbara

> > >> >

> > >> > In a message dated 10/17/2011 3:05:38 P.M. Pacific Daylight Time,

> > >> > scrlttmay@ writes:

> > >> >

> > >> > Hello its me Scarlett again and as I thought today would be the day my

> > >> > treatment would get rolling as me and my mother were on our way for my

> > >> > appointment with esophegul surgeon at Ucla only to be called maybe an

hour b4 the

> > >> > appointment that he read my chart and doesn't think I would be a

candidate

> > >> > for surgery and should see a G.I first it was just so last minute that

it

> > >> > was a big blow. So now I'm in waiting for another appointment to get

the okay

> > >> > from my insurance and all that in the meantime however I am continuing

to

> > >> > lose weight I'm now 84 pounds =( I can only drink broth and things that

use

> > >> > to work now seem to have a difficulty which leads me to hearing " didn't

> > >> > you know it wouldn't work going down " and I have no clue what will work

> > >> > anymore ieverything always regurgitates and its gotten to the point

where I am

> > >> > soooooo hungry. It has just become extremely hard to live off broth

when

> > >> > every1 is eating yummy things and I just really miss it and feel so

ashame d

> > >> > of all my regurgitation. I can only hope to see a doctor soon. So this

is me

> > >> > sharing where I am today and wondering how did you guys cope with your

> > >> > serious symptoms in regards to meals and hunger?

> > >> >

October 17, 2011

Hi Scarlett. It's so important to keep your nutrition up - I know how painful

and scary it is when you can' even get water down!

I've been dealing with this disease for almost 10 years now and it's gotten

progressively worse. Trying to psyche up for the HM (and save the money). In the

meantime have done considerable research on nutrition and have come up with

something very effective for those days when you can pass liquid. It has the

scientific studies and clinical data proving effectiveness.

It's very important to have a high level of antioxidant intake - antioxidants

decrease our risk for cancer and other diseases, and help reduce inflammation.

(Dr. Oz talks about them here:

http://www.youtube.com/watch?v=Ayvr17F3epo & feature=email) Since we can't pass

fruits and veggies down our E, we need another source. There are many brands on

the market, but beware, not all are equal or effective. The same for vitamins -

gummies are horrid for bad stuff and they are not effectively absorbed anyway -

most vitamins just pass right through us.

I know we're not supposed to promote anything on this site - honestly just want

to share what I have found because it's so important to our general health and

healing. I've read so many posts sharing this problem and its so clear to me

that we all need something super effective to boost our nutrition. If you (or

anyone) want to learn more send me an email.

I hope you're able to get relief soon. Very important to stay hydrated and make

sure you get IV fluids - they will make you feel better and at least keep your

electrolytes in check.

Godspeed,

Kim

>

> Hello its me Scarlett again and as I thought today would be the day my

treatment would get rolling as me and my mother were on our way for my

appointment with esophegul surgeon at Ucla only to be called maybe an hour b4

the appointment that he read my chart and doesn't think I would be a candidate

for surgery and should see a G.I first it was just so last minute that it was a

big blow. So now I'm in waiting for another appointment to get the okay from my

insurance and all that in the meantime however I am continuing to lose weight

I'm now 84 pounds =( I can only drink broth and things that use to work now seem

to have a difficulty which leads me to hearing " didn't you know it wouldn't work

going down " and I have no clue what will work anymore ieverything always

regurgitates and its gotten to the point where I am soooooo hungry. It has just

become extremely hard to live off broth when every1 is eating yummy things and I

just really miss it and feel so ashamed of all my regurgitation. I can only hope

to see a doctor soon. So this is me sharing where I am today and wondering how

did you guys cope with your serious symptoms in regards to meals and hunger?

>

October 18, 2011

Maybe the surgeon is concerned that you are loosing so much weight and thinks

that you may not be strong enough for the surgery. I was in the same position as

you before my esophagectomy and they suggested that i have a PEG feeding tube

fitted for me to have nutrients to help build me up and gain some weight then

and only then was i considered for surgery. See what the GI says as it is a GI

who will fit the PEG for you. Good Luck and keep the group informed on haow

things are for you.

from the UK

________________________________

From: ScarlettM & lt;scrlttmay@... & gt;

achalasia

Sent: Monday, October 17, 2011 11:05 PM

Subject: The shame of regurgitation just sharing

Â

Hello its me Scarlett again and as I thought today would be the day my treatment

would get rolling as me and my mother were on our way for my appointment with

esophegul surgeon at Ucla only to be called maybe an hour b4 the appointment

that he read my chart and doesn & #39;t think I would be a candidate for surgery

and should see a G.I first it was just so last minute that it was a big blow. So

now I & #39;m in waiting for another appointment to get the okay from my insurance

and all that in the meantime however I am continuing to lose weight I & #39;m now

84 pounds =( I can only drink broth and things that use to work now seem to have

a difficulty which leads me to hearing & quot;didn & #39;t you know it wouldn & #39;t

work going down & quot; and I have no clue what will work anymore ieverything

always regurgitates and its gotten to the point where I am soooooo hungry. It

has just become extremely hard to live off broth when every1 is eating yummy

things and I just

really miss it and feel so ashamed of all my regurgitation. I can only hope to

see a doctor soon. So this is me sharing where I am today and wondering how did

you guys cope with your serious symptoms in regards to meals and hunger?

October 18, 2011

Hi Scarlett

Dont you use Ensure plus? I used to have 3 a day, that is 1000 calories. Now

just one, I use butter on everything, I put a teaspoon of butter in Bushes

beans, small beans, and add a little water. They go down great. And with Ensure

you get a lot of protein.

I get Ensure PLUS at Costco a 30 pack for $38, great buy.

I had 2 Endoscopes first before the manometry test and 2 barium swallows.

Ray CA OC 81