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,

I should have included this as well.

A PEG is used in long term feeding. There are other, temporary, feeding tubes which are inserted through the mouth which normally wouldn't be applicable to HD therefore I am not addressing those. A PEG tube, which has about a 3 inch tube protruding from the incision area, can be concealed by clothing but is a little "snaky" since it's a tube. There is a "button" tube which can be installed a couple of weeks after the surgery. will get this. It is supposedly flush to the body

HD is Hunnington Disease that sometime drastically affects swallowing

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  • 6 months later...
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Debbi,

Thank

you so very much for your email and options. My grandfather has been living

with achalasia since 1946 and is now faced with having to get a feeding tube. I

will check out the other groups you referenced. Thank you again. I truly appreciate

it.

From: Debbi Heiser

[mailto:heiser@...]

Sent: Monday, May 10, 2004 9:09 PM

achalasia

Subject: Re: Feeding

Tube

, I'm not sure you're going to find much help in this

group. I'm

sorry, but I don't know of anyone who is on this

board that has a feeding

tube. There may be a few here and there who

had a tube immediately after

surgery, but that's probably about it.

A search of did come up with these,

though:

feeding_g-tubes/

tubefeedinggroup/

tubefeeding/

I hope you can find some support! I know

this group has been invaluable

in my own situation, and support can make such a

difference in your life

when dealing with health issues that affect your

day-to-day living.

Debbi

> I am looking for anyone who might have

information on life after a

> feeding tube. I have several questions re:

care of the device, the

> change of foods, the possible change in the

digestive process and

> the administration of medications.

>

> I would appreciate any information anyone can

provide. Thank you for

> your help.

>

> Sincerely,

> (I am writing for my grandfather

Gene.)

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,

Does your grandfather get home care? A visiting nurse? This type of

information is part of the post-op education process is should be

provided to you by your discharge team. The visiting/discharge/home

health nurse needs to ascertain that you/your family must demonstrate

competency/comfort in caring for a feeding tube, plus all the

teaching that go with it. It is imperative that you follow up with

your attending physician and if you have a " nagging " feeling of

discomfort with the people giving you these very important

instructions, please do not hesitate to seek others out who will have

your best interests at heart in your home area.

I can honestly say that this site has the SMARTEST--achalasians (is

there such a term?), most POSITIVE people I have ever " internet

met " . I would not hesitate to take the information about Achalasia--

the little tricks sure help!! Thank you all for that. I suggest

that you refer all of these questions to your attending

physician, who may refer you to the appropriate personnel. Ask for

home health visits, etc., until you are satisfied and feel confident

about caring for someone with a feeding tube.

In achalasia , " heatherkkoenig " <equ1po1se@c...>

wrote:

> I am looking for anyone who might have information on life after a

> feeding tube. I have several questions re: care of the device, the

> change of foods, the possible change in the digestive process and

> the administration of medications.

>

> I would appreciate any information anyone can provide. Thank you

for

> your help.

>

> Sincerely,

> (I am writing for my grandfather Gene.)

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Jo wrote:

I can honestly say that this site has the SMARTEST--achalasians (is there such a term?), most POSITIVE people I have ever "internet met". I would not hesitate to take the information about Achalasia--the little tricks sure help!! Thank you all for that.

Jo, we don't know if there is such a term as "Achalasians" but several of us in the group use it often around here... makes us sound kinda like some sort of "alien race" or something, doesn't it??? ;o) I like it a lot better than "patients", too, as that implies sickness or hospitalization, and in most cases we Achalasians are able to live quite happy and healthy and productive lives.

I am SO GLAD that you've found positive, helpful support here. That's what this group is all about, and it gives me (and others, I'm sure!) a warm fuzzy feeling to know that someone else is able to use the little tricks and tips and research that we've learned (in many cases the hard way, and in some cases by sheer luck!) to their advantage.

Some of my best friends -- I consider many of them to be family, really -- I have met via the internet. Yes, there are some shysters out there, and a few people who are just negative people and downright "meanie-butts" (can you tell I have a preschooler? LOL) But by and large, the people I've met in this group and others have been invaluable to me. Welcome to our funky little family! ;o)Debbi in Michigan

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Hey Sister Deb!!!! Speak for yourself! I

am NOT FUNKY!!!!! LOL

(I thought Achalasians

were an exotic group from the Island of Achalasia…somewhere out in the South Pacific Islands…am I wrong about this???)

BTW Jo, Welcome to our little Achalasia

family!!!

Sister

Sandi

Re: Re:

Feeding Tube

Jo

wrote:

I can honestly say that this site has the

SMARTEST--achalasians (is

there such a term?), most POSITIVE people I have

ever " internet

met " . I would not hesitate to take the

information about Achalasia--

the little tricks sure help!! Thank you all

for that.

Jo,

we don't know if there is such a term as " Achalasians " but several of

us in the group use it often around here... makes us sound kinda like some

sort of " alien race " or something, doesn't it??? ;o)

I like it a lot better than " patients " , too, as that implies sickness

or hospitalization, and in most cases we Achalasians are able to live quite

happy and healthy and productive lives.

I am

SO GLAD that you've found positive, helpful support here. That's what

this group is all about, and it gives me (and others, I'm sure!) a warm fuzzy

feeling to know that someone else is able to use the little tricks and tips and

research that we've learned (in many cases the hard way, and in some cases by

sheer luck!) to their advantage.

Some

of my best friends -- I consider many of them to be family, really -- I have

met via the internet. Yes, there are some shysters out there, and a few

people who are just negative people and downright

" meanie-butts " (can you tell I have a preschooler? LOL) But by

and large, the people I've met in this group and others have been invaluable to

me. Welcome to our funky little family! ;o)

Debbi in Michigan

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hahahhahahah- Debbi - I swear I wrote the Star Trek thing before I read your post below! Cindi

-- Re: Re: Feeding Tube

Jo wrote:

I can honestly say that this site has the SMARTEST--achalasians (is there such a term?), most POSITIVE people I have ever "internet met". I would not hesitate to take the information about Achalasia--the little tricks sure help!! Thank you all for that.

Jo, we don't know if there is such a term as "Achalasians" but several of us in the group use it often around here... makes us sound kinda like some sort of "alien race" or something, doesn't it??? ;o) I like it a lot better than "patients", too, as that implies sickness or hospitalization, and in most cases we Achalasians are able to live quite happy and healthy and productive lives.

I am SO GLAD that you've found positive, helpful support here. That's what this group is all about, and it gives me (and others, I'm sure!) a warm fuzzy feeling to know that someone else is able to use the little tricks and tips and research that we've learned (in many cases the hard way, and in some cases by sheer luck!) to their advantage.

Some of my best friends -- I consider many of them to be family, really -- I have met via the internet. Yes, there are some shysters out there, and a few people who are just negative people and downright "meanie-butts" (can you tell I have a preschooler? LOL) But by and large, the people I've met in this group and others have been invaluable to me. Welcome to our funky little family! ;o)Debbi in Michigan

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

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--- Thank you all!!

Jo

In achalasia , " Holt- " <holt-smith@c...>

wrote:

> Hey Sister Deb!!!! Speak for yourself! I am NOT FUNKY!!!!! LOL

>

> (I thought Achalasians were an exotic group from the Island of

> Achalasia.somewhere out in the South Pacific Islands.am I wrong

about

> this???)

>

> BTW Jo, Welcome to our little Achalasia family!!!

>

> Sister Sandi

>

> Re: Re: Feeding Tube

>

> Jo wrote:

> I can honestly say that this site has the SMARTEST--achalasians (is

> there such a term?), most POSITIVE people I have ever " internet

> met " . I would not hesitate to take the information about Achalasia-

-

> the little tricks sure help!! Thank you all for that.

>

> Jo, we don't know if there is such a term as " Achalasians " but

several

> of us in the group use it often around here... makes us sound kinda

like

> some sort of " alien race " or something, doesn't it??? ;o) I like

it a

> lot better than " patients " , too, as that implies sickness or

> hospitalization, and in most cases we Achalasians are able to live

quite

> happy and healthy and productive lives.

>

> I am SO GLAD that you've found positive, helpful support here.

That's

> what this group is all about, and it gives me (and others, I'm

sure!) a

> warm fuzzy feeling to know that someone else is able to use the

little

> tricks and tips and research that we've learned (in many cases the

hard

> way, and in some cases by sheer luck!) to their advantage.

>

> Some of my best friends -- I consider many of them to be family,

really

> -- I have met via the internet. Yes, there are some shysters out

there,

> and a few people who are just negative people and downright

> " meanie-butts " (can you tell I have a preschooler? LOL) But by and

> large, the people I've met in this group and others have been

invaluable

> to me. Welcome to our funky little family! ;o)

>

> Debbi in Michigan

>

>

>

>

>

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Sandi Wrote:

> Hey Sister Deb!!!! Speak for yourself! I am NOT FUNKY!!!!! LOL

Heh... you haven't seen the video of your snoring in the hotel room......

<evil sadistic cackle>

Deb, who just LOVES a good blackmailing.....LOL

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> hahahhahahah- Debbi - I swear I wrote the Star Trek thing before I read

> your post below! Cindi

Cindi, just another case of " great minds think alike " !!! Glad to hear the

cinnamon bun was delish!

Deb, another " great mind " ....???? LOL

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