g-tube

[Guest guest]

,

I am so jealous. We have to wait 3 months to get our button instead

of 3 weeks with the peg. 6 more weeks to go. YEAH!!!

Dana 10 w/cf Philip 4 wo/cf

[Guest guest]

a,

If you can make it liquid it can go into a g-tube. Most mito kids with g-tubes are given their supplements that way as well. When Branden was strictly g-tube fed I worked out a system of doing the coq10 through the tube when it would always adhere to the tube itself.

Unless there's a problem with aspiration and things like that you can definitely still eat orally. We did deal with aspiration for a while, but then it got better. Definitely it can be used to hydrate you. For the past couple of years Branden has had his strictly because when he's been ill he hasn't been able to tolerate oral feeds. He's had a Nissen Fundoplication for reflux which has made it impossible for him to throw up..... a lot of the reason for the g-tube at the end because you can open up the g-tube and the gas will come right out of it or if you've eaten too much you can pull some out if absolutely necessary.

A g-tube can be put in percutaneously (not sure if it's spelled that way) but basically it can be done while not under anesthesia, but I would think they would HAVE to do atleast some local anesthesia.

Let me know if there are any other questions.... and no question is a stupid question. Trust me. There are g-tube groups out there. Let me know if you're interested and I can send you some info. HUGS!!

[Guest guest]

,

I have so many questions, I don't know what they are!! :-) I am wondering why they think a g-tube rather than a port. I am pretty sure I would just be getting liquids to stay hydrated. Do they do that with GT's? My doctor mentioned I would be able to be awake while they put it in (if they do it, it would be awhile, as we have to get things documented). Is this normal? What all did you put in Branden's GT? Was he able to eat normally as well? I know those are probably stupid questions, but I will have more as I find out more information and will probably have more technical questions as well. Thanks! It is funny with the timing. I take it then, that g-tubes aren't permanent.

Thanks and smiles,

a

a,Fire away. I've done almost 5 years of g-tube with Branden and even a j-tube for a while. Funny that this topic is coming up today. Today was the day we finally removed Branden's GT. Let me know what questions you have.cindy

[Guest guest]

a

I am sorry you are having such problems.

I agree that looking doesn't say us mito folk are dehydrated. They thought

the same thing with my mother and the labs came back showing she definitely

was.

Hugs,

laurie

>

> Reply-To:

> Date: Mon, 28 Jul 2003 18:29:11 -0500

> To:

> Subject: G-tube

>

> Hi all! I was back at the doctors today, as things have not improved

> since Thursday. He says I am not dehydrated, as he could " tell by my

> tongue " . Okay, that works for some, but not for all! :-) He is very

> concerned with my difficulty swallowing. I go in for another visual

> pharengeogram tomorrow morning (I had one on June 20). He is getting

> together with a gastroenterologist, as he is thinking g-tube. Does

> anyone have experience with this? He wants the g-tube, as I can use it

> when needed.

> Thanks and smiles,

> a

>

>

[Guest guest]

Dear Kristie, i don't have a gtube, but I know quite a few people who

do on the yahoo GP site. There is also the Oley Foundation just

dedictated to people using tube feedings. i can understand how you

feel in a way. I too have problems swallowing and usually i feel

just to sick to eat. it would be nice to know I could get nutrition

if I needed it from a tube, but could eat also when I feel like it.

I know however, there are some difficulties in lookijng after the

tubes. Did he mention a j tube or a gj tube? Some people with Gp have

these, although personally my doc threatens me with a g tube. My

thinking is though, if the tum doesn;t work right- wouldn't a j (into

the jejunum) or gj tube be better. I don't know. Just my thoughts and

i wish you luck with your tests and decisions. Celia

-- In , a C Koch <kckoch76@j...>

wrote:

> Hi all! I was back at the doctors today, as things have not

improved

> since Thursday. He says I am not dehydrated, as he could " tell by

my

> tongue " . Okay, that works for some, but not for all! :-) He is

very

> concerned with my difficulty swallowing. I go in for another visual

> pharengeogram tomorrow morning (I had one on June 20). He is

getting

> together with a gastroenterologist, as he is thinking g-tube. Does

> anyone have experience with this? He wants the g-tube, as I can use

it

> when needed.

> Thanks and smiles,

> a

[Guest guest]

Celia,

Thanks for the thoughts. I am just starting down this road and am not even sure if the g-tube is going to be what happens. During my test today, I had no trouble swallowing of course! I am supposed to hear from the doctor soon about the specialist. I think we are just documenting things right now so in case I need the g-tube, things will be set. I am more calm about it today! :-)

Smiles,

a

Dear Kris tie, i don't have a gtube, but I know quite a few people who do on the yahoo GP site. There is also the Oley Foundation just dedictated to people using tube feedings. i can understand how you feel in a way. I too have problems swallowing and usually i feel just to sick to eat. it would be nice to know I could get nutrition if I needed it from a tube, but could eat also when I feel like it. I know however, there are some difficulties in lookijng after the tubes. Did he mention a j tube or a gj tube? Some people with Gp have these, although personally my doc threatens me with a g tube. My thinking is though, if the tum doesn;t work right- wouldn't a j (into the jejunum) or gj tube be better. I don't know. Just my thoughts and i wish you luck with your tests and decisions. Celia

[Guest guest]

Celia,

a and I are two different people. Mine is in fact a G/J tube or failing that TPN. Sounds like for a if they consider tubes and if it is only the valve that is malfunctioning a G tube would work just fine.

Kristie

Message: 2 Date: Tue, 29 Jul 2003 16:28:39 -0000 Subject: Re: G-tubeDear Kristie, i don't have a gtube, but I know quite a few people who do on the yahoo GP site. There is also the Oley Foundation just dedictated to people using tube feedings. i can understand how you feel in a way. I too have problems swallowing and usually i feel just to sick to eat. it would be nice to know I could get nutrition if I needed it from a tube, but could eat also when I feel like it. I know however, there are some difficulties in lookijng after the tubes. Did he mention a j tube or a gj tube? Some people with Gp have these, although personally my doc threatens me with a g tube. My thinking is though, if the tum doesn;t work right- wouldn't a j (into the jejunum) or gj tube be better. I don't know. Just my thoughts and i wish you luck with your tests and decisions. Celia -- In , a C Koch <kckoch76@j...> wrote:> Hi all! I was back at the doctors today, as things have not improved> since Thursday. He says I am not dehydrated, as he could "tell by my> tongue". Okay, that works for some, but not for all! :-) He is very> concerned with my difficulty swallowing. I go in for another visual> pharengeogram tomorrow morning (I had one on June 20). He is getting> together with a gastroenterologist, as he is thinking g-tube. Does> anyone have experience with this? He wants the g-tube, as I can use it> when needed. > Thanks and smiles,> a