Anyone on the list have gastroparesis?

[Guest guest]

Hi Dawn, Kristie and Vivian,

Thanks for your responses. Yes, I am having trouble that appears to be

gastroparesis. I have not been tested for it yet, but I have been told by my

mito

specialist my symptoms sound like it. He is sending me to a specialist, but I

have to wait till the end of September.

I don't have diabetes, but rather lean toward hypogylcemia. I have other

symptoms that suggest dysautonomia, like you Dawn.

I was hoping you could share some information about it. Maybe what tests you

had to confirm it, how long you have had it, how you manage with it, and if

you know of an adult discussion group online about it.

Thanks,

Adam

[Guest guest]

I have had it for about 10 yrs now. I take reglan 4x a day. I also control

my portions. Don't drink much with my meals. I was dx'd with a barium test

with the x-ray tv you drink the barium drink slowly with a straw and they

observe it going through your system. Good luck!

Vivian

[Guest guest]

Adam,

Sorry to hear that you are deal with gastroparesis....it can be a pain. My

gastroparesis was dxd by blood work (looking for malnutrition and electrolyte

disturbances), upper endoscopy, gastric emptying study and electrogastrogram

(EGG). In the beginning I was treated with dietary changes ie: avoiding fats

and oils, avoiding high fiber foods (especially broccoli and cabbage) relying

heavily on liquids for nutritional supplements and having frequent small meals

4-6 times a day. I was also treated with a host of medications (Reglan,

domperidone, erythromycin...). Eventually however it was felt the best route

for me was a G/J tube and I'm now 100% tube fed. My small intestine isn't

cooperating at the moment so we are looking at the possibility of TPN.

There is, from what I understand, a very good gastroparesis group on yahoo, but

I'm not involved in it. Another mitoldie, Celia is and hopefully she will see

this and give you the information.

Let me know if you have any other questions.

Kristie

Message: 2

Date: Fri, 2 Jul 2004 23:24:59 EDT

From: adamm321@...

Subject: Anyone on the list have gastroparesis?

Hi Dawn, Kristie and Vivian,

Thanks for your responses. Yes, I am having trouble that appears to be

gastroparesis. I have not been tested for it yet, but I have been told by my

mito

specialist my symptoms sound like it. He is sending me to a specialist, but I

have to wait till the end of September.

I don't have diabetes, but rather lean toward hypogylcemia. I have other

symptoms that suggest dysautonomia, like you Dawn.

I was hoping you could share some information about it. Maybe what tests you

had to confirm it, how long you have had it, how you manage with it, and if

you know of an adult discussion group online about it.

Thanks,

Adam

[Guest guest]

Hi Adam, My GI history sounds a lot like Kristie's, including the

testing and list of meds tried. I have had a j-tube for a year, but

still eat small amounts of a few foods. I was on TPN several times

prior to the tube.

FYI, there is also a tubefeeding discussion group on Yahoo with lots

of knowledgable people. They have been invaluable help to us--

several nurses in the group--very practical suggestions that the

docs don't always know about.

Barbara

> Adam,

> Sorry to hear that you are deal with gastroparesis....it can be a

pain. My gastroparesis was dxd by blood work (looking for

malnutrition and electrolyte disturbances), upper endoscopy, gastric

emptying study and electrogastrogram (EGG). In the beginning I was

treated with dietary changes ie: avoiding fats and oils, avoiding

high fiber foods (especially broccoli and cabbage) relying heavily

on liquids for nutritional supplements and having frequent small

meals 4-6 times a day. I was also treated with a host of

medications (Reglan, domperidone, erythromycin...). Eventually

however it was felt the best route for me was a G/J tube and I'm now

100% tube fed. My small intestine isn't cooperating at the moment

so we are looking at the possibility of TPN.

>

> There is, from what I understand, a very good gastroparesis group

on yahoo, but I'm not involved in it. Another mitoldie, Celia is

and hopefully she will see this and give you the information.

>

> Let me know if you have any other questions.

> Kristie

>

> Message: 2

> Date: Fri, 2 Jul 2004 23:24:59 EDT

> From: adamm321@a...

> Subject: Anyone on the list have gastroparesis?

>

> Hi Dawn, Kristie and Vivian,

>

> Thanks for your responses. Yes, I am having trouble that appears

to be

> gastroparesis. I have not been tested for it yet, but I have been

told by my mito

> specialist my symptoms sound like it. He is sending me to a

specialist, but I

> have to wait till the end of September.

>

> I don't have diabetes, but rather lean toward hypogylcemia. I

have other

> symptoms that suggest dysautonomia, like you Dawn.

>

> I was hoping you could share some information about it. Maybe what

tests you

> had to confirm it, how long you have had it, how you manage with

it, and if

> you know of an adult discussion group online about it.

>

> Thanks,

> Adam

>

>

>

>

[Guest guest]

Can anyone tell me what is “gastroparesis”? I have GI problems, but have

never heard that term. Thanks. Clara

Clara

CJW526@...

Anyone on the list have gastroparesis?

Hi Dawn, Kristie and Vivian,

Thanks for your responses. Yes, I am having trouble that appears to be

gastroparesis. I have not been tested for it yet, but I have been told by

my mito

specialist my symptoms sound like it. He is sending me to a specialist,

but I

have to wait till the end of September.

I don't have diabetes, but rather lean toward hypogylcemia. I have other

symptoms that suggest dysautonomia, like you Dawn.

I was hoping you could share some information about it. Maybe what tests

you

had to confirm it, how long you have had it, how you manage with it, and

if

you know of an adult discussion group online about it.

Thanks,

Adam

[Guest guest]

--- Hi Adam! I have been diagnosed with gastroparesis for two years.

I tried Reglan, It did not help me much. Right now I am taking

Nexium for reflux. My symptome have been good lately and I have

been gaining weight. When I am symptomatic I change my diet and cut

back on fiber and fats.

Dawn

In , " wheatchild2 " wrote:

> Hi Adam, My GI history sounds a lot like Kristie's, including the

> testing and list of meds tried. I have had a j-tube for a year,

but

> still eat small amounts of a few foods. I was on TPN several times

> prior to the tube.

>

> FYI, there is also a tubefeeding discussion group on Yahoo with

lots

> of knowledgable people. They have been invaluable help to us--

> several nurses in the group--very practical suggestions that the

> docs don't always know about.

>

> Barbara

>

>

>

> > Adam,

> > Sorry to hear that you are deal with gastroparesis....it can be

a

> pain. My gastroparesis was dxd by blood work (looking for

> malnutrition and electrolyte disturbances), upper endoscopy,

gastric

> emptying study and electrogastrogram (EGG). In the beginning I

was

> treated with dietary changes ie: avoiding fats and oils, avoiding

> high fiber foods (especially broccoli and cabbage) relying heavily

> on liquids for nutritional supplements and having frequent small

> meals 4-6 times a day. I was also treated with a host of

> medications (Reglan, domperidone, erythromycin...). Eventually

> however it was felt the best route for me was a G/J tube and I'm

now

> 100% tube fed. My small intestine isn't cooperating at the moment

> so we are looking at the possibility of TPN.

> >

> > There is, from what I understand, a very good gastroparesis

group

> on yahoo, but I'm not involved in it. Another mitoldie, Celia is

> and hopefully she will see this and give you the information.

> >

> > Let me know if you have any other questions.

> > Kristie

> >

> > Message: 2

> > Date: Fri, 2 Jul 2004 23:24:59 EDT

> > From: adamm321@a...

> > Subject: Anyone on the list have gastroparesis?

> >

> > Hi Dawn, Kristie and Vivian,

> >

> > Thanks for your responses. Yes, I am having trouble that

appears

> to be

> > gastroparesis. I have not been tested for it yet, but I have

been

> told by my mito

> > specialist my symptoms sound like it. He is sending me to a

> specialist, but I

> > have to wait till the end of September.

> >

> > I don't have diabetes, but rather lean toward hypogylcemia. I

> have other

> > symptoms that suggest dysautonomia, like you Dawn.

> >

> > I was hoping you could share some information about it. Maybe

what

> tests you

> > had to confirm it, how long you have had it, how you manage with

> it, and if

> > you know of an adult discussion group online about it.

> >

> > Thanks,

> > Adam

> >

> >

> >

> >

[Guest guest]

Clara,

Basically with gastroparesis the stomach does not empty properly. There are any

number of reasons from diabetes to dysautonomia but in many cases the etiology

is unknown. For more information you can visit:

http://www.hmc.psu.edu/healthinfo/g/gastroparesis.htm A Hershey Medical Center

Site (FYI).

Kristie

Can anyone tell me what is " gastroparesis " ? I have GI problems, but have

never heard that term. Thanks. Clara

Clara