Anyone on the list have gastroparesis?

[Guest guest]

Hi,

Vivian...So you do ok with the Reglan? No side effects? Also how do you

manage to not drink with your meals? I never used to drink with meals, but now

I

have to take so many supplements with my meals, I drink a large glass with

each meal. It is uncomfortable.

Kristie and Barbara.....I am so sorry to hear that you have had such a

severe problem with it. This mito really stinks. I have to hand it to any of

you

that have to have tpn or g tube feedings. I don't know how you do it. I

find it hard just having to limit my diet and not eat what everybody else eats,

let alone giving up eating all together.

Hi Celia............Thanks so much for all that helpful information. how do

you join the gastroparesis group? Is it a yahoo group? Sounds like the

medications are not always a solution. That doesn't surprise me. It often

seems

that medicine makes as many problems as it solves. In your case, I am glad you

have found something that is tolerable and is helping.

Dawn....Glad you are improving. That is great! I hope it continues to be

managable.

Hope I didn't miss anyone's post. :-)

Well, I am pretty certain I have it although it is not official. I have had

major eating problems for many years and GI docs and all their tests have

never figured out what the problem was. They all look at you like you couldn't

possibly be having that much trouble, since nothing shows up. Of course, I had

never heard of Mitochondrial disorders until last September. The last GI doc

I went to suggested it might be a functional disorder and I should look into

that.

I had an upper GI with the barium test. I know it took way too long for that

to pass my digestive tract. I took the test at the same time, three other

people were taking it and their test was finished about two hours before mine

was. The GI doc told me that was not significant.

So I looked up gastroparesis on a google search yesterday. I was amazed at

how it hit it on the head describing my symptoms. I also looked over the diet

suggestions and again, hit the nail right on the head. Everything that I find

difficult and have problems with are what it suggested avoiding. What I

manage to eat, are what they suggest eating. Isn't it amazing how you manage to

figure out what to do just by trial and error sometimes? But that information

does clarify and give form to the often vague knowledge you have that

something bothers you. I can understand how fat doesn't help, but I do wonder

why the

fiber is a problem? I manage to eat either toast or a 1/2 of bran muffin

every morning. I always thought bran helps move things along faster?

I was doing a lot better for a few months, but I recently overdid it being

outside and have been very disautonomic since. Headaches that won't quit,

temperature and sweating having a hard time regulating itself, major acid

indigestion and heartburn, two hours after I eat, I still feel full. The usual

I

guess. I never realized that the acid stomach was connected to the

gastroparesis,

but it certainly makes sense now that I think about it. Have any of you

noticed how the gastroparesis symptoms worsen after a relapse of the mito?

I had been tolerating solid foods and had been experimenting with chicken and

doing okay with it occassionally until the recent relapse. Now I am trying

to recover from the relapse. I am better today. I finally slept 5 hours

straight last night. That is always a good sign.

I have been keeping to non fat yogurt shakes for a few days and the acid

stomach has improved.

I can't see the GI doc that specializes in this until the end of September.

I have managed all this time, I am sure I can continue til then. Thanks for

all the help, I do hope to sign on to the gastroparesis group. Maybe your post

gave directions, Celia, I will look it over again.

Thank you all very much,

Adam

[Guest guest]

Adam

Have you had an EGD (tube down the throat to stomach) to make sure your acid

hasn't caused problems with your eshophagis. This can cause major scaring

and more problems if not treated.

laurie

> From: adamm321@...

> Reply-To:

> Date: Sun, 4 Jul 2004 06:06:57 EDT

> To:

> Subject: Anyone on the list have gastroparesis?

>

> Hi,

>

> Vivian...So you do ok with the Reglan? No side effects? Also how do you

> manage to not drink with your meals? I never used to drink with meals, but

> now I

> have to take so many supplements with my meals, I drink a large glass with

> each meal. It is uncomfortable.

>

> Kristie and Barbara.....I am so sorry to hear that you have had such a

> severe problem with it. This mito really stinks. I have to hand it to any of

> you

> that have to have tpn or g tube feedings. I don't know how you do it. I

> find it hard just having to limit my diet and not eat what everybody else

> eats,

> let alone giving up eating all together.

>

> Hi Celia............Thanks so much for all that helpful information. how do

> you join the gastroparesis group? Is it a yahoo group? Sounds like the

> medications are not always a solution. That doesn't surprise me. It often

> seems

> that medicine makes as many problems as it solves. In your case, I am glad

> you

> have found something that is tolerable and is helping.

>

> Dawn....Glad you are improving. That is great! I hope it continues to be

> managable.

>

> Hope I didn't miss anyone's post. :-)

>

> Well, I am pretty certain I have it although it is not official. I have had

> major eating problems for many years and GI docs and all their tests have

> never figured out what the problem was. They all look at you like you

> couldn't

> possibly be having that much trouble, since nothing shows up. Of course, I

> had

> never heard of Mitochondrial disorders until last September. The last GI doc

> I went to suggested it might be a functional disorder and I should look into

> that.

>

> I had an upper GI with the barium test. I know it took way too long for that

> to pass my digestive tract. I took the test at the same time, three other

> people were taking it and their test was finished about two hours before mine

> was. The GI doc told me that was not significant.

>

> So I looked up gastroparesis on a google search yesterday. I was amazed at

> how it hit it on the head describing my symptoms. I also looked over the diet

> suggestions and again, hit the nail right on the head. Everything that I find

> difficult and have problems with are what it suggested avoiding. What I

> manage to eat, are what they suggest eating. Isn't it amazing how you manage

> to

> figure out what to do just by trial and error sometimes? But that information

> does clarify and give form to the often vague knowledge you have that

> something bothers you. I can understand how fat doesn't help, but I do wonder

> why the

> fiber is a problem? I manage to eat either toast or a 1/2 of bran muffin

> every morning. I always thought bran helps move things along faster?

>

> I was doing a lot better for a few months, but I recently overdid it being

> outside and have been very disautonomic since. Headaches that won't quit,

> temperature and sweating having a hard time regulating itself, major acid

> indigestion and heartburn, two hours after I eat, I still feel full. The

> usual I

> guess. I never realized that the acid stomach was connected to the

> gastroparesis,

> but it certainly makes sense now that I think about it. Have any of you

> noticed how the gastroparesis symptoms worsen after a relapse of the mito?

>

> I had been tolerating solid foods and had been experimenting with chicken and

> doing okay with it occassionally until the recent relapse. Now I am trying

> to recover from the relapse. I am better today. I finally slept 5 hours

> straight last night. That is always a good sign.

> I have been keeping to non fat yogurt shakes for a few days and the acid

> stomach has improved.

>

> I can't see the GI doc that specializes in this until the end of September.

> I have managed all this time, I am sure I can continue til then. Thanks for

> all the help, I do hope to sign on to the gastroparesis group. Maybe your

> post

> gave directions, Celia, I will look it over again.

>

> Thank you all very much,

> Adam

>

>

>

>

>

>

[Guest guest]

Hi Laurie,

Yes, I realize that is important. I had a complete work up not long

ago. How do they treat scarring? Also, what prevents it from

happening? I have taken Mylanta when I am particularly acidy. I am

not all the time. More so when I am in a relapse. I am trying to be

very careful about activities that require bending forward, as that

seems to be a surefire way that I end up with acid. I can't seem to

time it so that it doesn't happen. I am also careful to stay in a

sitting up position for at least an hour after eating.

I can't go on an acid lowering medication as I do not digest well.

As a matter of fact, I need to supplement with digestive enzymes and

bile tablets. That is probably not helping. It seems you sort of

get into a catch 22. One thing that helps one problem makes another

worse.

Adam

> Adam

>

> Have you had an EGD (tube down the throat to stomach) to make sure

your acid

> hasn't caused problems with your eshophagis. This can cause major

scaring

> and more problems if not treated.

>

> laurie

>

> > http://docs.yahoo.com/info/terms/> .

[Guest guest]

Adam

If scarring is bad then stretching or surgery can become necessary. The

important thing is to not let it happen. There are several different classes

of drugs that are helpful. Carafate is one that doesn't prevent the acid

build-up, but coats the surface to prevent damage. It is a bit of a pain,

because it has to be taken an hour before eating, so some planning is

necessary. Have you seen a GI doc about this. Over the counter medications

can cause some of the same problems. I use crystallized ginger or gin-gin

hard candies to improve reflux and nausea. I do take one of the meds that

reduces the acid, but still need the ginger at times.

laurie

>

> Reply-To:

> Date: Sun, 04 Jul 2004 15:27:00 -0000

> To:

> Subject: Re: Anyone on the list have gastroparesis?

>

> Hi Laurie,

>

> Yes, I realize that is important. I had a complete work up not long

> ago. How do they treat scarring? Also, what prevents it from

> happening? I have taken Mylanta when I am particularly acidy. I am

> not all the time. More so when I am in a relapse. I am trying to be

> very careful about activities that require bending forward, as that

> seems to be a surefire way that I end up with acid. I can't seem to

> time it so that it doesn't happen. I am also careful to stay in a

> sitting up position for at least an hour after eating.

>

> I can't go on an acid lowering medication as I do not digest well.

> As a matter of fact, I need to supplement with digestive enzymes and

> bile tablets. That is probably not helping. It seems you sort of

> get into a catch 22. One thing that helps one problem makes another

> worse.

>

> Adam

>

>

>

>

>

>> Adam

>>

>> Have you had an EGD (tube down the throat to stomach) to make sure

> your acid

>> hasn't caused problems with your eshophagis. This can cause major

> scaring

>> and more problems if not treated.

>>

>> laurie

>>

>>> http://docs.yahoo.com/info/terms/> .

>

>

>

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>

>

>

>

[Guest guest]

Dear Adam, The gasroparesis support group is a yahoo one

at:http://healthgroups.yahoo.com. There are actually several gp

support groups, but this is the main one. Have you really given the

antiacid meds a good try- such as nexium, prevacid, etc. They work so

much better than Mylanta etc. other things for acid are avoiding

caffeine, alcohol, spice,acidic foods elevate the head of your bed

while sleeping, don't lie down until 3-4 hours after eating

(personally i can't do this, because I am always too tired to stay

up!). Unfortunately I don't think the digestive ensymes help Gp very

much, but have heard that the herbal med Iberogast (something like

that ) can help, Celia

> > Adam

> >

> > Have you had an EGD (tube down the throat to stomach) to make sure

> your acid

> > hasn't caused problems with your eshophagis. This can cause major

> scaring

> > and more problems if not treated.

> >

> > laurie

> >

> > > http://docs.yahoo.com/info/terms/> .