Re: Anyone on the list have gastroparesis?/gpda campaignes

[Guest guest]

Hi Adam, Sorry I didn't see your post earlier. I am a former moderator

on the yahoo " gastroparesis suport group and they are a mine of info

and support. Another excellent source of info is at www.gpda.net, but

this is not a support group. I am active in this group too and they

have a number of initiatives going right now which you can find out

about on their site. I have have gastroparesis for 15 years and still

do not require any tube feedings. I am lucky in that I respond very

well to medications. Reglan is the most common one prescribed in the

US, but unfortunately it has many nasty side effects. Propulsid is a

great drug for GP but it was pulled from the market after a few

cardiac deaths (which they now know is related to the long QT

syndrome.) One of the things GPDA is lobbying for is to have this drug

reinstated. Another good drug, which I use is called domperidone, but

it has to be bought through Canada (or another country) and it's

import is being blocked by Congress (again GPDA has a big campaigne

on to stop this ban on the dom. it is not as good as propulsidor

reglan, but lacks the side effefts of Reglan . I am presently on a new

drug is the GP arsenal- zelnorm (tegazerod)This drug was originally

developed for constipation dominant IBS but used in higher doses it

has proved useful in the treatment of GP. I know it has made the world

of difference to me. There are also various antinauseants you can try

and treatment usually includes some kind of anti acid medication to

try and control the refux that so often goes with GP. The best test

for diagnosis of Gp is the Gastric Emptying scan, that Kristie

mentioned. Barium is not usually recommended because it is so heavy

and hard to leave the gp affected tum.The diet depends on the severity

of your symptoms: low fat and low fiber, low spice, avoid the

brocholi, cabbage and cauliflower, cooked veggies are easier to digest

as are cooked fruits- all with their skins off. Red meat tends to

cause problems- fish and chicken are better tolerated. Health drinks

can be made with various fruit, milk, yogurt ingredients and many

people find that eggs go down well.Coffee and (caffinated) tea are

frequent irritants and of course theer is alcohol... Frequent small

meals and snacks, sipping liquids throughout the day gets the intake

in. I find cold diet pepsi really settles my stomach, but a lot of

people find the opposite. If you have any more questions feel free to ask.

And any other Mitolodies on this site, feel free to contact

www.gpda.net to become part of their lobby group. I, in particular am

trying to organize a CANADIAN lobby right now, and if anyone is

interested please feel free to email me. Celia

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