gastroparesis and EDS?

[Guest guest]

I have been having a hard time with my stomach or really my whole gi system

lately. I have looked like I was about 12 mos. pregnant! I finally realized

that much of it was from the gastroparesis which my regular gi doc didn't bother

to tell me much about taking care of last year when I was diagnosed. I was

given a sheet on it from a different gi doctor. I got to wondering though if it

were common among EDSers. I wondered if it were a musclar thing then maybe we

would be more succeptible. I know it can be related to uncontrolled diabetes

which does run in my family though.

Anyway... could GD be be one of those things that is fairly common among

EDSers and no one has ever put them together?

[Guest guest]

Hi Sue,

Yes , I would like to see that article. I thought that I had a copy around

here some where but I don't remember it mentioning GD. I have never talked to

anyone about it before. Do you mind my asking you about it ? Does it bother you

very often? How do you make it better? I think what I had been blaming on my

GERD, IBS and other Gi things has been this all along. The way I need to eat

(or rather not eat) to help to feel better makes such sense with gastroparesis.

I have had a bad spell now for about 10 days and when it is like this, there

are days that I can't stand up straight for the pain and can't wear anything

around my waste.

UGHGGUGUG!

In a message dated 1/17/04 12:00:11 AM Eastern Standard Time,

smginleyrn@... writes:

> In a message dated 1/16/04 6:37:58 PM Eastern Standard Time,

> Mdmssmile@... writes:

>

> << I got to wondering though if it

> were common among EDSers. >>

>

> Hi ,

>

> I too have been diagnosed with gastroparesis at Cleveland Clinic. The GI

> doc

> there said it is not an uncommon problem in EDSers......which I kind of knew

>

> already. Do you have the article on the Manifestations og Gi in EDS? I can

>

> send it along privately if you would like...I believe it might be mentioned

> in

> that article. Let me know.

>

> Hugs,

> Sue Ginley

[Guest guest]

,

No, I don't mind at all if you ask. I too have difficulty discerning it from

GERD, gastritis, etc. In fact it was initially thought I has severe

gastritis with inflammation around the pyloric area (the area where the food

passes

from the stomach out to the small intestine). They also blamed it on Crohn's,

but even after being treated for all that it wouldn't stop. After I went to

Cleveland Clinic, I was correctly diagnosed with it and treated properly. With

me not only did I have pain, but I had severe nausea and vomiting. I couldn't

stop it or control it at all. There probably are many reasons an individual

can have gastroparesis and in my case the GI doc said it was secondary to the

EDS. They did theorize that the reson I has so many arterial dissections was

because of the intractable nausea and vomiting.the vomiting increases the

pressure in the abdomen. this is probably not an issue in an EDS individual who

does not have a lot of arterial involvement.

I am currently on Nexium twice a day (highest dose), and have multiple meds

for nausea, which i don't have to take at all any longer. They did give me

information on a medicine available only in Canada called domperidone (sp?). It

is similar to Reglan, but does not cause the same side effects. I did get the

medicine, but I don't need it any longer. If yu need the info on how to go

about getting the medicine I can give it to you. If yu tolerate Reglan, than

there would be no real reason to go through the trouble. You have ot pay for

the medicine yourself. I felt in my case it was money well worth being spent,

since I couldn't take Reglan.

Hope this helps. Take care.

Hugs,

Sue

[Guest guest]

So, what is gastroparesis?

You mentioned not being able to stand up straight from the pain. has been

walking bent over all week.

I get the sudden cramping/gripping pain that makes me bend over, but 's

think is different.

just wondering.