Re: GI info - Sue

[Guest guest]

I know I didn't request this, Jill, but I certainly would be interested!

Thanks!

Lana

[Guest guest]

Jill,

I am interested in whatever you have, as every little bit helps. I have

nothing in that department as far as information goes, and since I have a lot

of GI probs., I would like something to give to my GI doc. Thanks, Sue G.

[Guest guest]

I have some GI info, but not the article mentioned on the list as printed in

EDS Today Sue, are you interested in what I have?

Jill

[Guest guest]

I'm also interested in GI tract issues! My father's family, which surely has EDS

because both my Grandmother and GReat-grandmother had classic symptoms, tend to

show only gum and GI problems consistently. [my great grandma had " something

like MS, but which never effected her mind and did not progress beyond use of

light cane " diagnosed in her early 20s; she died clear headed and still using

her cane in her mid-80s, around 1985. my grandmother had the velvet skin, but no

problems (except GI and dental)until around 50, when she decided to go hiking

high elevation... she had heart probs and was helicoptered down...they

discovered a huge (nickel size?)hole in her heart, apparently had developed

spontaneously + slow enough that her body compensated and she never

noticed....well, they put her on coumadin (warfarin), and she rapidly developed

such fragile, bruisable skin that after a few years she fell and her leg split

open and she was bedridden 2 years (hospitalized 1 of them)before the wound

stopped turning black and spreading... by then she was too fragile to try heart

transplant, she hit her leg in the shower a year later, again wouldn't heal, and

died of blood infection from too long imobilized in hospital!!! If that wasn't

EDS, I can't imagine where I got skin/organ probs.... No one ever used the term

for her, though, because prior to coumadin her only problematic symptoms were

fragile gums/severe gum disease and GI (the inflammatory, " irritable

bowel " , " hernia " ,and " ulcer " type issues mostly). Anyway, that (much more than

the usual bruising/flexibility/scarring probs)is what most of my Dad's family

has. All sorts of GI and gum problems!!] I am interested because I had damaged

a ligament a few years ago (really bad cramps!!!)which apparently connected my

diaphram to one of my (4th?)ribs... I get little spasms there now and again,

some MD suggested diverticulosis too?, but in Jan. this year had little

flu-like stomach ache one night and then colic-like cramps developed whenever I

ate for 3 months...VERY debilitating I kept going to MDs to seek cause...end of

FEB was in hospital because for some reason had fast pulse, low blood pressure

that was getting worse, not better over week. got a really good hematologist and

have continued seeing him. He suggested irritable bowel, and had me try

citrocele and 20mg pepcid. well, it is not irritable bowel I don't think because

citrocele makes it much worse, but for some reason the pepcid seems to help! (It

is not bothered by acidic food, so not ulcer, anyway it is CRAMPS not burn). I

met the mother of another EDS person recently who said her kid also used

prescription pepcid for some obscure stomach prob. (but he eventually got off,

uses only as needed. My cramps come back if I skip a day...). I would like to

know if other EDS people have such obscure GI probs... (maybe some sort of

accute stomach lining inflammation?) thanks so much!

Sascha

--- smginleyrn@...

> wrote:

>Jill,

>I am interested in whatever you have, as every little bit helps. I have

>nothing in that department as far as information goes, and since I have a lot

>of GI probs., I would like something to give to my GI doc. Thanks, Sue G.

>

>