Re: support

[Guest guest]

Louise,

Please do not worry about finding the " right " words, just join in. I know that

it is nice to

have someplace to talk about something that no one else (who didn't have it)

could possibly

understand. Therefore, your input is as valuable as the rest of us, because of

the benefit it

provides for you. The group tends to be cranky at times, I think it is a side

effect of the

day to day realities of living with the condition. It is also loving,

supportive, caring,

informative, and funny. One can learn to ignore the crankiness, for all of the

other good

things.

So just jump in and enjoy.

Jo from Mo

[Guest guest]

Hey , Instead of piddling on your leg why not try an old Vermont folk

remedy. Put some good apple cider vinegar in your cupped hand and massage

your offending limb/limbs till the vinegar is absorbed. It's supposed to

help postherpetic pain from shingles. What the hey, it can't harm. You may

go around smelling like a tossed salad for a while but what do you care!!

CHEERS!!

Jeanne and Mr. Biggles in Poultney VT

PS I'm going downstairs to fix myself a honey/vinegar cocktail right now

(2tsp each of honey and vinegar in a glass of ice cold water, sip and

enjoy).

[Guest guest]

Hey , Instead of piddling on your leg why not try an old Vermont folk

remedy. Put some good apple cider vinegar in your cupped hand and massage

your offending limb/limbs till the vinegar is absorbed. It's supposed to

help postherpetic pain from shingles. What the hey, it can't harm. You may

go around smelling like a tossed salad for a while but what do you care!!

CHEERS!!

Jeanne and Mr. Biggles in Poultney VT

PS I'm going downstairs to fix myself a honey/vinegar cocktail right now

(2tsp each of honey and vinegar in a glass of ice cold water, sip and

enjoy).

[Guest guest]

Hey , Instead of piddling on your leg why not try an old Vermont folk

remedy. Put some good apple cider vinegar in your cupped hand and massage

your offending limb/limbs till the vinegar is absorbed. It's supposed to

help postherpetic pain from shingles. What the hey, it can't harm. You may

go around smelling like a tossed salad for a while but what do you care!!

CHEERS!!

Jeanne and Mr. Biggles in Poultney VT

PS I'm going downstairs to fix myself a honey/vinegar cocktail right now

(2tsp each of honey and vinegar in a glass of ice cold water, sip and

enjoy).

[Guest guest]

Thank you . I feel very fortunate to find some kind of support. It

was a lonely three years from Diagnosis till now. I was lucky and diagnosed

during my first severe attack. I just can't imagine suffering for so many years

with no help.

I guess I will send the draft of the letter I wrote about me to introduce

myself. I have a lot of questions. One is what is TPN? There are so many

terms being used that I don't understand that this is a bit over my head. My

youngest are 18 year old twins, so fortunately I am out of the pediatric

business although I have a 6 month old grandson so am getting my hand back in a

bit. He is just being introduced to food and I am nervous about allergies.

Will go finish that letter and send it now that I finally got brave enough to

jump in.

Judy

Re: [eosinophilic gastroenteritis] support

Hi Judy and welcome to the list! You will find a great deal of support here.

I welcome you particularly as another adult patient. I have EE and have been

frustrated by the ignorance of the adult GI community regarding eosinophilic

disease. All five of my sons have it too, and there seems to be a great deal of

information available in the pediatric community that the adult GIs are not

getting. My diagnosis was made only AFTER two of my kids were diagnosed after

over 30 years of severe symptoms (I was TPN dependent twice PRIOR to the

diagnosis).

Again, welcome. And OOOH-RAH..

(eos esophagitis/GT, former TPNr)

(Mom to 5 with EE/GTs; , , Korey, Kody (TPN), Killian

[Guest guest]

Judy, Hi! My hubby is Army. My son BJ has EG.

Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis,

Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24)

[eosinophilic gastroenteritis] support

,

Hi my name is Judy and I am new to the list. I have EG. I really don't

understand all the technical things you mention but I do know how hard it is to

be a Mother taking care of an ill child. My heart goes out to you. I hope all

will be well. By the way, good luck with your move. My husband was in the

Marine Corps so I know a little about that too.

Judy

[Guest guest]

Thank you so much Joy and welcome to the list. I am starting to battle EG or

GERD.....not sure what yet.

[eosinophilic gastroenteritis] support

,

Hi my name is Judy and I am new to the list. I have EG. I really don't

understand all the technical things you mention but I do know how hard it is to

be a Mother taking care of an ill child. My heart goes out to you. I hope all

will be well. By the way, good luck with your move. My husband was in the

Marine Corps so I know a little about that too.

Judy

[Guest guest]

Hi Judy and welcome to the list! You will find a great deal of support here.

I welcome you particularly as another adult patient. I have EE and have been

frustrated by the ignorance of the adult GI community regarding eosinophilic

disease. All five of my sons have it too, and there seems to be a great deal of

information available in the pediatric community that the adult GIs are not

getting. My diagnosis was made only AFTER two of my kids were diagnosed after

over 30 years of severe symptoms (I was TPN dependent twice PRIOR to the

diagnosis).

Again, welcome. And OOOH-RAH..

(eos esophagitis/GT, former TPNr)

(Mom to 5 with EE/GTs; , , Korey, Kody (TPN), Killian

[eosinophilic gastroenteritis] support

,

Hi my name is Judy and I am new to the list. I have EG. I really don't

understand all the technical things you mention but I do know how hard it is to

be a Mother taking care of an ill child. My heart goes out to you. I hope all

will be well. By the way, good luck with your move. My husband was in the

Marine Corps so I know a little about that too.

Judy

[Guest guest]

I had read that but when I read about your sons emergency that went out of my

mind. I wish you luck. I think you are one step ahead of the game since your

son has been diagnosed. Thumbs down to the doctors who say this can't be an

inherited disease. Sure seems to me that digestive problems seem to run in

families. Fortunately they aren't all as serious as others.

How is your son. Did you get the problem taken care of?

Judy

[eosinophilic gastroenteritis] support

,

Hi my name is Judy and I am new to the list. I have EG. I really don't

understand all the technical things you mention but I do know how hard it is to

be a Mother taking care of an ill child. My heart goes out to you. I hope all

will be well. By the way, good luck with your move. My husband was in the

Marine Corps so I know a little about that too.

Judy

[Guest guest]

In a message dated 10/1/99 12:26:38 PM Eastern Daylight Time,

herrenfam@... writes:

<< And GI problems run in my family. My grandfather has reflux/hiatal

hernias, my mother has reflux and needs a fundo, I had reflux, and then

. >>

I also have severe reflux and have had hiateal hernias. I need to be scoped

real bad. I was so bad whenI was pregnant with the twins I was threatened

with a central line. I live in prilosec and zantac - BUT I have been so busy

with everything else that I can't seem to go to the GI. I will also tell you

my mom has severe GI problems, my brother too and all 3 of my kids had

reflux- obviously CLayton being the worst.

ARE WE SURE IT IS NOT IN THE AIR????

Love,

Sharon

[Guest guest]

, I have GERD and the doctors talked to me about getting tested for EG

after I have the baby due to the fact that I have had GI problems my whole life

and started getting ulcers at 13.

Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis,

Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24)

[eosinophilic gastroenteritis] support

,

Hi my name is Judy and I am new to the list. I have EG. I really don't

understand all the technical things you mention but I do know how hard it is to

be a Mother taking care of an ill child. My heart goes out to you. I hope all

will be well. By the way, good luck with your move. My husband was in the

Marine Corps so I know a little about that too.

Judy

[Guest guest]

Dawn,

What are you taking currently? It is going on 4 days with no food.....just a

little power aid. I can't stand to eat. It just hurts to bad. I hate the

feeling. I am only on prilocec and I am doubling the dose (but my doc doesn't

know).

[eosinophilic gastroenteritis] support

,

Hi my name is Judy and I am new to the list. I have EG. I really don't

understand all the technical things you mention but I do know how hard it is to

be a Mother taking care of an ill child. My heart goes out to you. I hope all

will be well. By the way, good luck with your move. My husband was in the

Marine Corps so I know a little about that too.

Judy

[Guest guest]

Judy,

Thank you for sharing your story.........yes, 30 years ago my little one would

be gone by now. My how technology changes. Boy am I thankful for TPN and all

this new stuff. Even back 10 years ago Spencer would be sitting in a hospital

and not at home b/c of the IV in his heart or for that matter even the G/J tube

he has.

I am dealing with having symptoms myself. Did yours just creep up on you or did

it come after a few kids. I started having problems after I had Spencer. I

know that this has to be a pass down disease. It just has too, there are too

many mothers out there that have E.G. of some sort or GERD in some fashion.

Welcome to the list again, and I am glad to have a mother on the list that is

suffering too. Up until now, I think it has just been Steph and I. Of course

Steph is much more ill than I......But our two son's Kody and Spencer and an

awful lot alike. I hope I don't end up with TPN at some point. I'm only

25........Steph, I have 11 years to get there.

Love,

[eosinophilic gastroenteritis] support

,

Hi my name is Judy and I am new to the list. I have EG. I really don't

understand all the technical things you mention but I do know how hard it is to

be a Mother taking care of an ill child. My heart goes out to you. I hope all

will be well. By the way, good luck with your move. My husband was in the

Marine Corps so I know a little about that too.

Judy

[Guest guest]

Judy,

Are you referring to the G/J tube coming out? If yes, we have decided to wait

until next week to deal with it. We put the G part back in to keep the hole

open. But he only get 15 cc's an hour for 16 hours of formula. Basically he

lives off of TPN.

Love,

[eosinophilic gastroenteritis] support

,

Hi my name is Judy and I am new to the list. I have EG. I really don't

understand all the technical things you mention but I do know how hard it is to

be a Mother taking care of an ill child. My heart goes out to you. I hope all

will be well. By the way, good luck with your move. My husband was in the

Marine Corps so I know a little about that too.

Judy

[Guest guest]

I have also dealt with GI problems throughout my life. I had reflux as a

infant, and it reached its peak when I was about 14. It was then that I was

hospitalized for 6 days due to a bad episode.

Of course, hindsight is always 20/20... the GI wonders if I had a motility

disorder as a child. I'm frankly embarrassed to say this - but my 6 day hospital

stay was for a huge intestinal obstruction/impaction. I kept telling my mother I

was sick for about 2 weeks, and then one day I started having pain so bad I

couldn't stand up at work (yes, I started working at 14 :-) and then started to

vomit neon green fluid. It was a pretty painful experience.

And GI problems run in my family. My grandfather has reflux/hiatal hernias, my

mother has reflux and needs a fundo, I had reflux, and then .

[Guest guest]

In a message dated 10/1/99 1:52:56 PM Eastern Daylight Time,

supplyguy@... writes:

<< I suffer with almost everything I eat even before I was pregnant, cramping

and diarrhea. >>

Dawn me too. I also have problems with the bowels - along the line of

irritable bowel - but who knows.

BTW - How are you feeling and how many weeks are you now?

Love,

Sharon

[Guest guest]

In a message dated 10/1/99 2:00:02 PM Eastern Daylight Time,

supplyguy@... writes:

<<

You know this is sure seeming like something is up.

I was just in the doctor yesterday who keeps worrying about me because no

matter how much I drink I can't stay hydrated. I am still gaining weight

but have been going into the hospital 2-3 times a week for IV fluids. I

drink constantly but if you went to the bathroom as much as I do it would be

really hard to stay hydrated too. >>

I was hospitalized for 8 weeks with the twins and on IV fluids. I could not

keep anything down - even water. I gained about 12 pounds the first 20 weeks

and then from 24-34 weeks I was so sick by the time I delivered I had gained

only 2 pounds - this is with twins - luckily at 34.5 weeks Clayton weighed

4.14 and Cole 5.5.

Love,

Sharon

[Guest guest]

Steph -

I don't have any significant problems now - just some mild heartburn, and the

occasional " heart attack " heartburn. I had hyperemesis when I was pregnant, and

spent a bit of time in and out of the hospital. Let me tell you, I really hate

throwing up!

As a child I had a lot of GI problems. Lots of reflux, lots of chest pain. I was

put on zantac when I was 11 or 12, and stopped taking it when I moved out of the

house. My family used to tell me I was just " under a lot of stress " and that's

why I had so many stomach aches and chest pain. Of course, 20 years ago they

didn't think kids could have reflux. Thank goodness that idea has changed!

The GI was interested in hearing my family history because he is hoping that my

history will repeat itself with ... that he will outgrow this in his

teen/early adult years.

We had an confirmation of sorts of 's diagnosis 2 weeks ago. No one would

give his zantac and propulsid in the hospital, because everyone kept

forgetting to write the order. So he didn't get it for about 36 hours. When we

got him home from the hospital, we had to give him liquid valium because he was

having muscle spasms and couldn't sleep. This stuff is so vile tasting that even

pure chocolate syrup couldn't make it take better. So we were trying to give it

to him, and he got upset and started choking on it. So we got him to cough it

up, and then he threw up his meal from earlier. He had eaten about 3 hours

before, and when he threw up, nothing had even begun to digest. The french fries

were still in whole pieces. They still had the potato peels on the end. So I

guess that quieted any doubts we might have had about " Is his DGE really that

slow? "

[Guest guest]

<>>

Sharon -

LOL! Maybe it is!

I know how it is - you need to go to the doctor yourself, but can't because

you go to too many doctor appts for your kids. So I hope that soon you will

get a break in the clouds, so to speak, and you can make an appointment.

It's all one can ask for sometimes!

I hope that things are going smoothly around your house!

Oh! PS: did I tell you that is going to get his cast off October

26th? Then he will have his hernia repair(s) November 3rd. My birthday is

Oct. 27th, so I think getting the cast off a week early is a good gift!

[Guest guest]

I was on Tagamet. The doctors wanted to do the test for H-Pylori but it was

right about the time that I found out I was pregnant so they wanted to wait. I

suffer with almost everything I eat even before I was pregnant, cramping and

diarrhea. It is worse now with being pregnant but as long as I am still gaining

weight they don't want me to take anything other than Tums which don't do

anything.

Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis,

Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24)

[eosinophilic gastroenteritis] support

,

Hi my name is Judy and I am new to the list. I have EG. I really don't

understand all the technical things you mention but I do know how hard it is to

be a Mother taking care of an ill child. My heart goes out to you. I hope all

will be well. By the way, good luck with your move. My husband was in the

Marine Corps so I know a little about that too.

Judy

[Guest guest]

You know this is sure seeming like something is up.

I was just in the doctor yesterday who keeps worrying about me because no

matter how much I drink I can't stay hydrated. I am still gaining weight

but have been going into the hospital 2-3 times a week for IV fluids. I

drink constantly but if you went to the bathroom as much as I do it would be

really hard to stay hydrated too.

Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic

gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due

December 24)

Re: [eosinophilic gastroenteritis] support

> From: SDidinsky@...

>

> In a message dated 10/1/99 12:26:38 PM Eastern Daylight Time,

> herrenfam@... writes:

>

> << And GI problems run in my family. My grandfather has reflux/hiatal

> hernias, my mother has reflux and needs a fundo, I had reflux, and then

> . >>

>

> I also have severe reflux and have had hiateal hernias. I need to be

scoped

> real bad. I was so bad whenI was pregnant with the twins I was threatened

> with a central line. I live in prilosec and zantac - BUT I have been so

busy

> with everything else that I can't seem to go to the GI. I will also tell

you

> my mom has severe GI problems, my brother too and all 3 of my kids had

> reflux- obviously CLayton being the worst.

>

> ARE WE SURE IT IS NOT IN THE AIR????

>

> Love,

> Sharon

>

>

[Guest guest]

Wow . That is significant. What problems/diagnoses do you have now?

SOMETHING is going on here.

Steph.

Re: [eosinophilic gastroenteritis] support

ÿþ

I have also dealt with GI problems throughout my life. I had reflux as a

infant, and it reached its peak when I was about 14. It was then that I was

hospitalized for 6 days due to a bad episode.

Of course, hindsight is always 20/20... the GI wonders if I had a motility

disorder as a child. I'm frankly embarrassed to say this - but my 6 day hospital

stay was for a huge intestinal obstruction/impaction. I kept telling my mother I

was sick for about 2 weeks, and then one day I started having pain so bad I

couldn't stand up at work (yes, I started working at 14 :-) and then started to

vomit neon green fluid. It was a pretty painful experience.

And GI problems run in my family. My grandfather has reflux/hiatal hernias,

my mother has reflux and needs a fundo, I had reflux, and then .

[Guest guest]

This sure seems to run in families............

Re: [eosinophilic gastroenteritis] support

I have also dealt with GI problems throughout my life. I had reflux as a

infant, and it reached its peak when I was about 14. It was then that I was

hospitalized for 6 days due to a bad episode.

Of course, hindsight is always 20/20... the GI wonders if I had a motility

disorder as a child. I'm frankly embarrassed to say this - but my 6 day hospital

stay was for a huge intestinal obstruction/impaction. I kept telling my mother I

was sick for about 2 weeks, and then one day I started having pain so bad I

couldn't stand up at work (yes, I started working at 14 :-) and then started to

vomit neon green fluid. It was a pretty painful experience.

And GI problems run in my family. My grandfather has reflux/hiatal hernias, my

mother has reflux and needs a fundo, I had reflux, and then .

[Guest guest]

Judy my twins were - Clayton 4.14 and Cole 5.5 born at 34.5 weeks.

I agree this disease is probably not as rare - BUT a lot of GIs are probably

not aware of it, especially with adults.

Love,

Sharon

[Guest guest]

Hi ,

Mine came on all of a sudden. On my 50th birthday went out to eat and by the

time we got home I was in pain. For the nest ten days the pain just escalated

until I was bent over a lot of the time. I had lots of blood test and the eos

were rising. I finally had an ultrasound. The illeo secal area was so enlarged

that they thought I had cancer and appendicitis. I was admitted through the

emergency room straight from ultrasound. I was fortunate that the surgeon was

not knife happy. After a couple days they called in the GI and he did the

colonoscopy which gave the diagnosis. When he went in the inside looked normal

with no swelling, but the bio was positive. The form I have is submucosal so

causes swelling to the outside.

Being in the hospital on IVs helped calm the pain. Iwas also getting a lot of

rest and not dealing with stress.

The next major attack came after eating at that same restaurant again. I don't

go there anymore. Too risky. I don't know if it is the food or some other

product they use. I have symptoms not related to that restaurant too but have

been pretty well controlled with the Gastrochrom.

Good Luck

Judy

[eosinophilic gastroenteritis] support

,

Hi my name is Judy and I am new to the list. I have EG. I really don't

understand all the technical things you mention but I do know how hard it is to

be a Mother taking care of an ill child. My heart goes out to you. I hope all

will be well. By the way, good luck with your move. My husband was in the

Marine Corps so I know a little about that too.

Judy