Re: ASHLEY-Adult onset

[Guest guest]

,

How could you possibly know what I'm going thru & where I have been? Have

you seen me? Do you know how horribly ill I look? Are you aware that I look

totally like a walking corpse? Were you there the day the twinkle left my

eyes & they became all sunken & dark? NO!!!!!! to all of these questions is

certainly your answer. You should follow your own advice-why don't you get a

grip? Do you suppose that the hospice patient feels as though they are going

to continue to life a long life? I don't think so. The very fact that I

have had to quit my job due to my multiple medical problems should be a clue

to you and everyone else. I don't mean to be rude or critical-but geez

!!!!!! I'm on death roe here & even people with my very same condition don't

get it. I guess all of this communication is quite worthless then. This is

supposed to be a support group for all who have this illness in common, not a

buck up & take it on the chin group. I await your response. I would love to

send you a picture of my ribs sticking out or my boney butt or my sunken

eyes, but it would certainly be a waste of good kodak paper, as you probably

wouldn't believe your own eyes anyway. Just exactly what miracle is gonna

come & save me from all of this?

Take Care U,

in Iowa

(Camp878904)

[Guest guest]

Attitude has a lot to do with how we handle life. Yes, it is reasonable to

try and be positive when things are not going well. But you all know it is

impossible to be positive all the time - heck, if that was possible, we

wouldn't even need support groups like this! Reality is, we are all social

creatures and as such, I think we should make an effort to at least try and

understand things from 's perspective.

I think I understand somewhat where is coming from in terms of her

situation. I too have Crohn's Disease (a type of inflammatory bowel

disease), and it in combination with EG may be what has made the condition

respond differently in her body than most others with EG/EE. The experts

say Crohn's doesn't kill either, but it's complications CAN potentially

cause death - especially if misdiagnosed (or ignored) & therefore not

properly treated. I am inclined to think that there could be some

complication to EG that could potentially be fatal as well - say for

instance, avoiding food for too long without TPN, or an untreated ruptured

bowel due to severe inflammation; it can happen with Crohn's so I don't see

why it couldn't with a severe case of EG. I also remember reading somewhere

on the internet in all my searches for information on EG that there was one

case where EG spontaneously went body-wide, or a case of body-wide

eosinophilia became localized in the gut...I don't remember which it was; it

might have even been one of each (i.e., 2 cases, one of each). My husband

says in his EG article from a medical text book it says that the eosinophils

can attack the heart and not just the GI tract. Doctors don't know the full

implications of malabsorption either (which is always a concern with

digestive disorders), so there are many unknowns with EG/EE. I'm not trying

to scare you all - just trying to put things in perspective.

I also know what it is like to feel like I only had a short time to live -

for me, it was terrifying, overwhelming, and oddly calming all at the same

time. My own body has given me symptoms and problems that even now I

struggle with at times, such as severe lack of appetite due to nausea (later

on I figured it must've been the Crohn's but doctors I saw at the time were

baffled & clueless). I've come close to being on my death bed several times

for various other reasons, too.

I know, too, what it is like to have doctors not listen or think all our

problems are " in our head. " When trying to get my RSD diagnosis (and

treatment), it took over 2 years to even find a doctor who would actually

really listen to what I told them about the pain and symptoms I was

experiencing. I discovered the condition (RSD) on my own by researching on

the internet and suspected that it was what was wrong with me, but then it

was not easy to find someone in the medical field who would acknowledge

RSD's existence, or acknowledge that I could even have the condition, or

recognize that the condition was real and not an imaginary pain syndrome. I

found out later that the first doctor I saw right after the triggering

injury suspected RSD but never told me that's what he suspected! Doctors

don't know everything, and even the ones who do know a lot about a

particular illness are not omniscient. It is unfortunate that some doctors

like to think they are and treat us patients like we are stupid or incapable

of understanding what is going on in our own body.

Just my two cents...

-----

,

I'm sorry you are feeling so bad and wish I could somehow ease your mind

about what was going on for you - unfortunately I don't know what to say or

how to help or even if I can. I do recognize that you seem to have made

some sort of peace about what is going on and I applaud you for your

strength. It takes a lot of courage to face something like this and be able

to make peace with it. I hope and pray your trip to Minnesota proves

fruitful and the doctors are able to provide proper treatment for whatever

is going on; if not, well I hope and pray you have as comfortable a passing

as possible if that is what is to be.

-Joy

(Crohn's, FMS, RSD & many food/other allergies; husband has EG, Asthma

& Allergies)

[Guest guest]

Attitude has a lot to do with how we handle life. Yes, it is reasonable to

try and be positive when things are not going well. But you all know it is

impossible to be positive all the time - heck, if that was possible, we

wouldn't even need support groups like this! Reality is, we are all social

creatures and as such, I think we should make an effort to at least try and

understand things from 's perspective.

I think I understand somewhat where is coming from in terms of her

situation. I too have Crohn's Disease (a type of inflammatory bowel

disease), and it in combination with EG may be what has made the condition

respond differently in her body than most others with EG/EE. The experts

say Crohn's doesn't kill either, but it's complications CAN potentially

cause death - especially if misdiagnosed (or ignored) & therefore not

properly treated. I am inclined to think that there could be some

complication to EG that could potentially be fatal as well - say for

instance, avoiding food for too long without TPN, or an untreated ruptured

bowel due to severe inflammation; it can happen with Crohn's so I don't see

why it couldn't with a severe case of EG. I also remember reading somewhere

on the internet in all my searches for information on EG that there was one

case where EG spontaneously went body-wide, or a case of body-wide

eosinophilia became localized in the gut...I don't remember which it was; it

might have even been one of each (i.e., 2 cases, one of each). My husband

says in his EG article from a medical text book it says that the eosinophils

can attack the heart and not just the GI tract. Doctors don't know the full

implications of malabsorption either (which is always a concern with

digestive disorders), so there are many unknowns with EG/EE. I'm not trying

to scare you all - just trying to put things in perspective.

I also know what it is like to feel like I only had a short time to live -

for me, it was terrifying, overwhelming, and oddly calming all at the same

time. My own body has given me symptoms and problems that even now I

struggle with at times, such as severe lack of appetite due to nausea (later

on I figured it must've been the Crohn's but doctors I saw at the time were

baffled & clueless). I've come close to being on my death bed several times

for various other reasons, too.

I know, too, what it is like to have doctors not listen or think all our

problems are " in our head. " When trying to get my RSD diagnosis (and

treatment), it took over 2 years to even find a doctor who would actually

really listen to what I told them about the pain and symptoms I was

experiencing. I discovered the condition (RSD) on my own by researching on

the internet and suspected that it was what was wrong with me, but then it

was not easy to find someone in the medical field who would acknowledge

RSD's existence, or acknowledge that I could even have the condition, or

recognize that the condition was real and not an imaginary pain syndrome. I

found out later that the first doctor I saw right after the triggering

injury suspected RSD but never told me that's what he suspected! Doctors

don't know everything, and even the ones who do know a lot about a

particular illness are not omniscient. It is unfortunate that some doctors

like to think they are and treat us patients like we are stupid or incapable

of understanding what is going on in our own body.

Just my two cents...

-----

,

I'm sorry you are feeling so bad and wish I could somehow ease your mind

about what was going on for you - unfortunately I don't know what to say or

how to help or even if I can. I do recognize that you seem to have made

some sort of peace about what is going on and I applaud you for your

strength. It takes a lot of courage to face something like this and be able

to make peace with it. I hope and pray your trip to Minnesota proves

fruitful and the doctors are able to provide proper treatment for whatever

is going on; if not, well I hope and pray you have as comfortable a passing

as possible if that is what is to be.

-Joy

(Crohn's, FMS, RSD & many food/other allergies; husband has EG, Asthma

& Allergies)

[Guest guest]

Attitude has a lot to do with how we handle life. Yes, it is reasonable to

try and be positive when things are not going well. But you all know it is

impossible to be positive all the time - heck, if that was possible, we

wouldn't even need support groups like this! Reality is, we are all social

creatures and as such, I think we should make an effort to at least try and

understand things from 's perspective.

I think I understand somewhat where is coming from in terms of her

situation. I too have Crohn's Disease (a type of inflammatory bowel

disease), and it in combination with EG may be what has made the condition

respond differently in her body than most others with EG/EE. The experts

say Crohn's doesn't kill either, but it's complications CAN potentially

cause death - especially if misdiagnosed (or ignored) & therefore not

properly treated. I am inclined to think that there could be some

complication to EG that could potentially be fatal as well - say for

instance, avoiding food for too long without TPN, or an untreated ruptured

bowel due to severe inflammation; it can happen with Crohn's so I don't see

why it couldn't with a severe case of EG. I also remember reading somewhere

on the internet in all my searches for information on EG that there was one

case where EG spontaneously went body-wide, or a case of body-wide

eosinophilia became localized in the gut...I don't remember which it was; it

might have even been one of each (i.e., 2 cases, one of each). My husband

says in his EG article from a medical text book it says that the eosinophils

can attack the heart and not just the GI tract. Doctors don't know the full

implications of malabsorption either (which is always a concern with

digestive disorders), so there are many unknowns with EG/EE. I'm not trying

to scare you all - just trying to put things in perspective.

I also know what it is like to feel like I only had a short time to live -

for me, it was terrifying, overwhelming, and oddly calming all at the same

time. My own body has given me symptoms and problems that even now I

struggle with at times, such as severe lack of appetite due to nausea (later

on I figured it must've been the Crohn's but doctors I saw at the time were

baffled & clueless). I've come close to being on my death bed several times

for various other reasons, too.

I know, too, what it is like to have doctors not listen or think all our

problems are " in our head. " When trying to get my RSD diagnosis (and

treatment), it took over 2 years to even find a doctor who would actually

really listen to what I told them about the pain and symptoms I was

experiencing. I discovered the condition (RSD) on my own by researching on

the internet and suspected that it was what was wrong with me, but then it

was not easy to find someone in the medical field who would acknowledge

RSD's existence, or acknowledge that I could even have the condition, or

recognize that the condition was real and not an imaginary pain syndrome. I

found out later that the first doctor I saw right after the triggering

injury suspected RSD but never told me that's what he suspected! Doctors

don't know everything, and even the ones who do know a lot about a

particular illness are not omniscient. It is unfortunate that some doctors

like to think they are and treat us patients like we are stupid or incapable

of understanding what is going on in our own body.

Just my two cents...

-----

,

I'm sorry you are feeling so bad and wish I could somehow ease your mind

about what was going on for you - unfortunately I don't know what to say or

how to help or even if I can. I do recognize that you seem to have made

some sort of peace about what is going on and I applaud you for your

strength. It takes a lot of courage to face something like this and be able

to make peace with it. I hope and pray your trip to Minnesota proves

fruitful and the doctors are able to provide proper treatment for whatever

is going on; if not, well I hope and pray you have as comfortable a passing

as possible if that is what is to be.

-Joy

(Crohn's, FMS, RSD & many food/other allergies; husband has EG, Asthma

& Allergies)

[Guest guest]

I am absolutely flabbergasted that you would respond to in this

manner. She is a young girl who has had EG for many years. Yes she has

suffered as all who have this disease have. We do not have a FATAL

DISEASE!!!!!!! WE ARE NOT DYING!!!!!!

EE, EG, and EC are not fatal. I have only read of two cases that were fatal

and that was because they were found when surgery was performed and it was

50 years ago. I don't know what information you are reading but you might

want to read the last web site I sent. This is a TREATABLE disease. If you

are dying then you have something else. You are not dying from EE, EG, or

EC.

I think members have shown empathy for you even though we know our disease

is not fatal. I know I am not prepared to die and I don't know how to

support someone who thinks they are. I don't walk in your shoes. I am

alive and will not die from this disease. Something else yes but not EG.

Sometimes the pain is so bad you think you can't go on, but there are

medications that can help. Not eating helps too.

I am one of the lucky adults who was Diagnosed without years of pain, but

many people who have this live in pain for years before getting treatment

and they don't die. When they get a diagnosis they do what we are doing,

learn to live with it and get it under control. SO YES CARRIE I AGREE WITH

ASHLEY " GET A GRIP " AND GET THE RIGHT DIAGNOSIS. EG IS NOT TERMINAL.

JUDY (ADULT GE)

[Guest guest]

Dear ;

Yes this is a support group and yes we do a fair bit of bitching. All I

have seen from you so far is a very bitter person thats given up and feels

sorry for herself. Sorry, but there are alot of adults on this list and

parents as I, that have the willpower to live no matter what. I think if

you stopped being so damm critical at everyone including the medical

profession you might see things differently. Don't tell me they are all

incompetent. It seems you allready made up your mind before you walk into

their offices.

Yes you have a rare combination of what is going on with your body. So do

alot of us on the list. This disease with my son and other problems has

made it impossilbe for him ever to get of IV's. But he loves and enjoys

life and yes he has looked like a refugee at times with nothing on him. But

I admire his will to live. We are here to support. As much as I feel for

you and the hell you are going through, you are venting you misery at the

wrong people.

beatrix

[Guest guest]

I do not doubt the way you look. I went from being

5'1''and 120 lbs to 5'1'' and 73 lbs. You talk about

skinny. I just think you need to get some mental help.

I went to a wonderful psychologist who almost helped

me more than the doctor. You are still on the computer

typing everyday. When I was sick I could barely open

my eyes.

As to the rest of the group,

I apologize for starting such a stir up. But hearing

what in Iowa is saying only makes me depressed

and think back. I get very angry when other EG

patients let this disease control them. I did let it

control me until I took control of it. Sadly, that was

after I had to drop out of high school and get my GED.

Today, I am a sophomore in college.

Group: Thanks for your support

: Don't get yourself so worked up over the small

stuff. If you really are going to die I am sure there

arte more important things you should be doing.

=====

[Guest guest]

Joy,

You make several good points. I think what a few of us are trying to do is for

is to convince her to not just " give up and die " . No one is saying her

symptoms are not real, just that if they are that severe, she needs to keep

looking, working with her doctors and find the correct diagnosis. Who's to say

that a good doctor could not find out what the problem is, correctly diagnose it

and ease her suffering?

I've been on that death bed a few times two, directly as a result of my

then-undiagnosed eos esophag, which led to TPN and then I developed a cellulitis

at the Central Line site and became septic. But I KEPT looking, I kept working

with my doctors and now I have a completely different outlook on life, as well

as a livable treatment and a reasonable life expectancy. I think what Judy has

said was that EG was not multi-systemic but OTHER diseases can be and she should

search out and make sure those other diseases are not what is going on.

We're all here to provide support for one another. But sometimes support is more

than just a pat on the back, but a gentle nudge in another direction.

My 3 cents.

(eos esophagitis/GT, former TPNr)

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

______________________________________________

" We thought we would teach our children about the world but ended up

teaching the world about our children " . http://www.c4isr.com/harlow

[Guest guest]

Well said Beatrix - could not have said it beeter myself.

Sharon

[Guest guest]

Hello everyone... I contacted the list about a month or so ago to see if my

son had EOS. He was biopsied & does not have it. He does have food

allergies, gerd, dysmotility, etc. He is on Pediatric Vivonex & doing well

on it. I know from the list that some of you were also on Pediatric

Vivonex. My son is losing his insurance in December due to the fact that my

husband changed jobs trying to better ourselves & now that he gets paid

every 2 weeks & is at a higher paying job, SSI is telling us that we will

not receive a check for the month of December. That part is acceptable.

What is not acceptable is that because of the extra check that he will

receive in December is not even eligible for his state insurance

which pays for all of his medical supplies & formula. I am currently

writing letters to my congressman & gov. to see what they can do to help. I

would appreciate it greatly if anyone who could donate formula that IS NO

LONGER BEING USED. I would gladly pay for shipping & stuff. I don't mean

to be forward or pushy so please don't be offended at my asking. I am just

trying to get through December until a solution can be figured out. We have

been advised by SSI attorneys that we have contacted to either file legal

separation, get a divorce, or that my husband can take a pay cut & we can

file medical bankruptcy. What great options!!!! LOL If anyone can give me

company contacts or groups that I could contact about the formula, I would

be so thankful. Thank you for your help even though I'm not really apart of

the group. Rhonda, mom to 2, & Haven 5

Re: [eosinophilic gastroenteritis] ASHLEY-Adult onset

>From: SDidinsky@...

>

>Well said Beatrix - could not have said it beeter myself.

>

>Sharon

>

>>