Pancreatitis

[Guest guest]

Dear Tara,

What an impressive young lady you are! Your knowledge & ability to

express yourself is incredible. I'm sorry that you're so young and have to

endure such problems. However, I think that life throws curves at us every

day, some are just wider & longer than others. It's really up to the

individual how they handle it & how they view the scenery as the drive

through the curve. I just read a great story in Reader's Digest about a

young gal who suffered through several bouts of cancer & eventually

succumbed to it. Her mother wrote that after she had " beat " it the first

time around, she became saddened because her friends just " didn't get

it--that their worst days were when a boy didn't talk to them,e tc. " You

sound sooo very well " put together " and perhaps have an appreciation for

life that others may never have. Although we all suffer from this disease &

its complications, we still are alive--and that in itself is a gift.

I wanted to let you know that I can't tolerate meat either so it's not

your imagination. I also agree with you that drs can really do very little

for you other than tests & write prescriptions. Right now, I'm more

concerned with nutrition more than anything. I don't have the horrendous

pain that some do & have been able to tolerate most bouts with Tylenol or

Tylenol 3 ( & that only sparingly). I started a yoga class but had to take a

break because I was just too exhausted to go. I'm gaining some strength

(after my last ERCP & placement of stents) & hope to continue with the class

this Spring. The mind is such a powerful thing & can only be enhanced by a

strong, positive spirit. Tara, it sounds to me that you have all of the

above & more. There are many knowledgeable people within this group & they

can provide tremendous support. When you go to your dr, be specific &

STRONG when you ask questions & it's definitely okay to be demanding! Good

luck, Tara.

Cheryl

Pancreatitis

>From: ShineGrl19@...

>

>Hello to everyone who is on this onelist. I know we are all on this list

>because in some way we have one thing in common, Pancreatitis we all know

>someone or we ourselves suffer from it. Well to tell all of you a bit about

>me, as I am sure this is the first time you are hearing anything from me. I

>just joined this list a few days ago after becoming curious about this

>disease that I am suffering from. I am 15 years old, and I was diagnosed

with

>pancreatitis seven years ago in 1993 when I was 8. I went into the hospital

>with horrible stomache pains and I was throwing up violently, at the time

the

>doctors had no idea what it was. After a few days of being in the hospital

>they finally figured out that it was pancreatitis. A few days after that I

>was sent home and told to be on a 2 gram of fat diet for a few months. A

year

>and a half later I ended back up in the hospital, at this time they didn't

>know much more about pancreatits so I spent the few days in the hospital

>again and then went back home and told to be on the same diet. I am/was one

>of three children in California with pancreatitis, and the other two are

>siblings and their's is classified hereditary. At the time they said mine

>couldn't be hereditary because only my grandmother had it and that link

>wasn't close enough, after doing my own research I've realized that 20% of

>the people with pancreatitis don't " express " it. This was enough proof to

me

>to show that I do have hereditary pancreatitis, and that my mother is

>carrying the gene however she just doesn't express it.

> Well as for my current condition, in the past few years and more

>currently months I have been completely unable to eat meat, because it was

>just too painful. At first I did think that it was just my stomache acting

>crazy, but after reading more and more about pancreatitis I have realized

>that it is probably the pancreatitis that is making the digestion of meat

so

>painful. I have also noticed that anything that is " complex " or has protein

>in it is also painful for me to digest. Although I do not throw anything

up,

>I do get nautious and feel very weak sometimes. Since these symptoms have

>just come up in the past few months I haven't seen a doctor yet, and I

don't

>see that it would make a whole lot of difference considering the doctors

out

>here in California don't know much about pancreatitis besides the

alcoholic's

>form. I am however going to go see a doctor this week or next, and see what

>they do recommend, and hopefully I can get some help. After hearing what

all

>of you have gone through with the doctors I hope that my experience with

them

>isn't quite so bad. Well I am sorry this letter was so long, and I hope

that

>all of you are doing well. if you have related with some of my symptoms

could

>you let me know? Thanks so much!

> Tara

>

>---------------------------

[Guest guest]

welcome Tara!! Jump right in!! The people here are very knowledgeable and

compassionate...it's a great place!! Ask as many questions as you like...Lynn

:0)

" Lee, Cheryl #2 " wrote:

From: organize@... (Lee, Cheryl #2)

Dear Tara,

What an impressive young lady you are! Your knowledge & ability to

express yourself is incredible. I'm sorry that you're so young and have to

endure such problems. However, I think that life throws curves at us every

day, some are just wider & longer than others. It's really up to the

individual how they handle it & how they view the scenery as the drive

through the curve. I just read a great story in Reader's Digest about a

young gal who suffered through several bouts of cancer & eventually

succumbed to it. Her mother wrote that after she had " beat " it the first

time around, she became saddened because her friends just " didn't get

it--that their worst days were when a boy didn't talk to them,e tc. " You

sound sooo very well " put together " and perhaps have an appreciation for

life that others may never have. Although we all suffer from this disease &

its complications, we still are alive--and that in itself is a gift.

I wanted to let you know that I can't tolerate meat either so it's not

your imagination. I also agree with you that drs can really do very little

for you other than tests & write prescriptions. Right now, I'm more

concerned with nutrition more than anything. I don't have the horrendous

pain that some do & have been able to tolerate most bouts with Tylenol or

Tylenol 3 ( & that only sparingly). I started a yoga class but had to take a

break because I was just too exhausted to go. I'm gaining some strength

(after my last ERCP & placement of stents) & hope to continue with the class

this Spring. The mind is such a powerful thing & can only be enhanced by a

strong, positive spirit. Tara, it sounds to me that you have all of the

above & more. There are many knowledgeable people within this group & they

can provide tremendous support. When you go to your dr, be specific &

STRONG when you ask questions & it's definitely okay to be demanding! Good

luck, Tara.

Cheryl

Pancreatitis

>From: ShineGrl19@...

>

>Hello to everyone who is on this onelist. I know we are all on this list

>because in some way we have one thing in common, Pancreatitis we all know

>someone or we ourselves suffer from it. Well to tell all of you a bit about

>me, as I am sure this is the first time you are hearing anything from me. I

>just joined this list a few days ago after becoming curious about this

>disease that I am suffering from. I am 15 years old, and I was diagnosed

with

>pancreatitis seven years ago in 1993 when I was 8. I went into the hospital

>with horrible stomache pains and I was throwing up violently, at the time

the

>doctors had no idea what it was. After a few days of being in the hospital

>they finally figured out that it was pancreatitis. A few days after that I

>was sent home and told to be on a 2 gram of fat diet for a few months. A

year

>and a half later I ended back up in the hospital, at this time they didn't

>know much more about pancreatits so I spent the few days in the hospital

>again and then went back home and told to be on the same diet. I am/was one

>of three children in California with pancreatitis, and the other two are

>siblings and their's is classified hereditary. At the time they said mine

>couldn't be hereditary because only my grandmother had it and that link

>wasn't close enough, after doing my own research I've realized that 20% of

>the people with pancreatitis don't " express " it. This was enough proof to

me

>to show that I do have hereditary pancreatitis, and that my mother is

>carrying the gene however she just doesn't express it.

> Well as for my current condition, in the past few years and more

>currently months I have been completely unable to eat meat, because it was

>just too painful. At first I did think that it was just my stomache acting

>crazy, but after reading more and more about pancreatitis I have realized

>that it is probably the pancreatitis that is making the digestion of meat

so

>painful. I have also noticed that anything that is " complex " or has protein

>in it is also painful for me to digest. Although I do not throw anything

up,

>I do get nautious and feel very weak sometimes. Since these symptoms have

>just come up in the past few months I haven't seen a doctor yet, and I

don't

>see that it would make a whole lot of difference considering the doctors

out

>here in California don't know much about pancreatitis besides the

alcoholic's

>form. I am however going to go see a doctor this week or next, and see what

>they do recommend, and hopefully I can get some help. After hearing what

all

>of you have gone through with the doctors I hope that my experience with

them

>isn't quite so bad. Well I am sorry this letter was so long, and I hope

that

>all of you are doing well. if you have related with some of my symptoms

could

>you let me know? Thanks so much!

> Tara

>

>---------------------------

[Guest guest]

so the ensure is bad because of the sugar and the other will aggravate the

pancreatitis because of the high fat content?? glad you are feeling somewhat

better...have you tried to get disablility?? i cannot believe they would deny

you disability!!! hang in there, Lynn :0)

ACastenell@... wrote:

From: ACastenell@...

Lynn,

When I stated that I eat only one or two meals a week I did not include the 2

to 4 cans of Ensure I drink daily. This is my main source of Protein and

other nutrients. Now that I have been diagnosed with Diabetes, I must now

quit drinking Ensure due to the high sugar content and begin drinking

Glucernamine (may be misspelled). Unfortunately, this product is loaded with

fat (11 grams) so therefore, I am left without any replacement for my

inability to eat. That brings me back to my drinking 2-4 cans of Ensure

daily. This will continue until they can find another source of nutrition

for me.

Andre'

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Lynn :0)

" The kindness planned for tomorrow doesn't count today. "

---------------------------------

[Guest guest]

In a message dated 3/20/00 6:32:26 PM Central Standard Time,

cst1973352@... writes:

<< One of them is with the University of South Carolina

who has Dr. Cotton, he is considered the leading authority on

pancreatitis. >>

thanks jennifer for passing that along!

[Guest guest]

There is another good site for pancreatitis, I found it under the

hereditary pancreatitis search, it is www.pancreas.org. It is

sponsored by the University of Pittsburgh with Dr. Whitcomb.

They now have pictures of an ercp and CT scan of the pancreas, it

also has some great links with other universities throughout the US

on pancreatitis. One of them is with the University of South Carolina

who has Dr. Cotton, he is considered the leading authority on

pancreatitis.

[Guest guest]

The University is in ton SC, and the doctor is Cotton,MD. He is

originally from England, practiced and taught at Duke University for years

and moved to ton about 3 years ago.