New to the group

[Guest guest]

Hi , I just wanted you to know I am 30 years older than you and

I have lost my friends too, so it happens at all ages, I guess this

could be called the lonely illness. Audie

> Hi,

>

> my name is tracy and im another newbee to the group

>

> Age range: I'm 24 years old

>

>

> Male/female: I'm a female

>

>

> What are the symptoms? : pain mostly in my shoulders, lower back

and legs, have occasional " brain fog " , insomnia and bad short term

memory. Also have gained a lot of weight and am depressed. Hardest

symptom to cope with was losing all my friends.

>

>

> Has you illness been diagnosed? : I was diagnosed a year and a

half ago.

>

>

>

> How long did you suffer before you got help?: I lived with it a

year before I was diagnosed.

>

>

> Is there a time that you can remember when it started?: About 2

and a half years ago

>

>

> Some of us have found lack of exercise we are overweight. Have you

found this to be a problem also?: Yes, I have gained a lot of weight.

>

>

> Are you on disability? : No

>

> If you are any pointers for others trying to get on disability?:

>

>

> What have you found that helps ease the pain, warm baths,

medications etc.?: I was given trazadone to help sleep, but I havent

found anything for the pain.

>

>

> Do you have sleep problems? How do you deal with it?

> Yes, I take trazadone, and sometimes kava kava root (it helps

relax your muscles and aids in sleep)

>

>

> Do you have family that understands your illness?: My mother and

fiance have been a tremendous support.

>

>

> Some have found certain foods causes problems with CFS or Fibro,

have you?: I find dairy foods make ibs worse.

>

>

> What type of Doctor have you found that has helped you the most?:

I havent.

>

>

> I look forward to being part of this group. Though I have

supportive family, it's been very difficult not having any one who

truly understand. Fibromyalgia has made me a ghost of the person I

used to be.

> Thank you

>

>

>

>

>

>

[Guest guest]

Goodmorning everyone. Thank you for you intro it helped me with mine

)))))))

My name is Corry and I have just joined this group.

Age range: I am in my 60's

Male/female: I'm a female

What are the symptoms? My whole body aches, identified 17 tender points,

lots of headaches, severe tiredness, my days vary as much as the weather.

Has you illness been diagnosed? : Diagnosis was almost 20 years ago, at that

time docters were very reluctant to tell me what was wrong.

How long did you suffer before you got help?: It was not that I did not try

to get help, but no-one seemed to know what to do with all the problems I

was having. It was treated each symptom seperately.... until I had to inform

the doctors to put it all together and see what you get. ) The puzzle was

solved

Is there a time that you can remember when it started?: Oh yes!!!! When the

stress level went through the roof, a major operation, the death of my

parents, my divorce, and a supervisor at work who hated me with a passion.

Some of us have found lack of exercise we are overweight. Have you found

this to be a problem also?: Not really as I have never been a skinny minny,

but I eat very healthy foods and just limited the portions somewhat.

Are you on disability? : I was until I retired

If you are any pointers for others trying to get on disability?: At first I

was refused, but I would not take no for an answer. I think they gave it to

me just to get rid of my pestering them.

What have you found that helps ease the pain, warm baths, medications etc.?:

A lot of laughter, the love of my partner, tai-chi and yoga, above all no

white sugar, rice, flour. No red meat.... I found diet has a lot to do with

it all.

Do you have sleep problems? How do you deal with it? In the beginning I

did, but soon got myself off medication for sleeping. I practice meditation

and at night before sleeping did breathing exercises following my breath in

and out. Soon I found myself asleep. For the last 10 years I have practiced

this and found it worked for me.

Do you have family that understands your illness?: I was alone, but now have

a wonderful partner, my children all do, but my friends did not. The phrase

" You look so healthy still rings in my ears " However friends can be replaced

so I now have a small but wonderful circle of people who know truly what it

means to love unconditionally, on outings they suit themselves to my agenda

and capabilities ))

Some have found certain foods causes problems with CFS or Fibro, have you?:

Yes and I changed my food intake totally.

What type of Doctor have you found that has helped you the most?: There does

not seem to be any, so I am now my own doctor, afterall I know my body

better than they do. But then I am of a holistic nature.

I still believe that all of this is reversable, and have come back from

totally incapacitated to a more productive life. I keep myself busy with the

things I can do and do not worry about that which I cannot do. Life is too

short to let it pass unnoticed. I was hoping to bring the gift of hope to

this list, to laugh with you all, to commisserate if needed. To bring love

and friendship.

namaste

Reverend Corry

ps if any of you like to visit my websites about holistic care, fibromyalgia

and more that may be of help please do so. There may be just a point or two

that is of help to someone.

http://www.corrystuart.com

http://www.corrystuart.com/001journal/today.html

http://www.earthmelodies.com

[Guest guest]

Hi ,

Welcome to the group. I hope you find it as comforting and beneficial

as I continue to do so. We're all here to help each other. And I

totally understand about feeling you've become a ghost of your former

self. This is not fun. But with the help of this group, I've gone

from denial to anger. It's a step in the right direction. Maybe if I

can get enough doctor help, I'll actually make it all the way to

acceptance. Anyway, just wanted to say welcome, and I hope you get as

much out of this group as I do.

Take care,

[Guest guest]

Welcome Corry,

You sound as if you've done a good job of coming to terms with your

fibro. Teach me the secret! :-) At the age of 17, after years of

serious IBS issues, I too gave up red meat. And what a differnece it

made. Most of the time I don't even feel like I have the IBS anymore.

I prefer to callit food allergies anyway. If something upsets my

stomach, I eliminate it from my diet for 30 days, and then slowly

reintroduce it to see what happens. Sometimes certain things in

moderation are fine. I also just recently switched from white sugar

to raw sugar. I haven't noticed any benefits as of yet. Anyway,

welcome to the group.

Take care everyone,

[Guest guest]

, welcome to our group. It is a very good group of people. It is also

loving, caring and supportive. Ask a question and you will get an answer.

Actually more than one. There is a lot of good information that comes from

the members of this group. Also if you feel like venting, go ahead, we all

do at one time or another.

Take care,

Irene

Books may well be the only true magic

Alice Hoffman

[Guest guest]

Hi,

I'm new as well.

cheers,

Tim

> Hi,

>

> my name is tracy and im another newbee to the group

>

> Age range: I'm 24 years old

>

>

> Male/female: I'm a female

>

>

> What are the symptoms? : pain mostly in my shoulders, lower back

and legs, have occasional " brain fog " , insomnia and bad short term

memory. Also have gained a lot of weight and am depressed. Hardest

symptom to cope with was losing all my friends.

>

>

> Has you illness been diagnosed? : I was diagnosed a year and a half

ago.

>

>

>

> How long did you suffer before you got help?: I lived with it a

year before I was diagnosed.

>

>

> Is there a time that you can remember when it started?: About 2 and

a half years ago

>

>

> Some of us have found lack of exercise we are overweight. Have you

found this to be a problem also?: Yes, I have gained a lot of weight.

>

>

> Are you on disability? : No

>

> If you are any pointers for others trying to get on disability?:

>

>

> What have you found that helps ease the pain, warm baths,

medications etc.?: I was given trazadone to help sleep, but I havent

found anything for the pain.

>

>

> Do you have sleep problems? How do you deal with it?

> Yes, I take trazadone, and sometimes kava kava root (it helps relax

your muscles and aids in sleep)

>

>

> Do you have family that understands your illness?: My mother and

fiance have been a tremendous support.

>

>

> Some have found certain foods causes problems with CFS or Fibro,

have you?: I find dairy foods make ibs worse.

>

>

> What type of Doctor have you found that has helped you the most?: I

havent.

>

>

> I look forward to being part of this group. Though I have

supportive family, it's been very difficult not having any one who

truly understand. Fibromyalgia has made me a ghost of the person I

used to be.

> Thank you

>

>

>

>

>

>

[Guest guest]

Hi,

I'm new as well.

cheers,

Tim

> Hi,

>

> my name is tracy and im another newbee to the group

>

> Age range: I'm 24 years old

>

>

> Male/female: I'm a female

>

>

> What are the symptoms? : pain mostly in my shoulders, lower back

and legs, have occasional " brain fog " , insomnia and bad short term

memory. Also have gained a lot of weight and am depressed. Hardest

symptom to cope with was losing all my friends.

>

>

> Has you illness been diagnosed? : I was diagnosed a year and a half

ago.

>

>

>

> How long did you suffer before you got help?: I lived with it a

year before I was diagnosed.

>

>

> Is there a time that you can remember when it started?: About 2 and

a half years ago

>

>

> Some of us have found lack of exercise we are overweight. Have you

found this to be a problem also?: Yes, I have gained a lot of weight.

>

>

> Are you on disability? : No

>

> If you are any pointers for others trying to get on disability?:

>

>

> What have you found that helps ease the pain, warm baths,

medications etc.?: I was given trazadone to help sleep, but I havent

found anything for the pain.

>

>

> Do you have sleep problems? How do you deal with it?

> Yes, I take trazadone, and sometimes kava kava root (it helps relax

your muscles and aids in sleep)

>

>

> Do you have family that understands your illness?: My mother and

fiance have been a tremendous support.

>

>

> Some have found certain foods causes problems with CFS or Fibro,

have you?: I find dairy foods make ibs worse.

>

>

> What type of Doctor have you found that has helped you the most?: I

havent.

>

>

> I look forward to being part of this group. Though I have

supportive family, it's been very difficult not having any one who

truly understand. Fibromyalgia has made me a ghost of the person I

used to be.

> Thank you

>

>

>

>

>

>

[Guest guest]

Hi,

I'm new as well.

cheers,

Tim

> Hi,

>

> my name is tracy and im another newbee to the group

>

> Age range: I'm 24 years old

>

>

> Male/female: I'm a female

>

>

> What are the symptoms? : pain mostly in my shoulders, lower back

and legs, have occasional " brain fog " , insomnia and bad short term

memory. Also have gained a lot of weight and am depressed. Hardest

symptom to cope with was losing all my friends.

>

>

> Has you illness been diagnosed? : I was diagnosed a year and a half

ago.

>

>

>

> How long did you suffer before you got help?: I lived with it a

year before I was diagnosed.

>

>

> Is there a time that you can remember when it started?: About 2 and

a half years ago

>

>

> Some of us have found lack of exercise we are overweight. Have you

found this to be a problem also?: Yes, I have gained a lot of weight.

>

>

> Are you on disability? : No

>

> If you are any pointers for others trying to get on disability?:

>

>

> What have you found that helps ease the pain, warm baths,

medications etc.?: I was given trazadone to help sleep, but I havent

found anything for the pain.

>

>

> Do you have sleep problems? How do you deal with it?

> Yes, I take trazadone, and sometimes kava kava root (it helps relax

your muscles and aids in sleep)

>

>

> Do you have family that understands your illness?: My mother and

fiance have been a tremendous support.

>

>

> Some have found certain foods causes problems with CFS or Fibro,

have you?: I find dairy foods make ibs worse.

>

>

> What type of Doctor have you found that has helped you the most?: I

havent.

>

>

> I look forward to being part of this group. Though I have

supportive family, it's been very difficult not having any one who

truly understand. Fibromyalgia has made me a ghost of the person I

used to be.

> Thank you

>

>

>

>

>

>

[Guest guest]

Hi Ron,

It's a hard road to try to diagnosis from so far away, so I can only advise

that you try to work with your medical folks there as best as you can.

Possible thoughts that I would have are 1. a cyst on the pancreas (3cm mass),

2. keep to low fat but raise the complex carbohydrates - you need the

calories that are easy to digest, 3. keep well hydrated - more than you have

been doing so far, 4. minimize the stress of work and travel and medical

worries (almost impossible but give it a try), I also think you have a

problem being in a country that has a long history of having very low

experience with Panc. problems - I would almost bet that the average doctor

in Japan sees a Panc. problem about once in a lifetime - maybe.

You didn't elaborate on your pain level and if you have relief from

analgesics. Rule of thumb is that if it's Panc. only heavy duty analgesics

will relieve the pain. Also if you are having a Panc. attack, immobility is

almost a necessity, another clue for you to consider.

Best of luck and best wishes, Poncho - GA

[Guest guest]

Hi Ron,

It's a hard road to try to diagnosis from so far away, so I can only advise

that you try to work with your medical folks there as best as you can.

Possible thoughts that I would have are 1. a cyst on the pancreas (3cm mass),

2. keep to low fat but raise the complex carbohydrates - you need the

calories that are easy to digest, 3. keep well hydrated - more than you have

been doing so far, 4. minimize the stress of work and travel and medical

worries (almost impossible but give it a try), I also think you have a

problem being in a country that has a long history of having very low

experience with Panc. problems - I would almost bet that the average doctor

in Japan sees a Panc. problem about once in a lifetime - maybe.

You didn't elaborate on your pain level and if you have relief from

analgesics. Rule of thumb is that if it's Panc. only heavy duty analgesics

will relieve the pain. Also if you are having a Panc. attack, immobility is

almost a necessity, another clue for you to consider.

Best of luck and best wishes, Poncho - GA

[Guest guest]

Having found a cyst on your pancreas, high urine amylase + an inflamed pancreas,

there's no doubt you had an attack of acute pancreatitis. Whether it's in the

chronic stage is more difficult to determine.

There are several causes for pancreatitis. 1 is alcohol consumption (since

you've had 1 attack of pancreatitis you shud never drink alcohol again, if u

do). Another is gallstones (I have + many others have had their gallbladder

removed). Yet another is high triglycerides (this happens to be my cause). My

levels run around 2000; whereas, the norm is 150. My body has a genetic defect

which disallows it from adequately metabolizing triglycerides. It's called type

5 hyperlipidemia. There are other causes; including heredity.

This is the right place to come to learn some info on pancreatitis. We aren't

experts, but we can speak from our own experiences. in Arizona. (Boy,

Japan, huh! I bet there are long lines. I read somewhere that Tokyo is the

most populated city in the world).

--

On Mon, 15 Jul 2002 18:38:24

Ron wrote:

>Hello to you all,

>

>My name is Ron , and I'm 32. I live in Japan, just north of Tokyo. I

>have not been " officially " diagnosed with CP, but I'm afraid it's just

>around the corner. If you don't mind, read on and either then tell me I

>don't belong here or that I have found my home.

>

>In late May I woke up with excruciating pain in my lower abdomen. It took me

>a good hour to get out of bed. I had a presentation to give later that day,

>so after the pain subsided I went about my business. My wife thought I might

>have pain from constipation, so I took a laxative. I felt a bit

>uncomfortable the rest of the day and diarrhea started at 4pm, just an hour

>after my presentation thank goodness. That night I woke up three different

>times with a burning sensation in my chest. The next day followed with more

>uncomfortableness. Monday, two days later, I went to see a doctor.

>

>For the first 10 days of all of this, the clinic prescribed medicine, which

>I'm still taking at this moment. During the first ten days I discomfort

>never really went away and I began to have some mid-back pain. Two weeks

>after the on-sent my doctor did an endoscopy (looking for ulcers) and

>followed with a CT and an ultrasound. The CT showed an inflamed pancreas.

>The first blood work I had showed the following:

>

>high amylase in my urine, which was down 10 days ago to " normal "

>low red blood cell count

>a bit low hematocrit count

>a bit long prothrombin time

>a bit high ZTT (I don't know what this is)

>low cholesterol level

>

>To shorten this up a bit, after that two week mark, I have undergone a total

>of three CTs, one MRI and three ultrasounds and a lot of blood work. They

>(thought they) found a tumor in my pancreas, but upon a visit to the

>National Cancer Center here those doctors ruled out cancer after doing a CT

>and more blood work. But a 3cm " something " shows up within the midst of my

>pancreas on CTs. Also the CT at the Cancer Center had reduced in size

>considerably from a CT taken just four days earlier.

>

>Last week I was out of town due to work. Tomorrow I see my doctor and will

>ask for a reference to a pancreas specialist.

>

>All of this has brought to my awareness that I cannot remember when my

>constipation/diarrhea mix first began. I have horrible (frightening!) gas.

>And I have a history of getting shakey, short tempered, and confused when

>I'm in the need for food. Since the end of May I have lost 15 pounds. I'm

>down to 139. I'm 5 feet 11 inches. My wife and I have been reading a lot

>lately, so I'm on a non-fat, low-calorie diet. My blood glucose levels have

>been " normal " .

>

>All of this is still very confusing for us, which should be apparent due to

>this " all-over-the-place " e-mail. :-)

>

>At times I don't worry too much, and then at times like now when I think

>about it all put together, it gets a bit scarier.

>

>The medical system here in Japan has its positives and negatives, the main

>ones being lost cost and long waits.

>

>From all of your experiences, am I in the right place, talking with the

>right people?

>

>Many thank yous for reading this far.

>

>My best,

>

>Ron

>

>

>

>

_____________________________________________________

Supercharge your e-mail with a 25MB Inbox, POP3 Access, No Ads

and NoTaglines --> LYCOS MAIL PLUS.

http://www.mail.lycos.com/brandPage.shtml?pageId=plus

[Guest guest]

You are most definitely in the right place. Please hang in there and

any specific questions you have we will try to answer. Please

remember our answers come from experience only and aren not

substitutes for your medical care.

Take care

Kaye Fortenberry

kfortenb@...

North Carolina Chapter Rep.

Pancreatitis Association International

- In pancreatitis@y..., " Ron " wrote:

> Hello to you all,

>

> My name is Ron , and I'm 32. I live in Japan, just north of

Tokyo. I

> have not been " officially " diagnosed with CP, but I'm afraid it's

just

> around the corner. If you don't mind, read on and either then tell

me I

> don't belong here or that I have found my home.

>

> In late May I woke up with excruciating pain in my lower abdomen.

It took me

> a good hour to get out of bed. I had a presentation to give later

that day,

> so after the pain subsided I went about my business. My wife

thought I might

> have pain from constipation, so I took a laxative. I felt a bit

> uncomfortable the rest of the day and diarrhea started at 4pm, just

an hour

> after my presentation thank goodness. That night I woke up three

different

> times with a burning sensation in my chest. The next day followed

with more

> uncomfortableness. Monday, two days later, I went to see a doctor.

>

> For the first 10 days of all of this, the clinic prescribed

medicine, which

> I'm still taking at this moment. During the first ten days I

discomfort

> never really went away and I began to have some mid-back pain. Two

weeks

> after the on-sent my doctor did an endoscopy (looking for ulcers)

and

> followed with a CT and an ultrasound. The CT showed an inflamed

pancreas.

> The first blood work I had showed the following:

>

> high amylase in my urine, which was down 10 days ago to " normal "

> low red blood cell count

> a bit low hematocrit count

> a bit long prothrombin time

> a bit high ZTT (I don't know what this is)

> low cholesterol level

>

> To shorten this up a bit, after that two week mark, I have

undergone a total

> of three CTs, one MRI and three ultrasounds and a lot of blood

work. They

> (thought they) found a tumor in my pancreas, but upon a visit to the

> National Cancer Center here those doctors ruled out cancer after

doing a CT

> and more blood work. But a 3cm " something " shows up within the

midst of my

> pancreas on CTs. Also the CT at the Cancer Center had reduced in

size

> considerably from a CT taken just four days earlier.

>

> Last week I was out of town due to work. Tomorrow I see my doctor

and will

> ask for a reference to a pancreas specialist.

>

> All of this has brought to my awareness that I cannot remember when

my

> constipation/diarrhea mix first began. I have horrible

(frightening!) gas.

> And I have a history of getting shakey, short tempered, and

confused when

> I'm in the need for food. Since the end of May I have lost 15

pounds. I'm

> down to 139. I'm 5 feet 11 inches. My wife and I have been reading

a lot

> lately, so I'm on a non-fat, low-calorie diet. My blood glucose

levels have

> been " normal " .

>

> All of this is still very confusing for us, which should be

apparent due to

> this " all-over-the-place " e-mail. :-)

>

> At times I don't worry too much, and then at times like now when I

think

> about it all put together, it gets a bit scarier.

>

> The medical system here in Japan has its positives and negatives,

the main

> ones being lost cost and long waits.

>

> From all of your experiences, am I in the right place, talking with

the

> right people?

>

> Many thank yous for reading this far.

>

> My best,

>

> Ron

[Guest guest]

You are most definitely in the right place. Please hang in there and

any specific questions you have we will try to answer. Please

remember our answers come from experience only and aren not

substitutes for your medical care.

Take care

Kaye Fortenberry

kfortenb@...

North Carolina Chapter Rep.

Pancreatitis Association International

- In pancreatitis@y..., " Ron " wrote:

> Hello to you all,

>

> My name is Ron , and I'm 32. I live in Japan, just north of

Tokyo. I

> have not been " officially " diagnosed with CP, but I'm afraid it's

just

> around the corner. If you don't mind, read on and either then tell

me I

> don't belong here or that I have found my home.

>

> In late May I woke up with excruciating pain in my lower abdomen.

It took me

> a good hour to get out of bed. I had a presentation to give later

that day,

> so after the pain subsided I went about my business. My wife

thought I might

> have pain from constipation, so I took a laxative. I felt a bit

> uncomfortable the rest of the day and diarrhea started at 4pm, just

an hour

> after my presentation thank goodness. That night I woke up three

different

> times with a burning sensation in my chest. The next day followed

with more

> uncomfortableness. Monday, two days later, I went to see a doctor.

>

> For the first 10 days of all of this, the clinic prescribed

medicine, which

> I'm still taking at this moment. During the first ten days I

discomfort

> never really went away and I began to have some mid-back pain. Two

weeks

> after the on-sent my doctor did an endoscopy (looking for ulcers)

and

> followed with a CT and an ultrasound. The CT showed an inflamed

pancreas.

> The first blood work I had showed the following:

>

> high amylase in my urine, which was down 10 days ago to " normal "

> low red blood cell count

> a bit low hematocrit count

> a bit long prothrombin time

> a bit high ZTT (I don't know what this is)

> low cholesterol level

>

> To shorten this up a bit, after that two week mark, I have

undergone a total

> of three CTs, one MRI and three ultrasounds and a lot of blood

work. They

> (thought they) found a tumor in my pancreas, but upon a visit to the

> National Cancer Center here those doctors ruled out cancer after

doing a CT

> and more blood work. But a 3cm " something " shows up within the

midst of my

> pancreas on CTs. Also the CT at the Cancer Center had reduced in

size

> considerably from a CT taken just four days earlier.

>

> Last week I was out of town due to work. Tomorrow I see my doctor

and will

> ask for a reference to a pancreas specialist.

>

> All of this has brought to my awareness that I cannot remember when

my

> constipation/diarrhea mix first began. I have horrible

(frightening!) gas.

> And I have a history of getting shakey, short tempered, and

confused when

> I'm in the need for food. Since the end of May I have lost 15

pounds. I'm

> down to 139. I'm 5 feet 11 inches. My wife and I have been reading

a lot

> lately, so I'm on a non-fat, low-calorie diet. My blood glucose

levels have

> been " normal " .

>

> All of this is still very confusing for us, which should be

apparent due to

> this " all-over-the-place " e-mail. :-)

>

> At times I don't worry too much, and then at times like now when I

think

> about it all put together, it gets a bit scarier.

>

> The medical system here in Japan has its positives and negatives,

the main

> ones being lost cost and long waits.

>

> From all of your experiences, am I in the right place, talking with

the

> right people?

>

> Many thank yous for reading this far.

>

> My best,

>

> Ron

[Guest guest]

Rosemary:

Welcome. boy it sure sounds like you have been through it. Really a psych

hosp? thats amazing. but belivable many of us had a dificult time with an

accurate diagnosis. Sorry to hear of your problems now. The mere mention of

an ERCP sends some into a frenzy. Alotof complications, more problems

following than before.

My name is . I am 35 and I have been diagnosed for 7 years. I have

pancreatic divisum and sphicter of oddi I have had many ERCP's with

sphincterotomies,stents. etc... For whatever reason I am doing well at the

moment but that has not always been the case I've been hospitalized over 40

times in those years. I think one year I counted I was home a total of 50

days -- for the entire year.

Ihave found great suport hear. always a caring ear and someone to vent to.

We all need to scream or cry sometimes and the people here are wonderful.

Sorry you have to deal with this disease but welcome to the group.

-SC

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Rosemary:

Welcome. boy it sure sounds like you have been through it. Really a psych

hosp? thats amazing. but belivable many of us had a dificult time with an

accurate diagnosis. Sorry to hear of your problems now. The mere mention of

an ERCP sends some into a frenzy. Alotof complications, more problems

following than before.

My name is . I am 35 and I have been diagnosed for 7 years. I have

pancreatic divisum and sphicter of oddi I have had many ERCP's with

sphincterotomies,stents. etc... For whatever reason I am doing well at the

moment but that has not always been the case I've been hospitalized over 40

times in those years. I think one year I counted I was home a total of 50

days -- for the entire year.

Ihave found great suport hear. always a caring ear and someone to vent to.

We all need to scream or cry sometimes and the people here are wonderful.

Sorry you have to deal with this disease but welcome to the group.

-SC

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

---

,

Thank you for responding to my post

what is pancreatic divisum? I am also sorry that you had a real

tough time too, I am so happy that you are doing well now. I just

posted about my ercp and how I got worse after it too, and dr, wants

to see if I develped a psueodocyst. I wont repeat myself lol, but, I

think that he dont want to admit that the ercp just made me worse.

who knows?? I 'll find out for sure after ctscan. You r my age too.

Do you know how you got your cp?? I also posted before about genetic

testing ...did u do that??

Rosemary

In pancreatitis@y..., " SHANNON TUTEN " wrote:

>

> Rosemary:

>

> Welcome. boy it sure sounds like you have been through it. Really a

psych

> hosp? thats amazing. but belivable many of us had a dificult time

with an

> accurate diagnosis. Sorry to hear of your problems now. The mere

mention of

> an ERCP sends some into a frenzy. Alotof complications, more

problems

> following than before.

> My name is . I am 35 and I have been diagnosed for 7 years.

I have

> pancreatic divisum and sphicter of oddi I have had many ERCP's with

> sphincterotomies,stents. etc... For whatever reason I am doing well

at the

> moment but that has not always been the case I've been hospitalized

over 40

> times in those years. I think one year I counted I was home a total

of 50

> days -- for the entire year.

> Ihave found great suport hear. always a caring ear and someone to

vent to.

> We all need to scream or cry sometimes and the people here are

wonderful.

> Sorry you have to deal with this disease but welcome to the group.

>

> -SC

>

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

[Guest guest]

---

,

Thank you for responding to my post

what is pancreatic divisum? I am also sorry that you had a real

tough time too, I am so happy that you are doing well now. I just

posted about my ercp and how I got worse after it too, and dr, wants

to see if I develped a psueodocyst. I wont repeat myself lol, but, I

think that he dont want to admit that the ercp just made me worse.

who knows?? I 'll find out for sure after ctscan. You r my age too.

Do you know how you got your cp?? I also posted before about genetic

testing ...did u do that??

Rosemary

In pancreatitis@y..., " SHANNON TUTEN " wrote:

>

> Rosemary:

>

> Welcome. boy it sure sounds like you have been through it. Really a

psych

> hosp? thats amazing. but belivable many of us had a dificult time

with an

> accurate diagnosis. Sorry to hear of your problems now. The mere

mention of

> an ERCP sends some into a frenzy. Alotof complications, more

problems

> following than before.

> My name is . I am 35 and I have been diagnosed for 7 years.

I have

> pancreatic divisum and sphicter of oddi I have had many ERCP's with

> sphincterotomies,stents. etc... For whatever reason I am doing well

at the

> moment but that has not always been the case I've been hospitalized

over 40

> times in those years. I think one year I counted I was home a total

of 50

> days -- for the entire year.

> Ihave found great suport hear. always a caring ear and someone to

vent to.

> We all need to scream or cry sometimes and the people here are

wonderful.

> Sorry you have to deal with this disease but welcome to the group.

>

> -SC

>

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

[Guest guest]

> 2 weeks. So far it's only added to my weight gain. The doctors

> won't prescribe pain meds - say it won't help fibro - and I'm to

> just " suck it up. "

>

> Pain medication does help fibro. I think that a goodly number of us on

> this list do. I know that I do and I couldn't cope without it as my pain

> is about a 8 most of the time.

>

> Ask your doctor where he got his information from that pain medications

> don't help pain. That is what fibro is -- a lot of pain with many other

> things thrown in for good measure. I would then go find me a doctor that

> understands that you need pain relief and that you have fibro.

Take care,

Irene

Books may well be the only true magic

Alice Hoffman

[Guest guest]

> 2 weeks. So far it's only added to my weight gain. The doctors

> won't prescribe pain meds - say it won't help fibro - and I'm to

> just " suck it up. "

>

> Pain medication does help fibro. I think that a goodly number of us on

> this list do. I know that I do and I couldn't cope without it as my pain

> is about a 8 most of the time.

>

> Ask your doctor where he got his information from that pain medications

> don't help pain. That is what fibro is -- a lot of pain with many other

> things thrown in for good measure. I would then go find me a doctor that

> understands that you need pain relief and that you have fibro.

Take care,

Irene

Books may well be the only true magic

Alice Hoffman

[Guest guest]

> 2 weeks. So far it's only added to my weight gain. The doctors

> won't prescribe pain meds - say it won't help fibro - and I'm to

> just " suck it up. "

>

> Pain medication does help fibro. I think that a goodly number of us on

> this list do. I know that I do and I couldn't cope without it as my pain

> is about a 8 most of the time.

>

> Ask your doctor where he got his information from that pain medications

> don't help pain. That is what fibro is -- a lot of pain with many other

> things thrown in for good measure. I would then go find me a doctor that

> understands that you need pain relief and that you have fibro.

Take care,

Irene

Books may well be the only true magic

Alice Hoffman

[Guest guest]

Irene writes:

Pain medication does help fibro. I think that a goodly number of us on

> this list do. I know that I do and I couldn't cope without it as my pain

> is about a 8 most of the time.

>

> Ask your doctor where he got his information from that pain medications

> don't help pain. That is what fibro is -- a lot of pain with many other

> things thrown in for good measure. I would then go find me a doctor that

> understands that you need pain relief and that you have fibro.

Take care,

Irene

My doctors, including my Rheumy believe the same thing. They only agreed to

prescribe Vioxx and Naprosyn after x-rays proved I have Osteoarthritis too. They

say the only things that will help Fibro are anti-depressants, exercise and

getting the proper sleep.

Then Medicaid refused to pay for Vioxx any longer, so I'm just using 375 mg

Naprosyn twice a day. It never stops the pain, but I guess it's better than

nothing.

{{{Hugs}}}

Jacqui

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.381 / Virus Database: 214 - Release Date: 8/2/2002

[Guest guest]

Irene writes:

Pain medication does help fibro. I think that a goodly number of us on

> this list do. I know that I do and I couldn't cope without it as my pain

> is about a 8 most of the time.

>

> Ask your doctor where he got his information from that pain medications

> don't help pain. That is what fibro is -- a lot of pain with many other

> things thrown in for good measure. I would then go find me a doctor that

> understands that you need pain relief and that you have fibro.

Take care,

Irene

My doctors, including my Rheumy believe the same thing. They only agreed to

prescribe Vioxx and Naprosyn after x-rays proved I have Osteoarthritis too. They

say the only things that will help Fibro are anti-depressants, exercise and

getting the proper sleep.

Then Medicaid refused to pay for Vioxx any longer, so I'm just using 375 mg

Naprosyn twice a day. It never stops the pain, but I guess it's better than

nothing.

{{{Hugs}}}

Jacqui

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.381 / Virus Database: 214 - Release Date: 8/2/2002

[Guest guest]

Hi! Welcome!

My son has some liver disease with his CF, but it is unspecified as to

what kind, or if it is due to the alpha-1 or the CF or some combination.

We started him on Ursodiol (also called Actigall or Ursofalk) about 6

months ago, and have noticed a great improvement in liver numbers...they

are just about into the normal range now, which is great!

Have they tested your daughter for other possible liver disorders? That

is how we found out that both my children have alpha-1 antitrypsin

deficiency.

^-^-^-^-^-^-^-^-^-^-^-^-^-^-^-^-^

mama to , 23 mo, wCF and alpha-1

and to , 3 yr 11 mo w/alpha-1

New to the group

Hello all.

I am a parent of a 13 year old girl with Cystic Fibrosis and Bilary

cirrosis of the liver, although this is not a common form, I have

been looking for other families with children that have liver

disease with their illness as I have not been able to find much

information on this pacific form of Cystiv fibrosis, all advice

welcome.

Thank you,

earth_angel_1968

[Guest guest]

Thank you so much for the welcome,

our daughter was diagnosed in 1998 with C.F, the following month she was found

to have liver disease, she bled out the same year in october, the Drs. say the

reason she had such a late diagnoses was due to the fact that it had struck her

liver instead of the digestive tract and her lungs, she has just resently gotten

liver spots on her neck.

is there ever a time that everyone meets at chat? Just curious I was there

twice and I was the only one in.

Arcuri Ware wrote:Hi! Welcome!

My son has some liver disease with his CF, but it is unspecified as to

what kind, or if it is due to the alpha-1 or the CF or some combination.

We started him on Ursodiol (also called Actigall or Ursofalk) about 6

months ago, and have noticed a great improvement in liver numbers...they

are just about into the normal range now, which is great!

Have they tested your daughter for other possible liver disorders? That

is how we found out that both my children have alpha-1 antitrypsin

deficiency.

^-^-^-^-^-^-^-^-^-^-^-^-^-^-^-^-^

mama to , 23 mo, wCF and alpha-1

and to , 3 yr 11 mo w/alpha-1

New to the group

Hello all.

I am a parent of a 13 year old girl with Cystic Fibrosis and Bilary

cirrosis of the liver, although this is not a common form, I have

been looking for other families with children that have liver

disease with their illness as I have not been able to find much

information on this pacific form of Cystiv fibrosis, all advice

welcome.

Thank you,

earth_angel_1968

[Guest guest]

Hi ,

if you go to Pubmed

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed

and search for liver cirrhosis and CF you'll find almost two hundred

related articles to your problem. I have copied one below.

Welcome to the list, I hope we can give you some info and support.

Peace

Torsten, dad of Fiona 5wcf

Hi! Welcome!

>

> My son has some liver disease with his CF, but it is unspecified as

to

> what kind, or if it is due to the alpha-1 or the CF or some

combination.

> We started him on Ursodiol (also called Actigall or Ursofalk) about

6

> months ago, and have noticed a great improvement in liver

numbers...they

> are just about into the normal range now, which is great!

>

> Have they tested your daughter for other possible liver disorders?

That

> is how we found out that both my children have alpha-1 antitrypsin

> deficiency.

>

> ^-^-^-^-^-^-^-^-^-^-^-^-^-^-^-^-^

>

> mama to , 23 mo, wCF and alpha-1

> and to , 3 yr 11 mo w/alpha-1

>

>

> New to the group

>

> Hello all.

> I am a parent of a 13 year old girl with Cystic Fibrosis and Bilary

> cirrosis of the liver, although this is not a common form, I have

> been looking for other families with children that have liver

> disease with their illness as I have not been able to find much

> information on this pacific form of Cystiv fibrosis, all advice

> welcome.

> Thank you,

> earth_angel_1968

>

>

>

>

>