Re: recently diagnosed and afraid to Paints

[Guest guest]

> I have been recently diagnosed with Actute Pancreatitis and I

don't know what to do to help myself. .

Do other people with this have horrible intenstinal spasms? I get

them often...and afer I eat too. My stools turned to a real light clay

color and I know I am having attacks.

Can anyone help me?

Am I going to die from this? Do people live long lives with this?

I wonder what I can do for myself to make this stop? Paints

Dear Paints,

Is your doctor a gastroenterologist? If not, I suggest you make

an appointment with one as soon as you can. From your

description of your symptoms, I would guess that your acute

pancreatitis has now progressed to chronic pancreatitis. This

happens with many after their first few acute attacks.

You should be avoiding high fat foods, alcohol in all forms, and

any foods that are fried. Most of us try to keep our fat gram limits

to no more than 20 each day, nor more than 6 per meal or snack.

It is better to eat several smaller meals several times during the

day, than three large ones. Most of us also take enzyme

supplements when we eat, this helps with those awful intensinal

spasms and also with how our food is digested. Your clay

colored stools are a sign of some malabsorption, and can be

helped with pancreatic enzymes, so I suggest you talk with your

doctor and have him or her prescribe them for you. This doctor

should also be prescribing you something for pain control, most

of us use some type of narcotic pain reliever to help us through

the worst of the pain episodes.

There's more liklihood of you dying in a car accident or even

walking across the street than from chronic pancreatitis. If the

disease is managed well by diet, abstinence of alcohol, pain

medication, and sometimes surgery, one can expect to live a

very long time. I know of people that have had it for 20-30 years

and are still going strong.

Although it seems very frightening right now, we have all walked

in your shoes through that period, and you will learn that the

more you learn about the disease, the less fear you will

experience. Read back through the old posts or research for

information at our library at:

http://www.top5plus5.com/

and you will soon feel more comfortable with your disease and

hopefully will want to adopt a way of living that will allow you to

manage it well.

Please post again with any questions. We'll do all we can to

reassure you and help you through the adjustments ahead.

With hope and prayers,

Heidi

Heidi H. Griffeth

Bluffton, SC

State and Regional Representative

Pancreatitis Association, International

Note: All comments are personal opinion only, and should not

be a substitute for professional medical consultation.

[Guest guest]

Dear Heidi,

Thank you for responding. Yes, My doctor is a gastroenterologist.

They did some tests and found that cronic changes have not occured

yet, but the acute keeps coming back. Sometimes it is like one big

long attack rather than 2 seperate. I don't drink, but will take

your advise when it comes to the small meals and fat intake.

Is the likelyhood of dying greater in people with acute pancreatitis

that in people with chronic? There are times when I know for

certain that I am having an attack, yet my enzymes are not

elevated. Do you know why this is?

I have been reading the past posts and am so gratefull this site is

here. Thanks again Heidi for taking the time to respond. Paints

>

> > I have been recently diagnosed with Actute Pancreatitis and I

> don't know what to do to help myself. .

> Do other people with this have horrible intenstinal spasms? I get

> them often...and afer I eat too. My stools turned to a real light

clay

> color and I know I am having attacks.

> Can anyone help me?

> Am I going to die from this? Do people live long lives with

this?

> I wonder what I can do for myself to make this stop? Paints

>

>

> Dear Paints,

>

> Is your doctor a gastroenterologist? If not, I suggest you make

> an appointment with one as soon as you can. From your

> description of your symptoms, I would guess that your acute

> pancreatitis has now progressed to chronic pancreatitis. This

> happens with many after their first few acute attacks.

>

> You should be avoiding high fat foods, alcohol in all forms, and

> any foods that are fried. Most of us try to keep our fat gram

limits

> to no more than 20 each day, nor more than 6 per meal or snack.

> It is better to eat several smaller meals several times during the

> day, than three large ones. Most of us also take enzyme

> supplements when we eat, this helps with those awful intensinal

> spasms and also with how our food is digested. Your clay

> colored stools are a sign of some malabsorption, and can be

> helped with pancreatic enzymes, so I suggest you talk with your

> doctor and have him or her prescribe them for you. This doctor

> should also be prescribing you something for pain control, most

> of us use some type of narcotic pain reliever to help us through

> the worst of the pain episodes.

>

> There's more liklihood of you dying in a car accident or even

> walking across the street than from chronic pancreatitis. If the

> disease is managed well by diet, abstinence of alcohol, pain

> medication, and sometimes surgery, one can expect to live a

> very long time. I know of people that have had it for 20-30

years

> and are still going strong.

>

> Although it seems very frightening right now, we have all walked

> in your shoes through that period, and you will learn that the

> more you learn about the disease, the less fear you will

> experience. Read back through the old posts or research for

> information at our library at:

>

> http://www.top5plus5.com/

>

> and you will soon feel more comfortable with your disease and

> hopefully will want to adopt a way of living that will allow you

to

> manage it well.

>

> Please post again with any questions. We'll do all we can to

> reassure you and help you through the adjustments ahead.

>

> With hope and prayers,

> Heidi

>

>

> Heidi H. Griffeth

> Bluffton, SC

> State and Regional Representative

> Pancreatitis Association, International

>

> Note: All comments are personal opinion only, and should not

> be a substitute for professional medical consultation.

[Guest guest]

Hi Paints...I can address one of your questions as I have normal

enzyme levels too because my triglyceride levels (TG's) are off the

chart (in the thousands) which is what causes my attacks. I am glad

your doctor recognizes you can be having an attack even when your

enzymes are not elevatd. The TG's hide or mask the true level of the

enzymes. I do not know, however, if there are other things that

affect the values of the lab tests...

Wlecome to the group, I think you will find many fine and caring

individuals here...Ihave been a member only 2-3 months now so don't

feel like you are the only new person....I think we have several who

have only been her a couple of weeks.

Take it easy....Jeannine in WA

There are times when I know for certain that I am having an attack,

yet my enzymes are not elevated. Do you know why this is?

[Guest guest]

Paints

What type of tests did they do? My Cassie has gone thru tons. Except for

SPINK1 which is a gentetic mutation all her tests come back normal yet

everyone of her Doctors say her dx is idiopathic chronic recurrent

pancreatitis. You cant trust tests! They are not the difinitive answer to

your problem, your symptoms are alos part of the diagnosis as well as the

frequency.

Patty Hurst

Bangor, ME

Maine State Rep

PAI

[Guest guest]

Hi, Thanks for writing! This time, I only had the amylaze (not sure

of spelling) Lypaze...and hepa panel. They all came back in the

normal range. The last time I felt like this I ended up in the

hospital with actue Pancreatitis. My amylaze was 39,000...and lypaze

was up there too. I know that I am having an attack again, though it

has eased up some. They did an MRI to see if there were any chronic

changes about 4 months ago...and there weren't. They do not know

why I am having this trouble. They had said they think medication

brought a genetic disorder to the forefront...but then, they have

said a lot of things. I like my doctor...don't get me wrong. I

just don't think they know as much as they would like to in order to

help me. Paints

> Paints

>

> What type of tests did they do? My Cassie has gone thru tons.

Except for

> SPINK1 which is a gentetic mutation all her tests come back normal

yet

> everyone of her Doctors say her dx is idiopathic chronic recurrent

> pancreatitis. You cant trust tests! They are not the difinitive

answer to

> your problem, your symptoms are alos part of the diagnosis as well

as the

> frequency.

>

>

> Patty Hurst

> Bangor, ME

> Maine State Rep

> PAI

>

>

>

[Guest guest]

Thanks for writing Jeannine,

My trig. are normal...they used to be anyway. I am interested in

finding out if anyone else has this problem. The pain has lessoned

a lot. I still have pain in my right side, and when I eat, but

other than that, feel much better than I did. Do you get really

stressed when you have an attack? I noticed that I pace. Crazy

perhaps, maybe it is fear, but I just pace when I go into that labor

like pain. Well, thanks again...Paints

>

> There are times when I know for certain that I am having an

attack,

> yet my enzymes are not elevated. Do you know why this is?

[Guest guest]

I never thought of calling it " stressed " I just know I can't get

comfortable, no matter whether I'm sitting or standing or lying

down...and this can be with a mild one. The more intense attacks

like the one I had last week involve sitting on the pot quite a bit

so there's not much time for pacing ! Last week's attack was one

of my worst. My very worst one I think was in 1998, after having the

first one in 1994.

I'm sorry we haven't found better answers to your questions...keep

searching, it's bound to come up somewhere.

Do you take enzymes when you eat? I buy papaya ones at the health

food store (they are chewable and quite tasty actually). I also have

been given a prescription for Creon. I take about 60 mgs with each

meal.

Take it easy...Jeannine

> Thanks for writing Jeannine,

> My trig. are normal...they used to be anyway. I am interested in

> finding out if anyone else has this problem. The pain has lessoned

> a lot. I still have pain in my right side, and when I eat, but

> other than that, feel much better than I did. Do you get really

> stressed when you have an attack? I noticed that I pace. Crazy

> perhaps, maybe it is fear, but I just pace when I go into that

labor

> like pain. Well, thanks again...Paints

>

[Guest guest]

I have done intense research into otc available enzymes - and IMO - they are

not relyable. Why not just eat the damn Papaya? I have found research

sugesting that the qty of enzymes in OTC brands can vary greatly tablet to

tablet. I don't know about you but we are not willing to take that chance

with Cassie.

Patty Hurst

Bangor, ME

Maine State Rep

PAI