To new member (also long)

[Guest guest]

wrote:

Does anyone else have continual pain?

If its really bad it feels like I just want to bend over and more to the left.

My amylase stays just above normal anything over 50 is high and mine is usually

between

115-160.

I was started on enzymes which help to curb nausea, but not pain.

Has anyone experienced a fullness? What might the fullness be from?

How long for the disease to progress once symptoms start?

How would I know whether I am having early signs of cancer or chronic condition?

Dear ,

Your questions are always welcome. I'll try to answer some of your questions

the best I

can from my own experiences, but you will find that each of us is different and

although

there are many similarities in some of what we experience, there are also many

variations.

Some members have SOD (Sphincter of Oddi) problems like those you speak of, but

not

all. Since I don't have any problems or experience with that, I'll leave that

discussion up to

those that do.

What I have learned is that there are basic types of pancreatitis. There's

pancreatitis that's

caused by alcohol or gallbladder problems, which becomes calcific or calcifying

pancreatitis, (that's what I have). Then there's pancreatitis that is caused by

organ

abnormalties that cause obstuction of the ducts, called obstructive

pancreatitis. Thirdly is

genetic pancreatitis, where the disease is passed down from one family member to

another. You can also get pancreatitis from too much of certain medicines that

are

harmful to the pancreas, or from scorpion bite (but that species isn't in North

America).

Pain seems to be one symptom that we all share. Location of the pain can vary.

While

some patients only have abdominal pain, we've learned through discussion on this

site

that it can be left sided pain, right sided pain, in the middle, lower or upper.

There's not

one precise area that's affected for all. Some patients also have back pain

that

accompanies the front abdominal pain, there again, it can be on the left, right,

in the

center or both places. I've heard of patients that don't experience much

abdominal pain,

too, all their pain is in their back.

So, you can see that there aren't any straight answers to the location of the

pain problem.

If there were, it would make this mysterious disease much easier to diagnose.

As it stands

right now, pancreatitis is still very much of a mystery to most physicians, and

to many of

the gastroenterology specialist's, too!

Many of us have continual pain. In my case, my pain is now caused by two

pseudocysts in

my pancreas because my pancreas burned out about 15 months ago. Prior to that,

the

pain was from both the calcified pancreas and pseudocysts, and it had become

continual.

Before my pancreas burned out, I had been on pain meds on a 24 hour basis,

daily, for

about three months. That bending over position is one that most of us favor

when the

pain becomes most intense. That's also when we curl up in a fetal positon in

bed, either

to sleep, or for relief.

Prior to pancreas burnout, my amylase levels were always about 50 points above

normal.

My doctor said in my case it was caused by the continual inflamatory situation

caused by

my pseudocysts.

What enzymes were (are) you taking? I took enteric coated enzymes (Lipram,

Ultrase and

Creon) for two years that were helpful with digestion and some after-meal pain,

but when

I switched to Viokase enzyme tablets taken with a proton pump prohibitor that I

finally

found an enzyme that really helped with the pain. Have you tried Viokase?

Sometimes the

enzymes don't help some people, but it is worthwhile to try a few different

types before

you give up on them entirely.

I don't know what the fullness is from, but I do know that many of us experience

it, off and

on. Some days it's not even possible to wear the same pants that were

comfortable just

the day before!

There's no straight answer on how long the disease progresses before it becomes

chronic,

or before pancreas burnout is achieved, if at all. In my case, I was first

diagnosed in April

of 2001 when I was hospitalized for the first time with an acute attack where

they found

that I had two pseudocysts that had already developed. My symptoms for six

months

prior to that had been as yours were before your first visit to the ER. Within

two weeks of

this admission I was diagnosed chronic. In less than two years, (twenty three

months, to

be exact) I was admitted to the ER with diabetic ketoacidosis and complete

pancreas

burnout. Undeniably, this timeframe is extremely rare, but it happened that

fast, so that's

why I say that there's not a straight answer. There are many people that have

gone years

before they're chronic, and many that have had chronic pancreatitis for years

and years

who don't reach burnout.

If the experiences with pain are happening on a regular basis, I would call that

chronic. I

don't have any medical degree or training, this statement is just based on my

own

experiences and from discussion with other members. When I was first diagnosed,

I could

go for a week or two without any pain, but then suddenly, there it was. At

first it might

only be troublesome for a few hours or a day, with days of wellness in between.

Over

time, the pains increased and the need for medication to ease the pain

increased. I then

followed a very strict low fat diet (no more than 20 grams of fat daily), and

never have

alcohol in any form, yet the disease progressed very rapidly. My diet has eased

up slightly

now since burnout. I presume you've been advised about the need for a low fat,

low

protein diet and total abstination from alcohol.

Your doctor can easily do a tumor marker test, called a CA-19-9, which is the

test for

pancreatic cancer. While it's not 100% foolproof, it's a good indicator.

Pancreatic cancer

can also be detected on a CT-scan. I've had the cancer marker test done every 6

months

and had 16 CT-scans to monitor my pseudocysts in the last three years, so far

everything

for me has been in the clear. If you have any fears about this, ask your doctor

to have you

tested.

I hope this helps to answer some of your questions, and I know that you'll be

hearing from

many others, as well. We have a great group here of friendly members who are

always

willing to share their knowledge and experience in order to help each other.

You may be

comforted to know that many here have undergone experiences just as prolonged

and

confusing as your own. While this does not diminish the anguish, frustration or

fear of

your own personal experiences, I hope it shows you that here you're truly

understood, and

that you're not alone.

Think good thoughts,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI

Note: All comments and advice are based on personal opinion, and should not be

substituted for professional medical consultation.