What started your CP?

[Guest guest]

,

You were wondering what the initial cause of our CP was. A few weeks ago I

would have answered " alcoholic pancreatitis " , since that is what my initial

diagnosis was. My doctor, though, does not believe this to be true, and has

stated so. He says that I don't fit the alcoholic profile, and he believes that

because I told the doctors at the time of my first attack that I did consume

alcohol in the past that they immediately labeled it as an alcohol related case.

I

did drink in the past, but have not had any alcohol in the last 2 1/2 years, yet

I

continue to have increasing problems. First there was the pancreas burn-out,

and now for some unknown reason, my pseudocysts continue to enlarge and

become severly inflamed. He said that with most of his alcoholic patients, once

they cease drinking alcohol, their pain lessens and their attacks become more

and more infrequent, and that with many, within three years, nearly all their

pain is gone.

I don't personally know if this is true, because it surely hasn't happened with

me! Yet he told me he has seen this many times in his practice with CP

patients. Since I don't fit into this profile, and thank heavens, he believes

me

when I say I have totally abstained, he believes there is another cause for my

continued problems. He said the ones that continue to drink, even just a little

bit a few times a year, are the ones that continue to have all the typical CP

distress.

That's why he believes my cause may be genetic, and has been mildly

pressuring me into having the appropriate tests done to see if they can identify

any of the three gene mutations that can cause AP or CP. These genes are

the PRSS1, the cationic trypsinogen (protease, serine, 1) or the SPINK1, which

is the pancreatic secretory trypsin inhibitor (serine protease inhibitor,

Kazel-type) or the cystic fibrosis transmembrane conductance regulator (CFTR)

gene.

This is not to be confused with heriditary pancreatitis, where their is a known

history of pancreatitis which is passed among family members from generation

to generation.

I told my GI last week that I wasn't sure whether testing would be of any

benefit, since once you have CP, the treatment is the same for everyone, no

matter what the " cause " of their AP/CP is. He said that while this was true, it

might be something I'd want to know to inform my children and grandchildren to

look out for in the future. That made sense.

I told him that if my insurance company is willing to pay for all the tests that

would be required to look for a genetic cause, I'd be more than happy to take

the tests. We are waiting for a review from the insurance company before we

proceed.

Hope that answers your question.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI, Intl.

Note: All comments or advice are personal opinion only, and

should not be substituted for professional medical consultation.

> , mine started because of a polyp growing and blocking the

pancreatic duct.