For Percy

[Guest guest]

Hellp Percy,

I do sympathise as will everyone on this site who either has CP or

is a caregiver. I can't recommend a doctor (I live in the UK) but

I'm sure someone else may be able to give you the name of a good

doc. in your area.

You need someone who has real experience with pancreatic diseases.

This is a rare condition and most docs see very few cases in a

lifetime. Science is still at a relatively early stage with regard

to understanding the pancreas and its diseases. Have you had a

referral to a pancreatologist as such? At the very least, you need a

really experienced gastroenterologist, preferably in a major

hospital, perhaps a teaching one. He or she will then be able to try

to assess the exact damage to the pancreas and the optimum

treatment. Tests are not always clear-cut in diagnosing CP damage,

unless it is very obvious or extensive, so experience in the doc is

crucial.

A pain management specialist could also help. You could ask the panc

specialist about that too.

A lot of docs ARE wary about pain medication, I know. The " trick " is

to try to get the balance right between, lifestyle (diet, exercise,

work, rest etc.), enzymes (such as Creon or Viokase) to help with

malabsorption, heat treatment ( hot baths and hot water bottles or

heating pads) and pain-killers when needed. A good pancreatologist

will help with all these but should also know if the point arrives

when surgery is needed for further help. Sometimes only a

pancreatologist will even recognise the problem. Many of us had

mistaken diagnoses along the way. It depends on what the damage is.

Like , I have hereditary pancreatitis and had my first flare-

up at the age of 5....now 58! In 1988 an ERCP and CT scan (both of

which tests are probably more sophisticated to-day, admittedly) in

the hands of an eminent gastroenterologist missed my CP, or, at

least, was unsure. Only now, with extensive calcifications

throughout the pancreas, has the CP been recognised in a more recent

scan. It's not an easy disease to diagnose or treat. I think an

experienced pancreatic specialist might have recognised it even back

in 1988, although, of course, I can't be sure.

As says, we all at least understand. One simply never knows

from hour to hour when the pain will strike....or

nausea.....exhaustion.....weakness etc. Most of us are just trying

to minimise pain and discomfort. Try not to be too discouraged. I

know it's hard at times. There really is no easy answer but a lot

can often be done to help esse the symptoms.

With good wishes,

Fliss