To Giovanni

[Guest guest]

Hello Giovanni,

I'm so sorry you are going through this bad pain. As someone who has

had pancreatic disease all her life (I'm 58 and had my first attack

53 years ago at the age of 5) I do sympathise. BTW, it was only last

year that I finally got a definitive diagnosis following CAT scan

etc.

My case did not follow the exact pattern that yours has done. HI

hope others with a more similar history will post as well.

However, I can only advise you to try very hard to find a really

experienced pancreatic spacialist as such. Even gastros don't see

many cases of chronic pancreatitis; they deal with all sorts of

conditions affecting the digestive system as a whole. Chronic

pancreatitis is both rare and difficult to diagnose. A doc who

specialises particularly in the pancreas and its diseases is worth

finding. I'm not sure where you live. I'm in the UK. If you live in

the US, possibly someone who posts on the site could direct you to a

good pancreatologist/pancreatic surgeon.

The disease does go through different stages so please don't lose

heart. I'm sure others will post with practical suggestions.

I have advanced CP with calcifications throughout the pancreas. I

have been very ill many times in my life. I was having repeated and

frequent attacks of abdominal pain leading up to my daignosis a year

ago. I was put on a regime of fairly low-fat diet, no alcohol

whatsoever (even though alcohol wasn't the cause of my condition)

and Creon (enzymes) every time I eat. I have definitely improved

although I still have bad days when I take a codeine medication for

the pain. Please don't lose hope. This is a tough disease to beat.

My gastro, who is great, referred me to the pancreatic

specialist/surgeon in the same hospital and he prescribed the same

regime as the gastro had but with higher doses of the Creon. I am

lucky in having near me an outstanding pancreatic team. I know

others who travel long distances to come to my hospital to see my

specialist. It would be worth your while to travel if you got the

right doc. A pancreatic specialist knows what pain you're in and

will respond accordingly. Pancreatitis is notoriously painful and

the panc specialist knows that. (Mind you, my DENTIST(!!) told me

the other day that it was well known that pancreatic pain is among

the worst we can suffer.)

Giovanni, you may already have a doc whom you trust implicitly. I am

certainly not criticising any doc! I'm only saying that with this

difficult, temperamental and little-known organ, it's possibly worth

searching for the best expert that you could reasonably reach.

I hope that's not confusing.

I wish you luck and hope that others with directly similar

experiences will answer as well.

With good wishes,

Fliss (UK)