To Ricki

[Guest guest]

Hi Ricki,

I have hereditary pancreatitis as well and my attacks also go right

back to my childhood. My disease hasn't developed exactly like yours

but I do have the history of misdiagnosis. In fact, I only got my

final definitive diagnosis last year....after 53 years, yes, that's

55, of symptoms, attacks etc.etc.

I am going to have an EUS myself any day now. I have also had CT

scans. It was a CT scan which gave me the diagnosis last year...it

showed extensive calcifications throughout the pancreas. I had an

ERCP in 1988 but that didn't show anything definite at that

time.Tests don't always show up the damage. The different imaging

techniques definitely do show up the pancreas in different ways so I

would say it's worth having the EUS if you're fortunate enough to be

able to access it; not everyone can get it done. I'll be having

another ERCP soon (ugh!)...see my earlier posts to-day.

I have impaired glucose tolerance and am expected to be diabetic

soon.

Every case is different, Ricki, but this is a regime which I find

has at least helped me. It may not work for you or it may be

difficult anyway for you to put into practice:

(1) Find a pancreatologist, if possible. Even gastroenterologists

don't always know as much as the doc who specialises only in

pancreatic diseases, treatment and surgery.

(Has any surgeru ever been suggested?)

(2) Small low fat meals (I know you said you cannot eat just now.)

If this fails, ask your specialist about adequate feeding methods.

You need to be nourished.

(3) Enzymes. Do you take enzyme preparations such as Creon? I take

high doses as prescribed by my pancreatologist. It has helped me.

Plenty of water needed also.

(4) No alcohol. Like you, I didn't drin much but I do miss the odd

glass of good red wine. still, it's a strict rule for all of us,

sadly!

(5) Adequate pain medication. You seem to have that already.

(6) Not too much exercise or, rather, not too vigorous. That's no

problem for me at all...but it might be for you.

(7) Many people take an anti-oxidant preparation as well and find it

helpful. we could give you details.

I think I would try to find a pancreatic specialist if you can. They

are likely to be up-to-date with the latest treatments etc. I think

this is especially the case if you have a genetically determined

form of CP. have you had genetic testing? Again, this is a rare

condition so it's important to find the right specialist.

I am NOT, NOT knocking your current docs, only asking a question. My

gstroenterologist was able to refer me to the pancreatic team at my

local hospital when he diagnosed the CP last year. I happen to

attend the Liverpool Royal Hospital which has a leading panc team. I

don't live too far away but many people attend from different parts

of the UK just to see the specialist. (I apologise if you alraedy

see such a specialist!)

I am really sorry you are going through a tough time. BTW, I was at

my sickest, in terms of the way I actually felt, back in the 1980's

and things calmed down somewhat. don't lose hope. we're all here and

we do understand what that pain means.

With very good wishes,

Fliss (UK)

I hope all that doesn't sound too obvious.