Chronic pancreatitis

[Guest guest]

Hi Jen,

I'm so sorry you are feeling unwell and in pain.

I'm not a doctor and I certainly can't tell what is causing your

pain, especially if you have gall stones and the doc thinks the gb

needs to come out.

However, it sounds from other things as though you could well have

CP. What I can say with certainty is that it's very possible to have

CP without any apparent damage to the panc which shows up on tests

of the sort you have had.

I have hereditary pancreatitis and was only five when I had my first

severe attack. I'm now 58. In 1988 I was at my illest (in terms of

how

I felt), with constant pain, sometimes very severe, and constant

diarrhoea and steatorrhoea. I also lost weight pretty dramatically.

I had an ERCP and a CT scan. Neither showed any damage to the

pancreas. The gastro felt that pancreatitis (his first thought when

I consulted him, especially as my mother had died of acute

pancreatitis after many years of CP) did NOT explain my symptoms. In

fact he went on to make what it now seems was a misdiagnosis of

coeliac disease.

It's a long and boring story as to why there has been a long delay,

but the relevant thing is that last year I had another CT scan and

this time, 15 years later, it DID show up atrophy and extensive

calcifications throughout the pancreas.

I am NOT saying this to frighten you! Calcifications often don't

happen. (In any case, I actually usually feel better these days,

with enzyme treatment and low fat diet, than I did a year ago and

hugely better than in 1988.) I am merely pointing out that it is

certainly possible to have CP without actual damage to the pancreas

being visible on such tests. Indeed, I had no signs of

malabsorption, which would indicate that the pancreas was no longer

functioning properly from the digestive point of view, until I was

in my late 30's. Yet I had a couple of severe attacks a year as a

child and adolescent and into my 20's and early 30's. In between

these attacks I was absolutely fine. It took YEARS for first,

malabsorption and later, my calcifications and atrophy to occur.

It has to be said that CP is not the easiest condition to diagnose

but you do have some signs. The doc seems to be basing his view that

it might not be CP on the fact that there is no visible damage to

the pancreas. I have no medical qualifications whatsoever so I could

well be wrong but it seems to me that his view may not be correct.

If other symptoms indicate the possibility of CP, lack of evidence

from scans etc. is no reason, by itself, to reject the CP diagnosis.

There are other tests to look at digestive function and it might be

worth discussing these with your doc.

I do hope things get sorted out quickly for you. Once you have a

diagnosis, you can feel more settled and try the classic regime (low

fat, enzymes such as Creon, no alcohol, careful exercise,

antioxidants etc.) which can help a lot.

Hopefully your gall bladder op will help too.

Do take care.

With very good wishes,

Fliss (UK)