Re CP

[Guest guest]

Hi Suzy.

It's nice to talk to you. I don't know exactly what my specialist is

suggesting. I was diagnosed at Liverpool Royal Hospital a few months

ago (CT scan) and my gastroenterologist put me on a low-fat diet and

CREON. He also referred me to the pancreatic team at the Royal, led

by Professor Neoptolemos. I saw Prof N only last week. I spent

quite some time with him. He confirmed that it was hereditary

pancreatitis (I've had attacks of one kind or another since I was a

little girl amd my mother had pancreatitis.) I've had a genetic test

done to see if I have the known gene mutation for HP but I haven't

had the result yet. He advised surgery for a number of reasons but

did not pressurise me in any way. I am 57 and have had this disease

for 53 years!! I was only about 4 when I had my first attack of bad

pain. The length of time I've had the illness could cause serious

problems, I think. That's why he thinks I'd be better without the

pancreas. We haven't discussed details. I'm going to France for

three weeks next week, all being well. I'll try to see him as soon

as poss when I return. He quadrupled my prescription of CREON and

that is helping. I would have to wait a few weeks anyway because I

have been on a gluten-free diet for 14 years since I was diagnosed

with coeliac disease in 1988. Prof N. thinks that was probably a

wrong diagnosis and advised me to try to reintroduce gluten and see

how I react. I've just started to do that. I'd want to sort all this

out before contemplating surgery. I know one person, now fit and

well, who had a pancreatectomy at the Royal but she is now diabetic

but controlling it well and is no longer in pain. I'm not sure if

they routinely do the islet cell transplants or not. I'll have to

ask. Sorry this is so long! I'm still stunned about the diagnosis,

shocked etc. and needing to talk to fellow-sufferers.

I wish the very best to every single person using this website.

Thank you all! Felicity