Re : My stage of CP

[Guest guest]

Hi ,

I can understand that you are worried but do take heart.

I was going through the worst stage of my CP, in terms of pain and

other symptoms, when I was about your age and am now 58. (I'm not

saying the two cases are the same but just that things can change.)

If you have had two months pain-free, there is hope that the pain

can be controlled again in different ways. Your doc is correct about

the Whipple because it does not involve removal of the whole

pancreas. It is generally thought inadvisable to have a total

pancreatectomy until other avenues of controlling pain have been

tried. Maybe your doc thinks that better pain control is the way

forward at the moment.

There is another point worth making. When the disease is very

advanced, it can happen that " burn-out " occurs, at which point the

pain does become significntly better. It doesn't always happen but

it is a possibility although it usually takes a long time to reach

that point. My gastro has said that I may be reaching that point

now.

I would advise you to look carefully at pain management, as Heidi

says. I can't remember who your specialist is but it's worth finding

a pancreatologist if possible because they are very focussed experts

on precisely our problems. I apologise for mentioning this if you

already have an experienced specialist.

You can also be researching the TP option to be ready if that turns

out to be the best idea for you. It is certainly there for patients

who cannot achieve pain-relief in other ways.

Please don't lose hope! I have had this disease for 55 years! This

very day, someone has been in contact with me who had a first attack

at the age of 7 and is now mid-40's. I know of others who have had

CP for a very long time indeed.

I haven't said anything very useful but I think it's worth hanging

on in there for better control. I know just how disheartening it is

when the pain starts again after a the relief of a break. You can't

believe it, can you? I think pain-free times could come again. I

hope it's very soon!

With very good wishes,

Fliss (UK)