Re : How long can you live with this disease

[Guest guest]

Hi ,

I do sympathise. I am so sorry you are feeling depressed. It's very

natural with a chronic and painful condition. You have the right to

feel bad at times.

I am 58 and have had this disease since I was five years old. I do

know I have been fortunate because, as a child and in my younger

days my attacks, although very severe and lasting about a week at a

time, came only once or twice a year and didn't stop me living a

normal life for the other 50/51 weeks. My worst acute flare-ups came

frequently, virtually running into each other, when I was around 39 -

42. I lost a lot of weight and was ill pretty much all the time. I

just about hung on to my job. I had that coeliac diagnosis in 1988.

I eliminated gluten and, later, dairy produce. I was much better

then, probably because I was coincidentally eliminating a lot of fat

(eg. cheese and bread and butter and sauces) from my diet. It was

probably an incorrect diagnosis though.

A few years ago my old childhood type pain attacks came back but

this time lasting much longer. By 2002 I had bad pain for about a

third of the time and often felt pretty awful in between as well.

Last year a CT scan gave the diagnosis.

I have to say that I have responded well to Creon and the low-fat no-

alcohol diet but I still have a lot of bad days and live with the

fear of much more serious disease. Hereditary pancreatitis, which I

have, carries its own major risks.

So I do know about feeling depressed. I live with worry every single

day. I do know that we can never count on being able to do things as

others can. I know I will be the " odd one out " when I go out with

friends or family because I have to think carefully about everything

I eat and I can't have a drink. I am lucky in my friends and family;

they understand. I even have to choose a restaurant when going out.

BTW, to answer your question about alcohol. My CP was not caused by

alcohol but it is a known cause of irritation to the pancreas. My

pancreas specialist told me he could not sanction any alcohol at

all. My gastroenterologist shrugged his shoulders and said it was up

to me if I had a very occasional celebratory drink. (This was in

answer to a question my husband had put to him.) He added,

" It's your body.... " !!!!! So, clearly, he too was saying alcohol is

a no-no. I NEVER break the alcohol rule. That's because I'm scared

and don't want to exacerbate things.

, it's difficult for me to talk about travelling, seeing

things, socialising, etc. because I don't know what you are able to

do. I have decided to do whatever I can while I still can. It's not

as much as I would like. I know I will never again go far from

cities because of the fear of being taken ill. I would worry in a

country whose language I don't speak. (That's most countries,

obviously!!) I know that pain can still spoil any occasion for me. I

take my codeine/paracetamol tablets everywhere in case I need them;

I frequently do, just to keep going. The joy of foreign cuisine and

wine is a thing of the past but I try to enjoy all the other

pleasures as much and when I can. I still work and for me it's a

wonderful therapy. I know that at any moment I could find myself

unable to do anything.

, I have just rambled and said nothing useful but I really do

sympathise. My husband is 60 and not in the best of health himself.

I know what you mean about not having a real life. I also know I am

lucky compared to some in the way the disease affects me. I NEVER

want to sound as if I am preaching. No two of us are alike. I can

only listen and say I understand and perhaps suggest grasping

nettles and doing just as much as you possibly can. I even think

your decision on drink must be your own. We all have hard decisions

to make and will make them to ensure the best life-experience

possible FOR US. For the moment I have rejected the TP even though I

know I am in a very high-risk category for pancreatic cancer. Just

now I prefer to live for just now! Someone else might think I was

foolish to live with that risk. I have to make the best decision I

can, as you do.

Please feel free to e-mail me any time to chat. I do have " end-

stage " pancreatitis but I take that to be descriptive of the state

and functioning of my pancreas rather than meaning my life is

automatically at an end! After all, one can live without a pancreas

at all as well as with one that doesn't function any more. The pain

is another matter, of course.

I'm afraid I don't remember all your current options. Perhaps you

could remind me?! Sorry for forgetting!

I do hope you are feeling abit better now.

With my heartfelt sympathy and very good wishes,

Fliss (UK)