Re : Can anyone please help?

[Guest guest]

Hello there Jen,

I'm sorry you are going through such a difficult time. I don't have

personal experience of your particular problem but I do want to

offer a word of genuine sympathy and reiterate what others have

said. Chronic pancreatitis is a rare condition and it is well worth

finding a pancreatic expert. Even good gastroenterologists spend a

limited amount of time on pancreatic diseases; you really need that

expert advice. I hope Mayo will prove fruitful.

There are several websites where you can read about the different

procedures and treatments which are available at the moment and

their suitability for different types of pancreatic disease or

condition. You can find a list of links on the PAI home page. The

hopkins site is very good, for example.

Of course I could be wrong but I guess many docs would think it too

early to think about a TP yet. Perhaps you need to exhaust the

stenting possibilities first and then look at other ways of tackling

the drainage problem, as Laurie explains. On the other hand, it may

be that, in the end, you will need to look at pain management as

many patients still have some degree of pain to cope with, at least

from time to time, even when the best current practice has been

applied. To echo what Kimber said, one of the professors in our

pancreatic team in Liverpool told me the other day that, although

knowledge was much more advanced now than a few years ago, they

still know very little about the pancreas and how best to deal with

its diseases. Yet Liverpool is one the major European centres for

pancreatic treatment, surgery and research.

This is not to depress you. Many patients experience fantastic

relief from stenting or appropriate surgery. Probably you will need

to travel to find the necessary experts and you will need to be

patient while the best options are found.

In the meantime, please know that we do sympathise and understand.

You are young enough to benefit from future advances as well,

hopefully. For example, the TP/ICT option will become safer and

safer and more and more successful, I'm sure. Don't lose heart. I am

58 and have had CP all my life, although only diagnosed finally last

year. I now have advanced end-stage pancreatitis but even I have had

significant relief from the treatment and diet regime which was

suggested last year and which I have tried to follow faithfully. I

am not trying to make comparisons between two very different cases,

just encouraging you not to lose heart. I'm sure things will improve

for you. Most of us have had very bad times along the way or are

still going through them so at least you know we do understand how

you feel.

Do take care and let us know how you get on.

With good wishes,

Fliss (UK)