Re: Re Becky's questions about Total Pancreatectomy

[Guest guest]

>

> What about those who can not do the islet transplant?

> What problems do they have after a total

> pancreatectomy?

> Thanks,

> Becky

Again, others who have been through this procedure will probably

respond, and are more qualified to speak from their direct

experiences. You will find the outcomes run the gamut.

If you were not a diabetic before the pancreatectomy, and you

undergo that without the islet cell transplant (actually " transfer " ),

you will definitely become a diabetic. There has been lots of

discussion about becoming a " brittle diabetic " , meaning it is much

more difficult to control than a " normal diabetic " (whatever that

is), with wildly varying swings in blood glucose levels, etc. Dr.

Sutherland was asked about that during the Symposium, and he said

that in his experience, the degree of difficulty in managing diabetes

after a pancreatectomy varies from patient to patient. Some patients

who become diabetic will have a much harder time of managing that

disease than others, but he feels it is unrelated to whether they

have the pancreas removed or not (assuming the pancreas is already

not doing its endocrine function due to pancreatitis). In the

general population of diabetics who do NOT have pancreatitis at all,

some are " brittle " , and some are not, and those same percentages are

seen in patients who undergo the pancreatectomy. He stressed that

having the pancreatectomy is not a " guarantee " for becoming

a " brittle " diabetic, and in his experience, patients who were

diabetic before the procedure usually are able to manage their

diabetes with about the same degree of success after the procedure.

For patients who DO (or already are) " brittle " diabetics, they can

offer either an entire pancreas transplant, or the allo (donor) islet

cell transplant.

The primary goal for the pancreatectomy for patients with chronic

pancreatitis who are already diabetic is to relieve/reduce the pain,

to the point where they can function normally without high doses of

narcotics. In Dr. Sutherland's experience, while all patients

experience SOME reduction in pain, and SOME patients experience

COMPLETE remission of pain, SOME patients will continue to experience

SOME level of pain for various reasons (scar tissue, permanent

neuropathic damage caused by years of chronic pancreatitis, etc), and

will never be 100% pain free. A lot of that seems to depend on how

long the patient lived with chronic pancreatitis (or repeated attacks

of acute pancreatitis), how many previous surgeries the patient has

already undergone, and other health problems totally unrelated to

pancreatitis.

THe bottom line is that while nearly all patients with chronic

pancreatitis will experience SOME reduction of pain after recovering

from the pancreatectomy, and some will experience complete remission

of pain, some will continue to experience some level of pain, and may

even continue to require to be on pain medications routinely

(although usually at a significantly reduced level). That is why

deciding on whether to have this operation is not necessarily a " no-

brainer " , even for those who may already be diabetic, and why it is a

decision that each patient must make for himself/herself, in close

consultation with knowledgeable physicians.

--Tull

Assistant Moderator

Pancreatitis Association, Int'l

[Guest guest]

> Tull,

> Thank you for that information. My husband is

> currently experiencing burnout. He is just positive

> that he has a much shorter life span than others.

> But, listening to all of you on here, that is not so.

> I appreciate your insight,

> Becky

Hi Becky,

Just curious about what your husband means by " burnout " ? That's

another term that gets discussed a lot in these groups, and came up

at the Symposium again this year. The theory is that, after " n "

years of chronic pancreatitis, the pancreas eventually will become

completely calcified, and no longer produce ANY digestive enzymes

(or, of course, insulin), and thus the organ will stop " auto-

digesting " itself, and then the patient will no longer experience any

pain. For many patients, this seems to be the best thing they have

to look forward to - that someday, after years and years of

suffering, the pancreas will just " burn itself out " , shrivel up to

nothing, and the pain will stop - and " all " that will be left is

dealing with diabetes, and having to take digestive enzymes, etc.

We currently have nearly 1,000 members registered on this board, many

of whom have been living with the diagnosis of chronic pancreatitis

for 10, 15, 20 years or more .... and I've never heard of anyone who

has actually experienced this stage of " final pancreatic burnout "

that results in no more pain. I'm sure it must happen sometimes for

some people, and of course, they are the ones who have no need to

seek out a support group like this. But I'm beginning to think that

for the majority of patients, if true " burnout " ever does occur, it

usually takes MUCH longer to get to that stage than we would like to

believe.

Of course, as others have also experienced, even that may not be a

TOTAL end to the pain, since even some patients who have the total

pancreatectomy still experience SOME pain after recovering from the

surgery. It is believed that may have to do with the fact that over

time, chronic pain can permanently damage the nerve fibres

surrounding the affected tissues and organs, so that even when the

damaged tissue/organ is removed (or " burns out " ), the nerve fibres

continue to " fire " , and the patient may continue to experience some

sensation of pain. Of course, there would be no more " accute

attacks " , and the the pain would hopefully be much more manageable,

etc, and nothing like the classic " pain from the sky " , as some here

describe it.

As far as life expectancy, as is evidenced by our many members who

have lived with this condition all their lives, or over half their

lives, etc, it is possible to live a " normal " life span with

pancreatitis, and even without a pancreas at all. Most of the deaths

that we know about are due to " complicating " factors - like

uncontrolled diabetes, or necrosis (infection) that may develop in

the " dead " portion of the pancreatic tissue, or cancers, or some

other opportune disease/infection due to a weakened immune system,

etc.

Of course, I will never forget Karyn's reaction to her doctor's

statement that she could, and most likely WOULD, live out a normal

life span in spite of her diagnosis of chronic pancreatitis.

Initially, it was practically worse to hear those words than it was

to think that at least her suffering wouldn't go on " forever " . And

some days, I'm sure it still feels that way for many patients - Karyn

included. That's why the shared experience, strength, and hope of

support groups like this one are so important - both for the patient,

and for the " care-givers " . And sharing the pooled knowledge and

experience is one of the important ways to help each other maintain

hope, which is probably one of the most important tools we have in

dealing with and coping with such a catostrophic and debilitating

condition.

Wishing peace and hope to all,

--Tull

Assistant Moderator

Pancreatitis Association, Int'l

Note: All comments and advice are personal opinion only, and should

not be substituted for a professional medical consultation