invariably progresses? more attacks?

[Guest guest]

My brother in law is doing well enough that I'm wanting to ask

about what's next. In particular,

Given the severity of his attack (which was his first--took

more than 2.5 months before he could do any real eating)...

IS it likely that his pancreas is in good enough shape still that he

probably won't have another attack?? Or at least might do this well for

6 mo.s or a year or two?? Or usually is the disease progressive

(even when patient takes care of her/himself)??

Here's what I know about his medical condition:

Dave's been back on food for maybe 1 1/2 weeks, he is not needing

insulin, he has eaten small amts. of well-trimmed steak, the doc has

pulled his pic line, his CT scan 2-3 weeks ago looked good (lg. drained

cyst had not returned), he is now walking around the house some w.o

walker.

I don't know if there are any tests that delineate pancreatic damage

and from that, give a prognosis in terms of future attacks.

I've a doctor cousin (but not a gi specialist) and he has said that

probably given how sick Dave was, the size of cyst, etc. and the

cause (drinking), plus such a slow recovery, probably alot of damage.

The disease seems to have its mysterious aspects.

There is wonderfully helpful stuff on the web, but not, so far,

as I can tell, about prognosis.

I suspect that really bad attacks lead to alot damage and therefore

set the stage for chronic pancreatitis and/or 'repeated acute attacks'

(which to me, sounds kinda like chronic).

Perhaps some of you have asked your doctors about this. Perhaps you've

seen some studies that I haven't.

I do think it would be very hard on all of us, but most esp. Dave

if he were to have another attack soon, esp. with my sister headed

down hill.

My instincts say that the doctors may not have mentioned

the possibility of another attack... my sister's family is less

proactive than I am. Definitely until recently we all worried that

if he had another set back he might not pull out of it... fortunately

there's been a big change in the positive direction.

But I can imagine how fragile one feels and IS after such a long and bad

attack.

So... I thought *I* should at least ask this question and get

whatever answer there is, in order for all us to be realistic and

prepare for the future. Son, daughter and I all live 500+ miles away.

As I said, esp because of my sister's illness. The attending physician

told me that yes it's possible we could lose her now -she has already

had blood clots and is on near 100% oxygen, but other than that, the

exact time course is unclear.

Ideally, her husband (Dave) is now getting well, well enough to help

care for her.

I would really appreciate your comments on what medically is known

about pancreatitis prognosis, in bad cases. (As opposed to most/many

patients where they just rest the pancreas for a week so and they are

out of the woods).

I assume something is known, in terms of likelihood

I would truly appreciate any info you folks have. Sorry to be

raising uncomfortable issues.

--

Sally

Sally L. Hobson, Ph. D.

mailto:hobson@...

http://www.adelphi.edu/~hobson

[Guest guest]

Dear Sally,

In reference to your question whether there were tests that were able

to access Dave's pancreatic damage and predict a prognosis of future

activity, there are some tests that can be done.

A Ct-scan of the abdomen and pelivs with contrast, an MRCP, MRI or

ERCP are all good diagnostic tools that usually can and do show what

kind of pancreatic damage has occured. I have had all of these

tests, except for the much dreaded and very invasive ERCP.

While the ERCP is considered the gold standard for accessing

pancreatic damge, it is held in reserve by many physicians because of

it's reputation for causing another pancreatitis attack. If any of

the other tests show any degree of pancreatic damage and the clarity

is enough to highlight the extent of calcification, blockage,

pseudocysts or other obstruction, the ERCP is usually unnecessary. If

surgical correction (such as stenting) is indicated, then an ERCP is

the procedure where this can be done.

Usually these tests will show the degree of damage, and some kind of

prognosis can be made. Yet this is a very individual process for

everyone. Even those who follow all the rules and do everything they

are supposed to do cannot predict when another attack will strike and

cause more damage. I use myself as an example. In spite of being a

model patient and following all the rules, in less than two years

from initial diagnosis of CP, the disease progressed to total

pancreatic burn-out, reemergence of two softball sized pseudocysts,

and a diagnosis of type 1 brittle diabetes after diabetic

ketoacidosis. No one could have predicted this, actually only three

months before the final outcome, I had been told that I was doing

extremely well and that my pseudocysts had almost resolved. I had

done nothing different to cause this disenegration of my pancreas.

It is possible, though, that Dave's damage is not that extreme.

Diagnostic imaging tests would show what kind of shape his pancreas

is in, and I'm surprised that his doctors have not ordered one of

these for follow up. What HAVE the doctor's recommended to Dave for

follow up? Has he been prescribed enzyme supplements? From the tone

of your letter, I am presuming that his doctors are treating this as

acute pancreatitis only. Has there been any discussion of chronic

pancreatitis with Dave? What kind of treatment, diet, follow-up,

etc., do the doctors plan?

Only time will tell how Dave does. It is imperative, though, that he

follow a low fat diet and abstain from any alcohol. I guess you all

know this. I have heard of some people who get to feeling really

good and after having no problems for many months, they think that

they're in the clear and it's " okay " to have just a little

alcohol...and that's when the worst things start to happen.

I am so very sorry about your sister, Sally. You are so good to be

so supportive and caring for all your family. It must be very

difficult for all of you to be so far away.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI, Intl.

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

should not be substituted for professional medical consultation.

> IS it likely that his pancreas is in good enough shape still that he

probably won't have another attack?? Or at least might do this well

for 6 mo.s or a year or two?? Or usually is the disease progressive

even when patient takes care of her/himself)??

I don't know if there are any tests that delineate pancreatic damage

and from that, give a prognosis in terms of future attacks.

The disease seems to have its mysterious aspects.

I would truly appreciate any info you folks have. Sorry to be

raising uncomfortable issues.

Sally