Re: Mike's Surgery to Becky

[Guest guest]

Any ideas, or has anyone heard of this rapid damage before?

Dear Becky,

It's startling how rapidly damage can happen with some chronic

pancreas patients, and how slowly it goes with others. About a

year and a half after I was diagnosed with acute, then chronic,

pancreatitis with two pseudocysts which were found in May '01. I

left the hospital in March '03 as a type 1 brittle diabetic with

pancreas burn-out. The calcification had run rampant

throughout my pancreas in that very short period of time. I was

fortunate in the fact that for the first year or more after diagnosis I

had, what I felt, was minimal pain......... compared to the many

people who wrote of their problems here on the PAI message

board. I thought I had an easy time of it, then.

So all I can say is that it does sound right that it could happen

this quickly.....for certain individuals. Some of my doctors

theorize that my fast burn-out was feuled by my lapsing into

diabetic ketoacidosis. This condition developed rapidly and was

untreated for several months, resulting in traumatic damage.

Your statement confuses me:

" Mike had a cyst attached to his pancreas for draining.

Could he have somehow cut off the flow to the body and tail of

the pancreas when he attached the cyst to it? "

Don't you mean that he had a cyst attached to his pancreas that

was drained? One of my pseudocysts that had developed

during an acute attack that was already attached to my pancreas

was partially drained when I was first diagnosed. This helped

the pseudocyst to nearly resolve over a period of time. I have

never heard of a cyst being surgically attached to the pancreas

for draining, only of cysts that are already attached (like mine

was) as a result of an acute attack, being drained, which helps

them to resolve.

So perhaps if you could explain this further, it would be easier to

understand what actually happened.

But, in answer to your question as to whether anyone has heard

of this rapid damage before, my response is, without a doubt,

yes! It is very rare for this much damage to occur so quickly, but

I'm walking proof.

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.

" What lies behind us and what lies before us are tiny matters

compared to what lies within us. " - Ralph Waldo Emerson

[Guest guest]

Becky,

Thanks for your explanation. In answer to your question whether

this procedure could have caused the later damage to the tail

and then body of the pancreas, I'd have to suggest that you bring

that question up with the surgeon who originally performed the

procedure. But I would surmise that it's really either the cyst that

caused the destruction, or the natural progression of earlier

damage, NOT the procedure itself.

The areas around my two pseudocysts are filled in with

calification and hard as wood, one in the head, one in the tail.

This was not caused by any procedures, only by excellerated

progression of the disease. This has caused me to become a

brittle type 1 diabetic. Yet, to date, there has not been any

discussion of removal of my pancreas. In all truth, as long as I

continue like I am, I have been reluctant to consider surgery. It

isn't functioning, but it also hasn't caused me any more than

usual episodes of pain, which has been managed by my

duragesic patch and Percocet so far.

It is encouraging that your husband has not had diabetes

problems prior to this. If he is on insulin now, have you

discussed what to expect when he is released from the

hospital? I have heard of some people that were fortunate

enough to not lose all endocrine function even after partial

pancreas removal. It would be wonderful if that were to be the

case for your husband.

I wish I could be of more help with your question, but it's far too

much of a technical summarization for me to tackle. There's too

many unknown factors there, and I'm just another CP patient,

with no medical training whatsoever. His doctors would be the

ones to answer this question.

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.

" What lies behind us and what lies before us are tiny matters

compared to what lies within us. " - Ralph Waldo Emerson

..

[Guest guest]

Becky,

Vent all you need to. That's what we're here for, and believe me,

we truly do understand your frustration and now your concern for

your husband's state of mind. Depression is a common

symptom for many of us that are dealing with chronic illness on

a daily basis, and most of us have found that it's been necessary

to take antidepressants as prescribed by our physician's. If you

feel that Mike has reached the stage where he needs some help

copying with depression, please have him consult his physician

about this.

I have only had CP " officially " for 2 years, 4 months. It was

diagnosed in May of 2001, although the doctors suspect that I

probably had it up to a year prior to diagnosis, as I was having

abdominal pains, diarrhea and some vomiting, and definitely

high fat food and alcohol intolerances for several months prior to

my acute attack.

The reason we know the pancreas is hard in places is because

when it's palpated by my physician, it's hard in the tail and the

head. This spring I was very thin and had no excess fat in the

abdominal area, and it was felt by manual examination. My

abdomen then was so tiny then that my gallbladder was only 2

cm. from my outer skin surface. I have since gained 10 pounds

and it isn't quite so blatently obvious.

As I mentioned earlier, I've had 12 ct-scans in the last two years.

Each scan has shown more defined calcification. I obtained

copies of the radiology reports for each ultrasound, ct-scan and

MRCP every time I had them during the last two years, so I could

personally keep track of the progress. Then this year, I

requested all the photos (films) of each scan, ultrasound and

MRCP, over $600 worth of films. The progression of calcification

and any changes is evident in these films.

What I was trying to explain, Becky, is that for most people,

chronic pancreatitis takes a long time, usually several years,

before this type of damage is done, but there are those rare and

unusual cases, like Mike's and mine, where the progression is

much quicker.

This progression was missed by my former GI. As things were

deteriorating in January and complaining of pain 24/7 for weeks

on end, rapidly losing weight, having blurred vision, frequent

urination and excessive thirst, he kept telling me it was only side

effects from a new medication I was taking. It turned out to be

diabetic ketoacidosis, and it had been going on for months

before I ended up in Intensive Care. The final devastation to my

pancreas was done during those months when this doctor failed

to pay attention to my symptoms.

As for Mike's situation, it's really hard to say, and I think you need

to talk with his doctors more to find out why they think this

happened so fast. I know the shock is very hard to deal with,

because that's what I felt, too. But I knew I had to come to grips

with it and I personally chose to deal with it the best way I could,

and that was to look forward, not back.....to make the best of it

and to find out what I needed to do next to make my life better.

Any way you look at it, though, the depression is there for a good

reason and it has to be dealt with. I have found that getting

some medicinal help with the depression can make a helpful

difference in how I cope with my diseases. I hope you can get

some help for Mike, and yourself, to help you both cope with all

these changes.

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.

" What lies behind us and what lies before us are tiny matters

compared to what lies within us. " - Ralph Waldo Emerson