Re: Can you have pancratitis and doctors can't figure it out?

[Guest guest]

When I had the acute attack that landed me in St. Joes, they did an

ERCP and found absolutely nothing. My enzyme levels were sky high

and they knew what was wrong...they just couldn't see anything.

When I finally had an ERCP at U of IC the doctor found a stone

larger than a marble. How did St. Joe's miss it? Well, the doctor

there did not shoot the contrast in hard enough to show it. We were

shown the two films side by side and informed of the difference.

Even my non-medical eye could see clearly what Dr. Brown was talking

about.

I don't know how they can find anything without the contrast. I am

not recommending it. I just am quizzical about it. Planet Carol

growing inside me did not show up without it.

Anyone?

Carol

[Guest guest]

Hi Carol,

Well, my enzymes..by enzymes I assume you mean lipase and I forget

the other one...they are not elevated according to the doctor. And I

didn't have an ERCP, I had an MRCP which is just like a cat scan more

or less. I don't have a fever or nausea or vomiting. Just mild to

moderate pain, pulsating and some bloating and gas. So when you say

acute attack, you must have had acute symptoms and the elevated

enzymes to indicate there was a problem, and I don't have those.

Therefore, they are not inclined to do any further testing and are

suggesting that the pain may be unrelated to the gallbladder attack.

When you had an acute attack, were you seen in the hospital the same

day the symptoms started? Did they keep you in the hospital and on

IV with nothing by mouth? If so, for how long? Once you got the

positive ERCP, were they able to dislodge the gallstone while doing

the test? Was that the one and only attack you had and did you

recover afterward or did it become chronic?

Well, my doc is away until Monday and the earliest I can see the

surgeon is Tuesday, so I don't know what to do for myself in the mean

ime. I tried just a few spoonfuls of tomato soup and it started it

up again. I can't go 5 days on water. I was thinking of trying to

get by with mostly gatorade, but I have to get ready for surgery and

if I am not able to eat, then by the time I have the surgery I am

going to be in bad shape as I have some other underlying medical

conditions.

Adam

>

> When I had the acute attack that landed me in St. Joes, they did an

> ERCP and found absolutely nothing. My enzyme levels were sky high

> and they knew what was wrong...they just couldn't see anything.

>

> When I finally had an ERCP at U of IC the doctor found a stone

> larger than a marble. How did St. Joe's miss it? Well, the doctor

> there did not shoot the contrast in hard enough to show it. We

were

> shown the two films side by side and informed of the difference.

> Even my non-medical eye could see clearly what Dr. Brown was

talking

> about.

>

> I don't know how they can find anything without the contrast. I am

> not recommending it. I just am quizzical about it. Planet Carol

> growing inside me did not show up without it.

>

> Anyone?

>

> Carol

[Guest guest]

Hi Adam,

The answer to your question is yes and no. Theoretically, you

cannot have an acute pancreatitis attack without the doctors

figuring it out. But in reality it does happen (I was one of those).

In chronic pancreatitis it is very easy for the doctors to miss it and

basically it is because there are no or few labs tests to detect it

and all the imaging tests are not sensitive enough to find early

stages of CP. Most of the time the diagnosis of CP is one of

exclusion and part of the exclusion criteria is to eliminate the gall

bladder as a source of abdominal problem. And I think that is

where you are at, from what you wrote. The only way to implicate

or exclude your gallbladder as the source is to remove it. And if

after removal you get better, then it is presumed that that was the

cause. If you stay the same or get worse, then they go to the next

level of diagnosis which means looking more closely at the

pancreas. Your symptoms are general enough that they are

consistent with either gallbladder disease or pancreas disease

but statistically, it is more likely to be gallbladder disease than

pancreas so it is more efficient to treat that first.

The HIDA scan (for the functioning of the gallbladder) is another

good diagnostic tool for when the gallbladder is greatly impaired

but again, it has limitations for a only slightly impaired

gallbladder. And even then there are " false negatives " that is, the

HIDA shows no problem with the gallbladder but upon surgery

the surgeon finds a highly diseased gland. So a negative HIDA

scan doesn't always mean a healthy gallbladder. The only sure

way is to do the surgery. Drastic but that is the way it is done.

Unfortunately, you are right in that because you are not an

emergency (you are not feverish, or show signs of an infection)

they are not going to rush you into surgery. The best way to

handle the wait is to get some pain pills so you can eat with

reduced pain. Basically it took them 6 months from my initial

symptoms to do the gall bladder surgery...than another two years

after that surgery for them to investigate the pancreas and find

that this was the source all along. And during that first year I lost

50lbs from not eating or only eating simple foods. However,

during that time, I was supplied with pain meds to help the

eating discomfort. It wasn't the perfect solution but it did get me

by.

Personally, from my experience, I think that you are on the right

track for getting to the bottom of the problem and the fact that you

are limited by not using contrast in the CT scans, etc may be

hindering the whole diagnostic process. And depending on

what type of MRCP they did, pancreatic problems may have been

missed. I had a regular MRCP done, no CCK stimulation or

Secretin and that came up normal; however two years later when

they did the MRCP-CCK to stimulate the ducts the pancreas

problem became evident. And it was something that had been

there my whole life, a birth defect. So they couldn't explain it away

as a new development that arose after my first MRCP. Basically

the diagnosis for biliary and pancreas diseases are not easy,

clear cut or simple.

Try to eat higher calorie food that is low in fat....or spread it out

over the day. That is the only suggestion I have from the eating

standpoint. I drank lots of ensure. If you can mix it with icecream

to make a shake, that will help. Again, going without food isn't as

drastic as you think. Physicians are not concerned about not

eating until the patient goes about 7 days without food. However,

not getting liquids is a big concern. In the hospital, if you will be

without food for less than seven days and are otherwise healthy

they only suplement with IV fluids. If on the otherhand you will be

without food for more than seven days, or have a medical

condition that puts you at risk, they will give you TPN or other food

supplements. So although we may think that not eating is

critical, the body seems to get through it.

I hope this helps somewhat..........

Laurie

[Guest guest]

Hi Laurie,

Yes, you are right. That is about the path I am on. It has been

decided to do just that. Have the surgery, take out the gallbladder

and see if that takes care of all the symptoms and go from there. I

was able to get a surgical date for 11 days from now. I know that is

pretty quick considering he was booking into October.

I had the HIDA scan in the ER last Friday. It showed that the " bile "

is able to go from the liver into the gallbladder and from there into

the small intestine, so it is not completely blocked or

nonfunctional. The second part of the test showed what they call an

ejection fraction, which measures the force of contractions. Since

it is known I have a large gallstone, the test results did indicate a

low number which they termed " sluggish gallbladder " . So I know it

doesn't mean my gallbladder is healthy, and could show surprises, but

I do know there has been a large gallstone there for a long time

which has been symptomatic and needs to be taken out. But at least

it didn't show a complete blockage and a back up of bile to whereever

it goes when there is a blockage.

Sounds like you have had an awful time of it. I am sorry to hear

that. 50 pounds is a lot to lose. I find it hard to believe that

under a doctor's care, they would watch you lose that much weight and

not figure a way to diagnose it quicker than that. Geez!

As for the MRCP..I didn't know they could do a CCK stimulating test

with that. I haven't read that anywhere I have been looking. Thanks

for that info. Hopefully the gallbladder surgery will take care of

it and I won't have to go that route and more.

As for going without food...unfortunately, for me going without food

is very detrimental. I have an underlying condition that is made

worse by fasting. I also am not in the best physical condition and

had surgery a year and a half ago, that I had a very difficult

recovery time from. The condition I am in, when I have the surgery,

will be important. Otherwise, I would just tough it out, no problem.

Over the past week, I have eaten and did ok and then not done ok. So

I have kept trying, whenever it would calm down. It just seems to be

worse today after eating more yesterday. I have been eating no fat

for quite awhile and when it is at it's worse, I just go back to

liquids, but even that today is a problem. I did try a shake last

night before bed and I think that is what made things worse.

Yes, I realize that they could put me on TPN and I am going to talk

to my doc about that today. If it wasn't such a cost and

inconvenience to be put into the hospital just to be put on TPN, I

would think that would be a pretty good solution. Quicker surgery

would be better, but that would be pretty good. I wonder if they

could put me on it outpatient at his office? I am going to ask

anyway.

Well, thanks for all that input. You have helped me to think through

where I am at. I will let you know how it works out.

:-)

Adam

> Hi Adam,

>

> The answer to your question is yes and no. Theoretically, you

> cannot have an acute pancreatitis attack without the doctors

> figuring it out. But in reality it does happen (I was one of

those).

> In chronic pancreatitis it is very easy for the doctors to miss it

and

> basically it is because there are no or few labs tests to detect it

> and all the imaging tests are not sensitive enough to find early

> stages of CP. Most of the time the diagnosis of CP is one of

> exclusion and part of the exclusion criteria is to eliminate the

gall

> bladder as a source of abdominal problem. And I think that is

> where you are at, from what you wrote. The only way to implicate

> or exclude your gallbladder as the source is to remove it. And if

> after removal you get better, then it is presumed that that was the

> cause. If you stay the same or get worse, then they go to the next

> level of diagnosis which means looking more closely at the

> pancreas. Your symptoms are general enough that they are

> consistent with either gallbladder disease or pancreas disease

> but statistically, it is more likely to be gallbladder disease than

> pancreas so it is more efficient to treat that first.

>

> The HIDA scan (for the functioning of the gallbladder) is another

> good diagnostic tool for when the gallbladder is greatly impaired

> but again, it has limitations for a only slightly impaired

> gallbladder. And even then there are " false negatives " that is, the

> HIDA shows no problem with the gallbladder but upon surgery

> the surgeon finds a highly diseased gland. So a negative HIDA

> scan doesn't always mean a healthy gallbladder. The only sure

> way is to do the surgery. Drastic but that is the way it is done.

>

> Unfortunately, you are right in that because you are not an

> emergency (you are not feverish, or show signs of an infection)

> they are not going to rush you into surgery. The best way to

> handle the wait is to get some pain pills so you can eat with

> reduced pain. Basically it took them 6 months from my initial

> symptoms to do the gall bladder surgery...than another two years

> after that surgery for them to investigate the pancreas and find

> that this was the source all along. And during that first year I

lost

> 50lbs from not eating or only eating simple foods. However,

> during that time, I was supplied with pain meds to help the

> eating discomfort. It wasn't the perfect solution but it did get

me

> by.

>

> Personally, from my experience, I think that you are on the right

> track for getting to the bottom of the problem and the fact that

you

> are limited by not using contrast in the CT scans, etc may be

> hindering the whole diagnostic process. And depending on

> what type of MRCP they did, pancreatic problems may have been

> missed. I had a regular MRCP done, no CCK stimulation or

> Secretin and that came up normal; however two years later when

> they did the MRCP-CCK to stimulate the ducts the pancreas

> problem became evident. And it was something that had been

> there my whole life, a birth defect. So they couldn't explain it

away

> as a new development that arose after my first MRCP. Basically

> the diagnosis for biliary and pancreas diseases are not easy,

> clear cut or simple.

>

> Try to eat higher calorie food that is low in fat....or spread it

out

> over the day. That is the only suggestion I have from the eating

> standpoint. I drank lots of ensure. If you can mix it with icecream

> to make a shake, that will help. Again, going without food isn't as

> drastic as you think. Physicians are not concerned about not

> eating until the patient goes about 7 days without food. However,

> not getting liquids is a big concern. In the hospital, if you will

be

> without food for less than seven days and are otherwise healthy

> they only suplement with IV fluids. If on the otherhand you will be

> without food for more than seven days, or have a medical

> condition that puts you at risk, they will give you TPN or other

food

> supplements. So although we may think that not eating is

> critical, the body seems to get through it.

>

> I hope this helps somewhat..........

>

> Laurie

[Guest guest]

" When you had an acute attack, were you seen in the hospital the

same day the symptoms started? "

I actually was stupid enough to stay home during the first two

attacks. They hit hard and were one right after the other. They

were really awful but I figured I was failing of advanced cancer and

did not want to die in the hospital. What a relief to hear I only

LOL had pancreatitus. My doctor bullied me into going into the

hospital as he lectured me about acute turning into chronic. I hate

it when they are right. My symptoms were quite clear and obvious to

the doctor.

Wish I had known about this last year. I would be good deal further

along the recovery path. I still blame my mother's pumpkin pie at

Thanksgiving even though I know what really caused it. That yummy

custard pie was the last straw for the good old panky.

Keep reading the forum. I saw some awesome responses to your post.

This group is the best thing that has happened to me since my first

attack. That, a good guy in my life, a medical plan that is being

great and private disability keep me going.

Just keep fighting for your health.

With sincerity,

Carol

[Guest guest]

Laurie wrote,

The answer to your question is yes and no.(snip) Most of the time the

diagnosis of CP is one of exclusion and part of the exclusion criteria is to

eliminate the gall bladder as a source of abdominal problem.

(snip) The only way to implicate or exclude your gallbladder as the source is

to remove it. And if after removal you get better, then it is presumed that that

was the cause. If you stay the same or get worse, then they go to the next

level of diagnosis

(snip) Physicians are not concerned about not eating until the patient goes

about 7 days without food. However, not getting liquids is a big concern.

Laurie,

What an excellent and thoughful answer. You summed it up thoroughly.

Great job!

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI

Note: All comments or advice are based on personal experience or opinion

only, and should not be subsituted for consultation with a medical

professional.