Re: NORMAL LEVELS, LOTSA PAIN

[Guest guest]

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Patty,

I don't have any answers for you and Cassie but I will tell you a little of my

story.

At this point I am being told I do not have CP, but have recurring acute

pancreatitis. My episodes began again in July of this year. They first began

in Jan 2000 and then I quit having them for about a year. The doctors are

insistent that my pancreas is actually perfectly healthy (according to the ct

scans, mrcp, etc. - they can't get to my pancreas via ercp because I have had a

gastric bypass and my intestines are routed differently). I have been in the

hospital 8 times since July and I have had so many episodes of the same severe

pain that I could not begin to count. My pancreas enzymes have only been

elevated 3 of the times that I was hospitalized. My liver enzymes have been

elevated with most of the episodes, but I've had a few where even my liver

enzymes were normal or close to normal. The doctors are insisting that the

real root of my problems is my bile duct and/or adhesions interfering with the

bile duct. My GI says it is adhesions. My general surgeon is insistent that

it is the bile duct itself. He says despite the fact that I had two

sphincterotomies via ERCP back in 2000, that he is positive that my bile duct

and/or sphincter of oddi is malfunctioning. He says that sometimes it only

malfunctions enough to cause me severe pain and nausea/vomiting; other times it

malfunctions enough to back the bile up and irritate the liver (thus elevating

the liver enzymes); other times it malfunctions enough to irrititate the liver

and pancreas (thus raising the liver and panc enzymes). He says the pain is

very real and the worst imaginable despite the sometimes normal lab work.

Unfortunately, he does not feel confident to do surgery on my bile duct, so

I've been referred to a biliary who will look at the ERCP films and repeat the

CT scan on Friday and decide if he can do anything to help me.

I don't know if any of this info applies to Cassie but I do know the pain is

real despite the lab work.

W.

[Guest guest]

I'm afraid there is no set time limit before the enzymes

stop elevating. For some, it starts quickly, for others, it

takes a long time. I know people who's enzymes have never

been elevated. It took me 30 years to have my enzymes stop

elevating. That's part of why it's so hard for doctors to

diagnose chronic pancreatitis, because it varies so much

between people and probably why Hopkin's website does

not mention how long it takes before the enzymes stop

rising.

Wish I had better news.

Kimber

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Kimber

Vallejo, CA

hominid2@...

Southwest and California Representative

Pancreatitis Association, International

[Guest guest]

Patty,

I've had them tell me the same thing for several years

before I was diagnosed with chronic pancreatitis. I'd

sometimes be in the ER or urgent care clinic several times

a week with it. Sometimes the stuff they gave me worked,

some times it didn't. Part of the problem is alot of these

ER physician have only had one weeks worth of education on

pancreatitis in medical school. That's all they teach about

pancreatitis. Anything additional is probably learned only

after the physician decides to specialize in pancreatitis.

And even some of them don't know about the amylase and

Lipase levels not elevating. You have my prayers that the

new GI is a knowledgable doctor or if not, an educable

doctor. Take the info from Hopkin's GI website with you

to the appointment and see if you can get this settle first

and then, if he agrees, get something in writing from him

that you can take with you to the ER when Cassie has another

attack. Or if you can set up a system where you call him

when she needs to go to the ER and he calls in the orders to

admit and give pain meds. Just some ideas that might or

might not work out. Hope Cassie has some pain free days

ahead of her.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Southwest and California Representative

Pancreatitis Association, International

[Guest guest]

Patty,

I've had them tell me the same thing for several years

before I was diagnosed with chronic pancreatitis. I'd

sometimes be in the ER or urgent care clinic several times

a week with it. Sometimes the stuff they gave me worked,

some times it didn't. Part of the problem is alot of these

ER physician have only had one weeks worth of education on

pancreatitis in medical school. That's all they teach about

pancreatitis. Anything additional is probably learned only

after the physician decides to specialize in pancreatitis.

And even some of them don't know about the amylase and

Lipase levels not elevating. You have my prayers that the

new GI is a knowledgable doctor or if not, an educable

doctor. Take the info from Hopkin's GI website with you

to the appointment and see if you can get this settle first

and then, if he agrees, get something in writing from him

that you can take with you to the ER when Cassie has another

attack. Or if you can set up a system where you call him

when she needs to go to the ER and he calls in the orders to

admit and give pain meds. Just some ideas that might or

might not work out. Hope Cassie has some pain free days

ahead of her.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Southwest and California Representative

Pancreatitis Association, International