Re: Progressive pancreatitis

[Guest guest]

Patty,

Unfortunately, over time, the disease does progress and it gets harder

and harder to eat anything with fat in it. It's best to stay on a low

fat/no fat diet. I can't eat more than 20-25 grams of fat per day,

usually about 6 grams or less per meal/snack. Also, fatigue is a common

symptom of chronic pancreatitis and it becomes very difficult to do any

exercise.

As for how bad your pancreatitis, it is hard to tell. Everyone

progresses at a different rate as this is a very individualist disease

and it affects everyone differently. I know mine has progressed very

slowly (over a minimum of 16 years), while others have reached the same

point as me or farther along, in only a few years. Have you made an

appt with the ERCP specialist to see what he/she says about your case?

And it is quite common for people with chronic pancreatitis to have

normal or below normal amylase and lipase levels with an acute attack.

Check out the first sentence on this web page from Hopkin's GI

website:

http://www.hopkins-gi.org/pages/latin/templates/index.cfm?pg=disease3 & organ=4 & di\

sease=24 & lang_id=1 & pagetype=10 & pagenum=254

(if this link doesn't work, copy and paste the whole string into your

web browser, including anything that wraps to the next line)

This should help you explain to the ER doctors why you feel you are

having an acute attack with normal levels: ie. you are having increased

pain, vomiting, diarrhea, etc - all the symptoms of an acute attack.

You might want to print this webpage out to show them when these attacks

occur.

I'm afraid I can't help you much about the stents. They tried to put

some in for me and my ducts were too small for even their smallest stent

to be put in. That was part of what was causing my pancreatitis (I have

pancreas divisum - divided pancreatic ducts and my ducts are too small

as well).

Kimber

--

Kimber

Vallejo, CA

hominid2@...

California and Southwest US regional representative

Pancreatitis Association, International

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.

[Guest guest]

Hi Patty,

We have all been there with the ER doctors not understanding about amylase &

lipase not elevating. It is really frustrating. I have found that if I tell

them from the get go that I have chronic pancreatitis and the my a & l's don't

elevate that it does seem to help. In the ER where I live the nurse comes in

before the doctor, I tell her before she even gets the needle in my arm for

the labs. The more knowledgeable you are about the disease the better. Just a

suggestion and I hope it is of some help.

Sending lots of happy thoughts your way....

Marisa ~ San Diego, CA