hello again, been away awhile,have????s

October 26, 2002

Hello, this is . I have chronic pancreatitis and a brain

tumor. I have been away awhile and would like to say hello to all .

I have a ? for any of you that may be able to help. I had a whipple

done in 98 due to pseudocysts that formed during ERCP. I wore drain

bags hoping the cysts would close up, the bags were worn for 13

months but only 2 of the 5 cysts would close and my pancreas was

actually split in half.

Shortly following the whipple my levels of course were elevated,

however now I have chronic daily pain even though I take oxycontin

80mgs every 8 hours. My Family Dr. has had me on this dose for over a

year. I think it needs to be increased but it was very hard to get

the Dr. to put me on this large of a dose in the first place. I am

very greatful that he has at least helped me more than the Gastro Drs

would. They just wanted to wash their hands of me when they realized

that I was CHRONIC.

Anyway, my ? is this, is there anyone out theirthat has has a whipple

and are your amalyse or lipase high now that you have had this

surgery. The reason I am asking is that now even when my pain is

tremendous, the ER or whomever is seeing me will run these tests but

for the past year my levels are never elevated therefore causing the

Dr. tothink I am exagerating about my pain. I have only had my levels

elevated one time since the surgery. Therefore it is very hard for me

to get a Dr. to take my pain seriously, for some reason even though I

am telling them my pain is at a 500 on a scale of 1-10.

I had a caring Dr. once at an urgent care who told me he has several

patients with chronic panc. and that eventually your levels do not

increase because your pancreas is burned out but that does not mean

that your pain is not increased. He also explained that since half of

my pancreas has been removed that now when my levels are tested that

what ever they read should be doubled because if I had my entire

pancreas that is what the levels would be. Anyone understand this?????

I just wish that I could get the ER and urgent care to take me

serious when I am there begging to be hospitalized for pain control.

However if my levels are never elevated how do I get them to take my

pain seriously???

Any ideas would be greatly appreciated.

Hoping for us all to have a pain free future.

Your friend, , WAshington

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