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

[Guest guest]

Hi ,

I wish I could be more optimistic, but about all you can really do is shop

around for a sympathetic Gastroenterologist or pain physician who

understands pancreatitis and will work with you on your pain levels.

Unfortunately, I had to do the same thing, although I do not have pancreas

divisum. There are people out there who will help, but finding them can be a

challenge.

Jerry/NC

************************************

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

> 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

>

>

>

> PANCREATITIS Association, Intl.

> Online e-mail group

>

> To reply to this message hit & quot;reply & quot; or send an e-mail

to: Pancreatitis (AT) Yahoo

>

>

[Guest guest]

Hi ,

I wish I could be more optimistic, but about all you can really do is shop

around for a sympathetic Gastroenterologist or pain physician who

understands pancreatitis and will work with you on your pain levels.

Unfortunately, I had to do the same thing, although I do not have pancreas

divisum. There are people out there who will help, but finding them can be a

challenge.

Jerry/NC

************************************

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

> 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

>

>

>

> PANCREATITIS Association, Intl.

> Online e-mail group

>

> To reply to this message hit & quot;reply & quot; or send an e-mail

to: Pancreatitis (AT) Yahoo

>

>

[Guest guest]

Hi ,

I wish I could be more optimistic, but about all you can really do is shop

around for a sympathetic Gastroenterologist or pain physician who

understands pancreatitis and will work with you on your pain levels.

Unfortunately, I had to do the same thing, although I do not have pancreas

divisum. There are people out there who will help, but finding them can be a

challenge.

Jerry/NC

************************************

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

> 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

>

>

>

> PANCREATITIS Association, Intl.

> Online e-mail group

>

> To reply to this message hit & quot;reply & quot; or send an e-mail

to: Pancreatitis (AT) Yahoo

>

>

[Guest guest]

thank you Jerry for your response. Unfortunatly I live in a very

small town and the only GI around are jerks to me and I can not find

any pain Dr that is wiling to treat me the way I need to be treated.

All that I have seen so far just want to label me as drug seeking,

which I will not deny that I am a drug seeker because that is the oly

thing that helps my pain.

Anyway maybe someone out there knows a good GI or pain management Doc

in Washington and can let me know. I would appreciate it very much.

, WA

> Hi ,

>

> I wish I could be more optimistic, but about all you can really do

is shop

> around for a sympathetic Gastroenterologist or pain physician who

> understands pancreatitis and will work with you on your pain levels.

> Unfortunately, I had to do the same thing, although I do not have

pancreas

> divisum. There are people out there who will help, but finding them

can be a

> challenge.

>

> Jerry/NC

> ************************************

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

>

>

> > 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

> >

> >

> >

> > PANCREATITIS Association, Intl.

> > Online e-mail group

> >

> > To reply to this message hit & quot;reply & quot; or send

an e-mail

> to: Pancreatitis@Y...

> >

> >

[Guest guest]

thank you Jerry for your response. Unfortunatly I live in a very

small town and the only GI around are jerks to me and I can not find

any pain Dr that is wiling to treat me the way I need to be treated.

All that I have seen so far just want to label me as drug seeking,

which I will not deny that I am a drug seeker because that is the oly

thing that helps my pain.

Anyway maybe someone out there knows a good GI or pain management Doc

in Washington and can let me know. I would appreciate it very much.

, WA

> Hi ,

>

> I wish I could be more optimistic, but about all you can really do

is shop

> around for a sympathetic Gastroenterologist or pain physician who

> understands pancreatitis and will work with you on your pain levels.

> Unfortunately, I had to do the same thing, although I do not have

pancreas

> divisum. There are people out there who will help, but finding them

can be a

> challenge.

>

> Jerry/NC

> ************************************

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

>

>

> > 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

> >

> >

> >

> > PANCREATITIS Association, Intl.

> > Online e-mail group

> >

> > To reply to this message hit & quot;reply & quot; or send

an e-mail

> to: Pancreatitis@Y...

> >

> >

[Guest guest]

thank you Jerry for your response. Unfortunatly I live in a very

small town and the only GI around are jerks to me and I can not find

any pain Dr that is wiling to treat me the way I need to be treated.

All that I have seen so far just want to label me as drug seeking,

which I will not deny that I am a drug seeker because that is the oly

thing that helps my pain.

Anyway maybe someone out there knows a good GI or pain management Doc

in Washington and can let me know. I would appreciate it very much.

, WA

> Hi ,

>

> I wish I could be more optimistic, but about all you can really do

is shop

> around for a sympathetic Gastroenterologist or pain physician who

> understands pancreatitis and will work with you on your pain levels.

> Unfortunately, I had to do the same thing, although I do not have

pancreas

> divisum. There are people out there who will help, but finding them

can be a

> challenge.

>

> Jerry/NC

> ************************************

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

>

>

> > 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

> >

> >

> >

> > PANCREATITIS Association, Intl.

> > Online e-mail group

> >

> > To reply to this message hit & quot;reply & quot; or send

an e-mail

> to: Pancreatitis@Y...

> >

> >

[Guest guest]

Hi ,

Yes, unfortunately, a lot of us are in that boat. There are quite a few

people who drive 4 or 5 hours to get decent medical care. I wish I could be

more encouraging, but I can't. If you cannot travel out of your area to get

the care you need, there is no way you will get around your issues with

these physicians. You will just have to live with it.

All of us here have been labled as drug seekers at one time or another. With

today's political climate and constant DEA harassment of doctors, there is

no getting around it. I'm sure you'll learn to live with it as we have and

find reputable physicians who understand and care about your pain.

Best of luck in your search. Things will work out for you as they have for

the rest of us. Keep your chin up. We'll help you any way we can.

Jerry/NC

**********************************

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

> >

> >

> > > 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

> > >

> > >

> > >

> > > PANCREATITIS Association, Intl.

> > > Online e-mail group

> > >

> > > To reply to this message hit & quot;reply & quot; or send

> an e-mail

> > to: Pancreatitis@Y...

> > >

> > >

[Guest guest]

Hi ,

Yes, unfortunately, a lot of us are in that boat. There are quite a few

people who drive 4 or 5 hours to get decent medical care. I wish I could be

more encouraging, but I can't. If you cannot travel out of your area to get

the care you need, there is no way you will get around your issues with

these physicians. You will just have to live with it.

All of us here have been labled as drug seekers at one time or another. With

today's political climate and constant DEA harassment of doctors, there is

no getting around it. I'm sure you'll learn to live with it as we have and

find reputable physicians who understand and care about your pain.

Best of luck in your search. Things will work out for you as they have for

the rest of us. Keep your chin up. We'll help you any way we can.

Jerry/NC

**********************************

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

> >

> >

> > > 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

> > >

> > >

> > >

> > > PANCREATITIS Association, Intl.

> > > Online e-mail group

> > >

> > > To reply to this message hit & quot;reply & quot; or send

> an e-mail

> > to: Pancreatitis@Y...

> > >

> > >

[Guest guest]

Hi ,

Yes, unfortunately, a lot of us are in that boat. There are quite a few

people who drive 4 or 5 hours to get decent medical care. I wish I could be

more encouraging, but I can't. If you cannot travel out of your area to get

the care you need, there is no way you will get around your issues with

these physicians. You will just have to live with it.

All of us here have been labled as drug seekers at one time or another. With

today's political climate and constant DEA harassment of doctors, there is

no getting around it. I'm sure you'll learn to live with it as we have and

find reputable physicians who understand and care about your pain.

Best of luck in your search. Things will work out for you as they have for

the rest of us. Keep your chin up. We'll help you any way we can.

Jerry/NC

**********************************

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

> >

> >

> > > 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

> > >

> > >

> > >

> > > PANCREATITIS Association, Intl.

> > > Online e-mail group

> > >

> > > To reply to this message hit & quot;reply & quot; or send

> an e-mail

> > to: Pancreatitis@Y...

> > >

> > >

[Guest guest]

> 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

,

I am sorry that you are having so much trouble. I found your

question very interesting. I also have had part of my pancreas

removed. And have often wondered that about the levels not

elevating as much due to the section of pancreas that is not there.

I discussed this with my PCP once and she thought it sounded

logical, but I have not talked about it with my GI. I am having a

hard time getting a diagnosis because my levels never elevate high

enough for my GI. I had the tail of my pancreas with a muscinous

cyst removed. And now I have a pseudocyst....but to the GI this is

all " coincidence " . Even though I have mild pain everyday, that is

usually tolerable. And I do have attacks of horrible pain about

every 2 weeks or so. I am going to do some research on this...see

if I can come up with any info. and I also have to call my GI this

week to schedule a CT so I will bring this up with him. I will let

you know if i come up with anything. Hope this finds you well!

Marisa

San Diego, CA

[Guest guest]

,

with chronic pancreatitis, frequently people do not have

elevated levels. Sometimes even below normal. This is

because, either a large portion of the pancreas was removed,

or the organ is only functioning about 10% and so it cannot

produce enough levels to make a rise in A & L levels.

If you check out the below website and do a search on

chronic pancreatitis, it explains all this.

http://hopkins-gi.org/

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Southwest and California Representative

Pancreatitis Association, International

[Guest guest]

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

Anyway, my ? is this, is there anyone out there that has had 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. to think I am exagerating about my pain...>>

,

It hard to get an Er or Urgent care center to take you serious when your enzymes

aren't elevated. I have the same problem. I even tell the doc before

the do the blood test that they won't be elevated and they look at me like I'm

crazy. I now have a paper I carry with me at all time that tell my medical

history and it says under conditions Chronic Pancreatitis with No enzyme

elevation. My PCP is the only one that realizes that this happens to me, my

Gastro doesn't think this happens, but he not too much on the ball. There is a

site under Hopkins Web site, that says that this can happen with the no

enzymes elevation. Maybe print a copy of it and take it with you, so they can

see it does happen to other people and that we are in real pain.

I hope that this helps a little. I do know where your are coming from.

Take Care,

Louie in WV

[Guest guest]

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

Anyway, my ? is this, is there anyone out there that has had 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. to think I am exagerating about my pain...>>

,

It hard to get an Er or Urgent care center to take you serious when your enzymes

aren't elevated. I have the same problem. I even tell the doc before

the do the blood test that they won't be elevated and they look at me like I'm

crazy. I now have a paper I carry with me at all time that tell my medical

history and it says under conditions Chronic Pancreatitis with No enzyme

elevation. My PCP is the only one that realizes that this happens to me, my

Gastro doesn't think this happens, but he not too much on the ball. There is a

site under Hopkins Web site, that says that this can happen with the no

enzymes elevation. Maybe print a copy of it and take it with you, so they can

see it does happen to other people and that we are in real pain.

I hope that this helps a little. I do know where your are coming from.

Take Care,

Louie in WV