Location of pain

[Guest guest]

HI all,

I have had CP for 54 years and the location, duration and type of

pain has changed from time to time, although with some common

factors.

I have always suffered from bouts of awful upper-abdominal pain

emanating from the centre of my being, so it seems, and going

through to the back, but less vicious here than at the front. When I

was little, and right through to my 30's, this pain came a couple of

times a year, lasted about a week and left me, apparently, fit as a

fiddle in between but terribly ill in bed while it lasted. Nothing

but " gastritis " was ever diagnosed but I knew instinctively that

something was very wrong. I still get that pain but it has not

usually been as severe since I started taking Creon after my

definitive diagnosis in 2003.

In my late 30's I started getting another type of pain caused by the

onset of malabsorption. It was in the lower abdomen, much like

gastroenteritis, and was accompanied by terrible steatorrhoea or

diarrhoea. Often it folowed a couple of days of the upper pain.

Gradually I got to the stage where I lost a lot of weight and was

really ill all the time. Investigations showed nothing. Finally, a

new gastro tested me in 1988 for CP (I told him my mother had died

from acute pancreatitis in 1965 after many years of pancreatitis)

but the ERCP and CT scan found nothing definitive. I think he was

still suspicious though but even less was known about the disease

than today. Then he tested me for coeliac disease and the result was

positive. Going on the gluten-free diet definitely helped a lot but

did not cure me completely. In 1999 those horrible upper-abdominal

pains came back with a vengeance (they'd never left me completely)

and I felt ill a lot of the time. The malabsorption was always there

to a degree as well.

Even since the 2003 diagnosis, I still get pain, both types, but

things are more under control since Creon, low-fat diet and strictly

no alcohol.

I have hereditary pancreatitis by the way. Sorry to digress! I am

always fascinated by discussions of pain. It is such a difficult

thing to make valid comparisons about. I really think that

pancreatic pain, the upper one I suffer from, is almost the worst

type of pain I can imagine, apart from the pain of accident injuries

etc. which might well knock one out anyway or post-operative pain,

of course.

I hope I'm not being egocentric in saying this. I do NOT want to

minimise anyone else's pain and I know very well there ARE worse

pains. However, when I think of the thousands of hours I have spent

in my lifetime doubled up in acute abdominal pain, I do feel it has

not been an easy burden to bear at times and I offer my sympathy to

anyone similarly afflicted, especially children. I know what it's

like. Again, I know I've been extremely lucky so far in many ways

and I thank God for it. I certainly don't mean to sound sorry for

myself!

BTW again, my ENT appt went well. I have nasal polyps! That explains

the loss of sense of smell etc. I am on a fortnight's course of

steroid tablets and three months of steroid nose drops. Then the

consultant will see what progress has been made. Jim says he's going

to have to start washing again if I get better!!!

Lots of love,

Fliss (UK)

[Guest guest]

Thanks, Fliss.

I know the first time I had an ACUTE attack, I thought I was having

a heart attack...scared me to pieces! This was probably 10 years

ago.

Since then, I've had 3 ERCP's, a sphincterotomy which really did

help for a little while (once I got better from the surgery, which

took about 6 months). But, I'm back to hurting again!

My paternal grandfather died from stomach cancer...that was in 1922,

so who knows if that was exactly it. Having the upper abdominal

boring pain that I do, I can't imagine what he went through!!!

Feeling like you've always just been punched in the stomach!!

Shirley

> HI all,

> I have had CP for 54 years and the location, duration and type of

> pain has changed from time to time, although with some common

> factors.

> I have always suffered from bouts of awful upper-abdominal pain

> emanating from the centre of my being, so it seems, and going

> through to the back, but less vicious here than at the front. When

I

> was little, and right through to my 30's, this pain came a couple

of

> times a year, lasted about a week and left me, apparently, fit as

a

> fiddle in between but terribly ill in bed while it lasted. Nothing

> but " gastritis " was ever diagnosed but I knew instinctively that

> something was very wrong. I still get that pain but it has not

> usually been as severe since I started taking Creon after my

> definitive diagnosis in 2003.

> In my late 30's I started getting another type of pain caused by

the

> onset of malabsorption. It was in the lower abdomen, much like

> gastroenteritis, and was accompanied by terrible steatorrhoea or

> diarrhoea. Often it folowed a couple of days of the upper pain.

> Gradually I got to the stage where I lost a lot of weight and was

> really ill all the time. Investigations showed nothing. Finally, a

> new gastro tested me in 1988 for CP (I told him my mother had died

> from acute pancreatitis in 1965 after many years of pancreatitis)

> but the ERCP and CT scan found nothing definitive. I think he was

> still suspicious though but even less was known about the disease

> than today. Then he tested me for coeliac disease and the result

was

> positive. Going on the gluten-free diet definitely helped a lot

but

> did not cure me completely. In 1999 those horrible upper-abdominal

> pains came back with a vengeance (they'd never left me completely)

> and I felt ill a lot of the time. The malabsorption was always

there

> to a degree as well.

> Even since the 2003 diagnosis, I still get pain, both types, but

> things are more under control since Creon, low-fat diet and

strictly

> no alcohol.

> I have hereditary pancreatitis by the way. Sorry to digress! I am

> always fascinated by discussions of pain. It is such a difficult

> thing to make valid comparisons about. I really think that

> pancreatic pain, the upper one I suffer from, is almost the worst

> type of pain I can imagine, apart from the pain of accident

injuries

> etc. which might well knock one out anyway or post-operative pain,

> of course.

> I hope I'm not being egocentric in saying this. I do NOT want to

> minimise anyone else's pain and I know very well there ARE worse

> pains. However, when I think of the thousands of hours I have

spent

> in my lifetime doubled up in acute abdominal pain, I do feel it

has

> not been an easy burden to bear at times and I offer my sympathy

to

> anyone similarly afflicted, especially children. I know what it's

> like. Again, I know I've been extremely lucky so far in many ways

> and I thank God for it. I certainly don't mean to sound sorry for

> myself!

> BTW again, my ENT appt went well. I have nasal polyps! That

explains

> the loss of sense of smell etc. I am on a fortnight's course of

> steroid tablets and three months of steroid nose drops. Then the

> consultant will see what progress has been made. Jim says he's

going

> to have to start washing again if I get better!!!

> Lots of love,

> Fliss (UK)