Re: Date of onset / diagnosis/ course of illness

[Guest guest]

In a message dated 2/27/00 11:51:20 PM Central Standard Time,

djssekis@... writes:

<< i was trying to get an idea of how long each of you had this problem -

how it had intensified or progressed. how did they finally diagnose your

problem? >>

Debbie,

In my situation I was diagnosed as end stage. My surgeon told me (this is my

interpretation only) that Pancreatitis takes about 10 years to run its

course. He showed me a picture of a healthy pancreas and one that was near

" burn out " or end stage. I asked him what my pancreas looked like, and he

pointed to the latter. There are a few of us here that are in end stage.

Essentially, the primary focus of my treatment is to improve the quality of

life and make me more comfortable. I had the distal end of my pancreas

removed and my entire spleen removed a month after I was diagnosed. The

remaining portion of my pancreas, the head, is completely calcified or turned

to stone. There are stones crammed into my duct and its branches, there is

literally no breathing room. At this point surgery would not offer me any

relief, at least that is my opinion based on what I understand. The important

key here is just that. Having Pancreatitis and having to take a large amount

of IV narcotics and nutrition by IV TPN, I am essentially on sensory

overload. I always take someone to the doctor with me whenever I go, to be my

advocate, but also to help me assimilate everything the doctor has said.

What is also difficult is that there is very little literature regarding

Chronic Pancreatitis. This is a completely different disease process than

chronic Pancreatitis. It is impossible to compare the two, although, so many

physicians try.

I went to the ER with severe abd pain. My lab work done did not reveal any

problems with my enzymes, so they quickly ruled out Pancreatitis. What they

didn't understand is that in End Stage Chronic Pancreatitis the pancreas no

longer is able to produce elevated enzymes. On my 4th day the physician was

going to discharge me. I insisted on an abd CT scan. It revealed diffuse

calcification throughout the pancreas confirming the diagnosis of Chronic

Pancreatitis.

Karyn

<A HREF= " http://hometown.aol.com/karynwms/myhomepage/business.html " >Pancreatit

is Support Network</A>

[Guest guest]

I am a new member, my husband is the one with chronic pancreatitis. First

let me say that we are on an HMO so we are limited as to the doctors we can

use. Unfortunately, the only gastroenterologists approved are 4 doctors who

work together in a large clinic here in WIchita, KS.

He first became ill in August 1998 and was finally diagnosed in October 1998

when he had an ERCP which through him into severe pancreatitits. Immediately

following the ERCP, the doctor told me that he could not find blocked ducts,

and that I could take him home. When we got back to his room, the nurses

immediately asked if there was anything he needed. He said he was very

hungry as it was late afternoon. They immediately gave him a sandwich, and

started to help him get ready to go home. They told me to get our vehicle

and they would bring him down.

I waited quite some time and a nurse finally came down & said that he had

fainted and I should come back to his room. He had fainted and fallen in the

bathroom, hit his nose on the trash can, and went from there into the severe

pancreatitis. 21 days in the hospital. From what I read now, I don't think

he should have had any food and the doctor probably should have put that on

the instructions, if there were any.

He was offwork from Oct. 98 to mid January 99 and only went back to work due

to pressure from his employer. He worked minimal # of hours, because he is

still in pain. He has pseudocysts more than a year old. The largest was 6cm

(I'm not good with metric, but I know it was a 6 maybe mm) It has only gone

down to 5.5 as of October 1999. We go again in March. The doctors seem to

think this is going to cure itself. They don't seem to want to do anything.

I am sorry this is so long - I guess I am just wondering if anyone else has

had the problem with the pseudocysts. I don't even know if the pain is

pancreatitis or pseudocysts. He also has diabetes, which he had before

becoming ill (controlled strictly by diet prior to pancreatitis). So now he

takes insulin and they give him medication to keep the pancreas from working

(so it can heal itself), so his amylase etc. counts are not very elevated

(and they keep talking about how good it is that these counts look good).

We switched doctors within the group and feel that all they are doing is

covering for one another.

He is now offwork, on Long Term Disability and trying to get his social

security, which is another story in itself.

We would appreciate hearing from anyone regarding the pseudocysts or similar

problems to his. Thanks.

& Jan

[Guest guest]

every one of the six times i have been hospitalized my enzyme levels have

been extremely high. they put me on ivs for several days and

demerol/phenegren for pain/nausea. they keep testing my blood for the

amylase, lipase etc;. they have run cat scans, ercp, upper gi, lower gi,

cholenoscopy (sp), removed my gall bladder and then friday the pet scan.

the pet scan is used to determine tumors etc;. the radioactive substance was

flown in from vanderbilt university in nashville. it had to be used within a

certain amount of time or it lost its effect. it was injected into my

bloodstream along with a sugar/saline solution. the organs and cells that

have been deprived of insulin soak it up more than other places. the dr.

said that abnormal cells and areas would absorb more of it and this would

show up on the scan. after i was injected they wait 20 minutes for the body

to absorb the radioactive isotopes. then the scan lasts for an hour and 1/2.

the worst part of it was my lower back hurt really back from the thin pad

that you have to lay on for so long. my gastro dr. called me sat. morning to

tell me that the test didn't show any tumors or anything. i really wasn't

worried about it - he called me first thing sat. morning and woke me up - he

probably thought i had been really worried about it.

he and the endochronoligist (sp?) both said they were scratching their heads

for a reason for my illness.

[Guest guest]

karyn - to continue

at thirst they thought it was because of high triglyceride levels - which i

do have because of heredity. i was already on medication for that and high

blood pressure. they changed my medication, took me off oral hormone pills

and put me on patches, took me off diuretics.

the last two times i was hospitalized all my lipids were GREAT - so that kind

of ruled that out. all the people i work with don't understand why they

can't find a " reason " for this illness. i copied some information i had

found myself about 30% of the people who have this never have the direct

cause found and sent to some of them on an email. i don't think it sinks in.

one girl asked me this morning since the petscan didn't show anything, was

the dr. going to let me come back to work.

since i have short term and long term disability i really don't want to be in

a hurry to go back! i would like them to find out all they can about this

and see if there is a cause for me.

[Guest guest]

i am not in end stage chronic pancreatitis. Iam stabilized in the end of the

early stages of the disease. I take enzymes, medicine for nausea and pain.

I had acute

pancreatitis 12 years ago and noone bothered to tell me that I would always

have the disease in a chronic form. Because once you have had it it never

gets well again it only gets worse. I got very sick about a year and a half

ago. The runs etc etc. It took tham a year to find out what it was and I

lost about 25 popunds.Now the amount

of enzymes I take are keeping me in a holding stage.

How on earth do you get on onelist I kept putting my info in and they kept

telling me I had the wrong password. What is tat all about?

Lynnear@...

[Guest guest]

Hi,

The not kknowing is always awful. The first question that my doctor asked is

how much I drink alcohol.

Which was really funny becauses I hardly ever have a drinnk and have always

been

the designated driver. That's when they decided that it was a virus.

Lynnear@...

[Guest guest]

thanks, kelly. it helps to know what other people have gone through - how

long they have had problems etc;.

[Guest guest]

Dear Karyn, Your story has touched me. I am a caregiver. For a long time I

have feared the unknown. I'm not afraid anymore. Thank you for sharing. Nell

[Guest guest]

About the onelist thing... Have you clicked on the " Forgot Your

Password? " link? THey'll email you your password. Maybe you changed it

and forgot. I did that once ... very aggravating.

LynneAR@... wrote:

>

> From: LynneAR@...

>

> i am not in end stage chronic pancreatitis. Iam stabilized in the end

> of the

> early stages of the disease. I take enzymes, medicine for nausea and

> pain.

> I had acute

> pancreatitis 12 years ago and noone bothered to tell me that I would

> always

> have the disease in a chronic form. Because once you have had it it

> never

> gets well again it only gets worse. I got very sick about a year and

> a half

> ago. The runs etc etc. It took tham a year to find out what it was

> and I

> lost about 25 popunds.Now the amount

> of enzymes I take are keeping me in a holding stage.

>

> How on earth do you get on onelist I kept putting my info in and they

> kept

> telling me I had the wrong password. What is tat all about?

> Lynnear@...

> ----------------------------------------------------------------------

>

> [ o n h e a l t h ]

>

> [ o n h e a l t h ] 3x + / wk 1-2x / wk 0-1x / wk

>

>

> ----------------------------------------------------------------------

[Guest guest]

Hi Debbie,

I first started getting sick in June '99. The pains that I had would

range from sharp stabbing pain in my lower left side to general achy

pain in the same place. I also had a real loss of appetite, because

everytime I ate, I felt awful - no nausea, just a very painful, " full "

feeling

I was diagnosed in Sept after going through about five doctors. I

finally got referred to a good gastro guy. He first suspected

pancreatitis after doing blood work. He then did a CT and followed that

up with a ERCP.

I never have had any nausea. Well, that may not be true. Three years

ago and then again the following year, I had " stomach viruses " that

lasted one week each. Oh my god! I've never felt pain like that. A

real burning in the center of my stomach - I also had a fever, too. It

was the kind of pain that had me rolling around in the floor. I'd throw

up, feel better for a while and then the buring would start again. I

thought I would die! My SO was determined to take me to the ER but I

wouldn't go. One, who wants to go anywhere feeling like that and two, I

hate going to the doctors. I did call my gyn, who was until now the

only doctor I've seen in the last 10 years. The nurse told me both

times that a virus was going around and to just not take anything by

mouth until the vomiting stopped. I couldn't even drink water without

throwing up. I now believe that these were pancreatitis attacks, but

who knows...?

After having three ERCPs and two stents to drain a cyst, I've felt

almost normal since the last ercp (mid-December) when they took the

stent out. I still have a few off days now and then, but I just lay off

the food and it generally rights itself. (BTW, I'm one of the lucky

ones on the list.)

Anyway, that's the short (???) version of my story...

>

> In a message dated 2/27/00 11:51:20 PM Central Standard Time,

> djssekis@... writes:

>

> << i was trying to get an idea of how long each of you had this

> problem -

> how it had intensified or progressed. how did they finally diagnose

> your

> problem? >>

>

[Guest guest]

I had a pseudo cyst that was caused because my pancreas was so inflamed

my ducts couldn't drain. It ruptured and leaked a bunch of fluid out

into my peritoneal cavity. It finally went away after a couple of ercps

and stents (ercps were a month apart). Since my third ercp when they

took out the 2nd stent, I have been pretty much ok.

jtice4840@... wrote:

>

> From: jtice4840@...

>

> I am a new member, my husband is the one with chronic pancreatitis.

> First

> let me say that we are on an HMO so we are limited as to the doctors

> we can

> use. Unfortunately, the only gastroenterologists approved are 4

> doctors who

> work together in a large clinic here in WIchita, KS.

>

> He first became ill in August 1998 and was finally diagnosed in

> October 1998

> when he had an ERCP which through him into severe pancreatitits.

> Immediately

> following the ERCP, the doctor told me that he could not find blocked

> ducts,

> and that I could take him home. When we got back to his room, the

> nurses

> immediately asked if there was anything he needed. He said he was

> very

> hungry as it was late afternoon. They immediately gave him a

> sandwich, and

> started to help him get ready to go home. They told me to get our

> vehicle

> and they would bring him down.

> I waited quite some time and a nurse finally came down & said that he

> had

> fainted and I should come back to his room. He had fainted and fallen

> in the

> bathroom, hit his nose on the trash can, and went from there into the

> severe

> pancreatitis. 21 days in the hospital. From what I read now, I don't

> think

> he should have had any food and the doctor probably should have put

> that on

> the instructions, if there were any.

>

> He was offwork from Oct. 98 to mid January 99 and only went back to

> work due

> to pressure from his employer. He worked minimal # of hours, because

> he is

> still in pain. He has pseudocysts more than a year old. The largest

> was 6cm

> (I'm not good with metric, but I know it was a 6 maybe mm) It has

> only gone

> down to 5.5 as of October 1999. We go again in March. The doctors

> seem to

> think this is going to cure itself. They don't seem to want to do

> anything.

>

> I am sorry this is so long - I guess I am just wondering if anyone

> else has

> had the problem with the pseudocysts. I don't even know if the pain

> is

> pancreatitis or pseudocysts. He also has diabetes, which he had

> before

> becoming ill (controlled strictly by diet prior to pancreatitis). So

> now he

> takes insulin and they give him medication to keep the pancreas from

> working

> (so it can heal itself), so his amylase etc. counts are not very

> elevated

> (and they keep talking about how good it is that these counts look

> good).

> We switched doctors within the group and feel that all they are doing

> is

> covering for one another.

>

> He is now offwork, on Long Term Disability and trying to get his

> social

> security, which is another story in itself.

>

> We would appreciate hearing from anyone regarding the pseudocysts or

> similar

> problems to his. Thanks.

>

> & Jan

>

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>

> [ o n h e a l t h ]

> Enter: [ o n h e a l t h ]

>

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