Saying Hi to the Group

[Guest guest]

Greetings, Laurie! Nice to meet you!

I searched for a site to learn about pancreatitis because my husband,

Barry, developed necrotizing pancreatitis from an ERCP in April

2003. Talk about an 'unfortunate' fluke (that's what all the doctors

say) ... so, it is not at all surprising you got it from surgery. (I

have been told forcing an object too large into the pancreatitic

ducts (ERCP) could have caused this necrosis. But, there's too much

damage, so we'll never know.)

I just wanted to say 'hi' because I still feel as though I haven't

found anyone with Barry's condition ---- except for Heidi who has

pseudocysts just as Barry does - and she has a burnt-out pancreas

whereas Barry's is dead tissue possibly the reason he does not have

the daily 'pain' as others on this site do.

Anyway, Barry's case is becoming more positive as time goes on. What

the doctors told me was " life threatening " with a " high mortality

rate " has this week now become " live as a normal person. " Barry has

not become diabetic (are you?). All the doctors (we now go to a

teaching hospital in Pittsburgh, PA) do not want to perform anything

invasive on the pseudocysts (he has one on the stomach and one on the

intestine - one is approximately 11 cm - not sure about the other).

With only the tip of pancreas working, looks as though it's doing the

job and the doctor says he doesn't need the pancrealipase enzymes any

more (are you on enzymes?).

He's able to ride horses again and do work around our farm. The only

complaint is sore joints --- not sure what to attribute this to

whether it's from being in the hospital for two months and now 'being

a normal person'??? I have read where the release of all those

enzymes when he had his attack after the ERCP can create bone

damage ??? He was in the hospital on morphine, darvocet,

attavan, 'gorilla' antiobiotics, ... bowels were shutting down,

kidneys were having trouble functioning .... life looked pretty bleak.

Oh ... Barry was on oxycodone for a few days when they sent him

home .... it 'masked' the necrosis happening to his pancreas ... made

him feel good when his pancreas was digesting itself. Be careful,

Laurie. He ended up on TPN, a central line into an artery above the

heart, then a pick line in his arm, and then home again on a nasal

feeding tube into the jejunum (what an experience this whole thing

has been).

Coincidentally, the doctor is watching the liver --- the ERCP was

because the doctor thought he might have Primary Sclerosing

Cholangitis. It's weird, but since the necrotizing pancreatitis, the

liver enzymes in the blood work are looking much better.

All in all, so far we've been very lucky. I wish you luck and hope

you find answers, Laurie ... or at least something to let you live

your life with less pain.

I try to post any information I get on the matter in case it helps

someone.

Warmly,

Beth

[Guest guest]

Laurie--Hi! Nice to meet you! I, too, was diagnosed with IBS at

first. I think the doctors will say anything until they perform the

process of elimination! That's what mine did. I went to my first

GI who stated that " it is all in your head! " Well, you can bet I

switched GIs fast! I can't believe they do that. Well, finally,

after suffering with chronic pain for approx. nine years, my current

GI has determined that I have CP. Being placed on the Panc. enzymes

has helped somewhat. Also, I have been taking the " antioxidant "

treatment for approx. two weeks now, and that, too helps somewhat.

You sound like you could have CP, but make sure they do all the

tests available to determine it. I think I've had every one

imaginable (upper and lower GI, CCK hydascan, endoscopy,

colonoscopy, etc.)!!

Good luck and I wish you well!

[Guest guest]

Hi Kaye,

thank you for responding to my initial inquiry. Interestingly, you

have hit my future treatment right on the nose. My most recent GI

has diagnosed me with probable SOD which is why he

scheduled the ERCP. Because of my elevated liver enzymes he

is convinced that a sphincterotomy will be done - but he is

ordering the manometry first to document the high pressure.

Unfortunately, while I was on vacation, he sent me a letter stating

that he is leaving his practice. In this letter he made no mention

of who was going to do the ERCP that was scheduled, so I had

to cancel. Now a sympathetic nurse has snuck me onto another

doctor's schedule but he is one that is completely unfamiliar with

my case, so I am not sure what is ultimately going to happen

with the ERCP (stent, sphincterotomy, manometry). One of the

doctors that I work with is unhappy about this situation and just

offered to pull some strings for me to get me an appointment

with the leading man in SOD here at a teaching hospital. I am

waiting to hear what comes of this, if anything. I did not know

about the multiple treatments that may be needed with SOD - I

was under the impression that this was going to be it (other than

the high risk for acute pancreatitis from the procedure). But I

should have known, once the docs get their hands on you, things

just kinda cycle downward.

My biggest concern now is to get a firm diagnosis of either SOD

or chronic pancreatitis or both so that a working plan can be

made to deal with this. This has been going on for three years

and the diagnosis that I have heard the most is that " it is all in

your head " . I am convinced that it isn't.

I work in a clinical lab for a group of doctors in a teaching

hospital in Wisconsin. Lotsa fun most of the time, but can be very

boring when some go on vacation and our patient volume is way

down.

Laurie

[Guest guest]

Hi Beth,

Thanks for responding. I am so sorry about your husband but

glad that he seems to be defying the odds and returning to a

normal life. How sad that this procedure actually caused the

disease.

I am just starting to be worked up for SOD and pancreatitis. My

ERCP is scheduled for next month but I have had some minor

problems with my doctor so I am not sure exactly what is going

to happen with the work up / diagnosis / treatment. I am not on

any definitive therapy yet as no diagnosis has been ascertained.

So far no pancreatic insufficiency has been noted (no blood

sugar problems or any other abnormal lab values other than the

liver enzymes). That is why I am leaning towards a diagnosis of

early chronic pancreatitis.

I hope your husband continues to make improvements. My

understanding is that even a little bit of a pancreas that works is

enough to keep you relatively healthy.

Laurie

[Guest guest]

Good morning, Laurie!

It's wonderful you're at a teaching hospital ... they see a lot more

situations than a local hospital. (When Barry was in our local

hospital, the nurses confessed they had never dealt with necrotizing

pancreatitis before ---- kind of scary to be the guinea pig.)

So, we ended up in Pittsburgh at a teaching hospital - thank goodness

my father coaxed us there (he's a pathologist and had some good

contacts).

Sounds as though you'll be getting some good guidance from the

doctors you work with!

Stay strong, positive and focused --- it's not in your head ... you

know it and we know it.

I'm sure you'll keep everyone posted on your progress (please)!

Beth

[Guest guest]

Hi Suzyq91054,

Thanks for your response. Just want to make sure that I make a

good impression so I am trying to respond to everyone who took

the time to welcome me. Then I will stop being so wordy!

I too was told that it was all in my head initially and that what did I

expect after having my guts removed and messed around with. I

was lucky to be alive, so I shouldn't be complaining about a little

pain, etc......

But I have had all those tests that you mentioned. Endoscopy,

colonoscopy, CTs, ultrasounds, HIDA scans, MRCP,

MRCP-CCK, fluoroscopy, etc. All of these have come up normal,

Is this consistent with chronic pancreatitis?

I am going to find out more in the next few months I am sure. I

have my ERCP scheduled for early September and a friend that

is pulling strings for me to get me into " the " doctor of SOD and

pancreatic problems. From what I know of this doctor, I think I will

be comfortable enough to raise the possibilty of chronic

pancreatitis with him. If he agrees, then maybe we can initiate

some therapy that has a purpose and logic behind it. If so, it will

be a start in finding out what can be done to " cure " the pain

instead of just masking it with narcotics.

Laurie