Re: ERCP Caused Necrotizing Pancreatitis

[Guest guest]

While I personally don't know of anyone who has developed

necrotizing pancreatitis from an ERCP, I have heard of others

who have necrotizing pancreatitis and send you my sympathy

and best wishes for your husband's recovery.

ERCP's are noted as the 7th cause of pancreatitis, yet I have

heard of so many patients that have had attacks after this

procedure I'm surprised this number isn't higher. If you don't

mind my asking, what was the medical problem that required an

ERCP to start with?

The first concern with necrotizing pancreatitis is complete organ

failure, this usually happens within the first few days. Thankfully,

your husband seems to be beyond that point. The second

mortality concern that can occur is infection, and usually the

patient is put on an aggressive regimen of oral and rectal

antibiotics, as much of the infection can be caused by

contamination from the bowels. I trust your husband is being

treated with antibiotics ( or has been).

The reason there is often a delay in scanning the pseudocysts

again is that it is medically safer to drain or remove them when

they are fully matured and encased by a thin cellular wall.

Removal or drainage prior to their maturity is usally too risky as

there is a greater chance of them rupturing. The size of the

pseudocysts is also a determining factor as to what treatment is

necessary. Many doctors feel that pseudocysts smaller than 6

cm. are better off left alone to resolve on their own, other than to

initiate invasive procedures to drain or remove them.

I wish your husband well. I have lost all pancreatic function

myself, and know how stressful that can be. I also have a good

article on necrotizing pancreatitis that I would be happy to send

you.....although you may have researched this condition so much

on your own that you may know all there is to learn about it

already. Let us know how we can help.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SE & SW Regional Representative

PAI, Intl.

Note: All comments or advice are personal opinion only, and

should not be substituted for professional medical consultation.

> Is there anyone out there who developed necrotizing

pancreatitis from trauma to the pancreas after a routine ERCP?

[Guest guest]

I haven't had necrotizing pancreatitis from an ERCP, but I

have had several acute pancreatitis attacks within hours of

having an ERCP. I know that necrotizing is much worse than

the attacks I had since I was usually out of the hospital

after a week or so. I know that others in our group have had

attacks after ERCP, but I don't know if they were

necrotizing or not. Hopefully they'll let you know in

response to your email. Most of my cases of pancreatitis

have been caused by a birth defect called a pancreatic

divisum (divided pancreatic ducts).

I wanted to welcome you to our group and I hope you find the

answers you are looking for with this group. By the way,

what is your and your husband's names? Wish I could be of

more help.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to

that of a licensed physician or health care professional.

[Guest guest]

Hi Kimber - I have pancreas divisum too. When did yours show up? I had my first

attackabout two years ago and also have sphincter of Oddi Dysfunction. I've had

my common bile duct cut about 6 times and also sphincterotomies on my pancreatic

duct (the doc said it was so small he almost couldn't find it). I keep getting

scar tissue. Would be really interested in hearing your experience with the

whole thing. I know it's congenital and happens in utero when a fetus is about

6 - 8 weeks. Weird how it never acts up in some people and in others of us it

takes years and then WHAM! Take care - Anita

Re: ERCP Caused Necrotizing Pancreatitis

. Most of my cases of pancreatitis

have been caused by a birth defect called a pancreatic

divisum (divided pancreatic ducts).

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to

that of a licensed physician or health care professional.

[Guest guest]

I too have Pancreas Divisum and have little to no success with nerve

blocks and sympathectomies due to the size of my " greater pancreatic

duct " which, I was told, was smaller than the tear ducts on an

infant! Upon having my 1st of several surgeries to repair this

probelm, the doctor said that when he cut into the duct to enlarge

the opening, my pancreatic " juices " squited out several feet! These

were the doctor's words, not mine. Unfortunately, this surgery was

unsuccessful, just like all of my subsequent surgeries.

Andre'

[Guest guest]

Anita,

I know it's rare for those with pancreatic divisum to

actually have problems, but there are still a lot more of us

then I ever thought there would be. I started having

official problems when I was sixteen in 1986 (I say official

because my mom believes I had similar attacks when I was

between 3 -5 years old, but were never diagnosed beyond

unknown cause of severe abdominal pain). After the attack in

1986, I didn't have another one until four years later in

1990. Since then I've roughly had one attack a year (though

there were a couple of exceptions where I had two to four

attacks in one year). After my third attack, they started

looking for the divisum and of course, found it. I had a

sphincteroplasty (I believe that's the right term) to try

and fix the divisum. My problem is that I have two separate

ducts that are too small and too close together and one was

still blocked off all my life). They unblocked the one duct

and then widened both ducts with surgery (they had tried to

put in a stent, but my ducts were too small). That gave me

about 4-5 years without attacks, though they started up

again because it had become chronic. I was diagnosed as

chronic in 1997 based on ERCP films done in 1996. I am

diabetic and have other health problems unrelated to the CP.

I have retinopathy and neuropathy due to the diabetes, I

have sleep apnea, a genetic blood clotting disorder that

caused a large clot in the heart requiring a heart bypass

when I was 29, bursitis in both hips, high cholesterol, and

anemia. I think that's the whole list.

I didn't have pain everyday until January 2001, when I

recovered from the attack, but the pain didn't go away. Now,

my amylase and lipase don't elevate. They are either normal

or below normal.

I have a cousin (my mother's first cousin's daughter) also

has problems with pancreatitis. She's only had 3 attacks,

but she's already diabetic. We hope that we've caught hers

from being chronic, but we won't know until she has another

attack. Based on my problems, her doctor has already started

her on enzymes and she's been on a low fat diet for several

years. Hopefully this will slow the progression of the

disease for her.

There are several other people on this list who have

pancreatic divisum and I hope they chime in to introduce

themselves to you.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to

that of a licensed physician or health care professional.

[Guest guest]

Kimber,

You sound like you were relating my story instead of yours. I too

have Pancreas Divisum but wasn't diagnosed until 1988. I too have

been sick since I was 16 years old but have had " tummy ache " problems

and vomiting ever since I was in Grammar school (one year-5th grade I

believe-I missed 54 days of school! It's a wonder I was even

promoted to the 6th grade). I too had a stent placement attempted on

me without success due to the unusually small sizes of my ducts (one,

the larger duct was discribed to me by my surgeon as being " smaller

than the tear duct of an infant " ). This led me to several

unssuccessful attempts at a surgical repair that included a Thoracic

Sympathectomy, a Duval Procedure, a Peustow Procedure, and a Whipple

Procedure all done between the years 1990-1996/97. After all of

this, my condition has continued to get worse until now I am too sick

to even hold done a job. Kimber, it is truly amazing, when we start

comparing our stories, how similiar our experiences have been. I

guess it is true-misery really does love company

Andre'

[Guest guest]

Andre,

yeah, I had a lot of stomach problems most of my grammer

school too. I think a lot of us with pancreas divisum have

had similar problems too. The only surgery I've had was the

sphincteroplasty (I'm not sure if that's the right term, but

I think that's what they called it). I'm afraid to have any

other surgery as they don't have a good success rate. If I

wasn't diabetic already, I'd be going straigth for the

pancreatectomy/Islet Cell surgery with Dr. Sutherland.

Right now, my doctors are just trying to maintain a status

quo with my condition. I wish I was able to go to the

symposium this year and meet you, but this year is out. I'm

hoping to attend next year's symposium though. And even

though it's terrible to have this disease, there is some

comfort in knowing I'm not alone.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to

that of a licensed physician or health care professional.

[Guest guest]

" And even

though it's terrible to have this disease, there is some

comfort in knowing I'm not alone. "

I think that this is the only redeeming value in this ilness, knowing

that others out there who share in your grief and are willing to

offer

whatever help they can. I'm sorry to hear that you won't be

attending this year's Symposium as I too was looking forward to

placing a face with all of the names in this group. Maybe at next

year's conference we'll get the opportunity to " swap war stories " ...

Hoping this finds you free from pain,

Andre'

[Guest guest]

Andre',

I'll look forward to seeing you at next year's Symposium

then. I was able to go to the last two and being able to

meet some of the people I talk with on almost a daily basis

was so wonderful. However, you can put a face to my name as

my photo (with my 3 cats photos following: Smokey, Riffraff

and Velocity) is on the board site under photos. I'm in the

second set of twelve picures.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to

that of a licensed physician or health care professional.

[Guest guest]

Thanks Kimber! I just had my spincteroplasty (I guess that's what it is) a

little over a month ago and already had another attack this weekend. Kind of

disheartening. I was really hoping that this would do the trick. My doctor

said my duct is so small he almost couldn't find it, and couldn't even fit the

wire cannula in it. He didn't put in a stent and I don't know why. I need to

give him a call and see what he thinks. I just hate the thought of having

another " procedure " already. Of course I got acute pancreatitis after the last

one and threw up like a half quart of bile - didn't know I had that much in me!

My amylase and lipase usually aren't elevated in attacks although they were

during that one. No one has told me I'm " chronic " yet, although it's been going

on over two years. Actually, I remember awful abdominal pain off and on as a

child too, but it would eventually go away. Anyway, thanks for your response

and I wish you all the best. Anita

Re: ERCP Caused Necrotizing Pancreatitis

There are several other people on this list who have

pancreatic divisum and I hope they chime in to introduce

themselves to you.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to

that of a licensed physician or health care professional.