Andi, new member

[Guest guest]

>The only symptoms that Iam dealing with now are fatigue, some

>epigastric pain below my sternum and a little to the right under my

>ribs. The pain is not constant and comes and goes when I have a full

>stomach or if I have not eaten for awhile. I can feel the pain

>radiating thru me to my back. Sometimes I have dealt with unexplained

>chills and body aches. They come for a few days and then just as

>rapidly disappear.

welcome..

happy you found us, sorry you had to look..

yes, I'd say your doctor nailed the symptoms--PSC is something to look at, but

I'd say

that (unless you have a bowel disease you didn't mention) that the odd are in

your favor

that something else is going on

this is, after all, a very rare disease--and other things can cause the symptoms

you

describe, like for one thing alcohol is not the only poison which can damage the

liver,

and SECONDARY Sclerosing Cholangitis appears the same but it is from some

outside

source causing the damage, rather than doing it to yourself, so to speak..

and, I'd also mention that I'd ask for the doc with the very best eyes and most

ultrasound

experience to take one more real close look at the gall bladder and ducts for a

little

something blocking..

maybe wait until you have the pain again and have an ultrasound, with Doppler,

done

then..

or the chills and fever--wait, do you have both chills and fever (alternating)

or just chills?

chills and fever (or just elevated temp then back to normal, several times) is a

dead

give away that it is cholangitis (I THINK, I'm not a doctor and can hardly spell

doktor--but

we have some REAL smart folks here, and a doctor or two who I hope I can count

on to

correct ALL my off base errors)

>Iam ready to go ahead with the ERCP. Is there anything that I should

>know before I commit to this proceadure. Is there any chance of

>common bile duct or pancreatic duct damage?. I have heard some people

>do end up with pancreatitis. Is this something that may become chronic

>(pancreatitis), or is it caused by irritation of the pancreatic

>duct?.

I've not heard of any damage caused by an ERCP--wait, I *think* I read here or

somewhere else of an instance where the external bile duct was accidentally

perforated--but, I'd think that that is extremely unlikey to occur..

I believe the pancreatitis, if it occurs, is a one time thing caused by

irritation as you

mentioned..

however, I'd advise you to ask a few questions about the procedures used to

clean the

ERCP " snake " between patients..if they don't mention disassembly and manually

cleaning the channels with small brushes, and a double " wash " with really high

powered

cleaning/sterilizing agents, then I'd ask for a referral to another

facility..or, special

treatment by your favorite doc..

I can't find it here on my harddrive (and don't have the patience to find it on

the eGroup

site) can anyone point Andi to that information posted several months back about

pancreatitis and ERCP tool cleaning procedures--(get it and read it, use it as a

basis for

your questions--if they see you know what you are asking about it might help

them be

very careful with you)

I can tell you, my wife had pancreatitis following her only ERCP and it ain't

fun, not even

close--and, it can take WEEKS to completely clear..

avoid it if you can..

and, hey...the doc's are likely to shrug and say " well, it happens sometimes "

and they

are right, but you owe it to yourself to get them to do all they can to minimize

the

risk..(equipment cleaning and prophylactic antibiotics--and, someone here

mentioned

that you should ask to be the first patient of the day (more likely that the

equipment was

thoroughly cleaned) and it should have another " quick wash " just prior to use if

it hung

more than X hours---where IS that informative posting? I THINK a search using

" ercp

AND brush AND pancreatitis AND clean " would turn it up..[if eGroup's search

engine

allows Boolean search strings])

>I am so glad I found this group.

I wonder HOW did you find the group?

did you use an Internet " search engine " like yahoo? if so, which one--if you

remember..

and, did any of those point you to the sites associated with this group,

www.pscf.org or

www..com (visit both of them, there are links and info there you may

not have

found yet)

one other thing: there probably is no real rush to do the ERCP...for PSC moves

slowly (if

you have that) and they don't seem to find anything else that needs immediate

attention..I'm not sure that *knowing* you have an incurable disease is better

than just

wondering..

on the other hand, knowing would allow you to go ahead and start urso/actigall

which

might put off the need for a transplant, until after the cure is found!

again, welcome..sorry you are here..

DenverD: husband of Mette (44), UC '73, dx PSC 6/2000, alive in Denmark

Latest on Mette is at http://www.terslose.com/mette/MetteNew.html

Email: ordsmed%post1.tele.dk (replace % with @)