Re: Re: URQ Pain - description bile blockage pain?/ERCP

[Guest guest]

Hello ,

I do very much agree with you on not using ERCP's for

routine moitoring. And also to not use that protocol

on every patient. I myself do ask plenty of questions.

A lot. But i have also assumed that doctors, specially

the experts of them, would know better than that and

would definitely take it into consideration.

I myself have asked different researchers, specially

doctor Lindor, and on more than one occasion that

question, even before my enrollment in his URSO, study

[5th year]. And he did say the same as you have

mentioned. But he also said it should be done if the

doctor sees a need for it.

In my case, i do have dominant strictures in the

common BD and some in the interhepatic duct. Also i do

get frequent colangitis attacks: Chills and fever,

specially. My itching has become horrible for the last

few months and the pain, very intense.

I do get regular ultra sounds, but i do not believe

that they would replace the inspection of the common

bile duct and specially, the scraping/biopsy. I do not

know if an MRCP would be measured at the same level as

an ERCP. And not to forget that the later is still

being considered the gold standard for diagnosis.

I do not know if you have been following the very

increasing rate of Colangiocarcinoma, cases that are

documented on this site, specifically the one's

without much significant markers, such as liver

functions, CA 19-9----. And some with even normal

functions. Plus the very difficulty of diagnosing it

and usually not until later. Real, catasrophic.

I want to thank you , for your input and also

Arne and others. That is so great. I will myself be

even more reserved about cosidering an ERCP. Other

than the risks involved, i usually stay very weak,

afterwards.

PSC/UC

--- Soloway jennifer@...> wrote:

> Hello Group,

>

> I was surprised to read that people in this group

> are receiving frequent

> ERCPs. I understand that frequent balloon dilation

> by ERCP can be very

> beneficial to people with a dominant stricture in

> the common bile duct

> and minimal or no strictures in the smaller

> intrahepatic ducts. But, I

> am wondering if some GIs are doing ERCPs routinely

> on all PSC patients

> without making any distinction.

>

> I remember speakers at the Pittsburgh and Denver PSC

> Partners

> convention, including Dr. Lindor of Mayo Clinic,

> recommending that ERCP

> not be used for routine monitoring. This is because

> the risks of ERCP outweigh the benefits for routing

monitoring (as opposed to treatment or initial

diagnosis). Some doctors use ultrasound and

> others MRCP for

> monitoring without risk to the patient.

>

> I am also aware that Dr. Ostroff at U.C. San

> Francisco is enthusiastic

> about frequent balloon dilations but he has never

> published a scientific

> study to prove this. I know a patient whose life he

> saved but that does

> not mean this protocol is best for all patients. I

> also understand that

> not many other doctors follow his protocol.

>

> For myself, I have extensive strictures in my

> intrahepatic ducts and

> multiple strictures in my common bile duct and left

> and right bile duct.

> So, my hepatologist recommends against ERCP for me

> unless I have

> cholangitis involving the extrahepatic ducts.

>

> So my question is, are these doctors scheduling

> frequent ERCPs without

> considering the nature of each patients stricturing?

> I would ask my

> doctor lots of questions about his/her reasons for

> the frequent ERCPs

> and get a second opinion before getting frequent

> ERCPs. If any one

> disagrees with this please jump in.

>

> (Sacramento 2001 dx PSC and UC)

>

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