Re: ERCP query from a newbie - Warning its a long one!

[Guest guest]

Hi welcome to the group, I am relatively new also & still processing

my diagnosis. This group has been a real lifeline to me and I agree

its so reassuring to know we are not alone in out fight against this

awful disease.

I really empathise with your situation as I am currently going thru

my 4th lot of tests re my PSC in 2 years & I have lost count of how

many doctors I am on!

From my experience I would consider the following:

Exactly what are the reasons that the 2nd dr wants to do the ERCP,

does he have cause for concerns that the 1st dr did not have? Why

exactly is a stent needed, ask him for the pros & cons.

Which dr is better qualified or has more experience with PSC. This

is a big one for everyone here, you will see from past posts that

seeing a specialist with lots of experience of PSC reigns supreme.

Don't be afraid to ask how many patients they have seen with PSC.

Are the drs u have seen hepatologists or GIs, are they specialists in

PSC? If they are not hep drs perhaps a 3rd opinion is needed, don't

worry it is not unusual to go thru many drs when you are first

diagnosed, I am in the UK so I can't recommend anyone but the others

will if you want, they will know the best person in your area. I

have found that dealing with drs not really familiar/experienced with

PSC just wastes time and delays the correct treatment.

Re ERCP - different people have different experiences so it is

difficult to advise u. However the recent research which I am sure

david rhodes 1 of the sites experts will comment on too, does confirm

that the current school of thought is leaning towards MRCP now as a

diagnostic tool as it poses less risk, with ERCP being reserved for

difficult to diagnose cases & therapeutic procedures i.e. stents.

Personally I have had 2 ERCPs without severe complications but once I

got to the PSC specialist he wanted to do an MRCP first not an ERCP.

However ERCP still remains what they call the " gold standard " for

diagnosing PSC though many centres are now introducing MRCP as a 1st

line test. However ERCP is still a more accurate test, fact! You

might find the following link helpful.

http://www.niddk.nih.gov/fund/other/PSCSept2006.pdf

So you only really need the ERCP if a stent is necessary.

If u decide that u need the stent make sure that the dr doing the

ERCP has lots of experience doing them, it is a very specialised

procedure. Complications are minimised with experience. The Mayo

clinic in your country are known experts for instance.

Another thing I read recently was that ERCP should not really be done

shortly after gallbladder removal as there is a risk of complications

whilst healing is still taking place etc. So again I would only

proceed with an ERCP on the advice of a hepatologist PSC specialist.

As you are fine it may seem worth leaving alone, however check with a

PSC specialist to see if this could mean that bile is becoming backed

up in the liver & causing damage which could mean injury to the liver

without u being aware of it. Again perhaps will provide some

articles on this (his database is awesome!)

Finally, I have found that " knowledge is power " so if u have the time

read all u can on PSC on the net (if u haven't already The best

place to go is this sites partner site pscliterature.org.

I hope this helps, please feel free to email me direct if you need

any clarification.

Best wishes

(UK)

PSC 07, recurrent esophagitis & gastritis, gastro paresis,

osteopenia, endometriosis leading to total hysterectomy 2004,

gallbladder removed 2005

>

> I am a 38-year old male living in California. I am married with two

> young kids. I have managed Crohn's disease fairly easily for the

last

> 22 years, and am in otherwise good health. Following some pain in

my

> abdomen two weeks ago, my doc found gall stones and removed the gall

> bladder. During the surgery he found PSC, large and small duct,

with

> the most significant stricture in the large duct. On the basis of

the

> cholangiogram, he believes that there is no cancer present.

>

> I am now on Actigall and feeling fine, and my liver functions are

> slowly returning to normal. My doc is recommending that we treat

just

> with drugs for now. However, we got a second opinion, and the

second

> doc is recommending we do an ERCP immediately and put in a stent.

>

> Does anyone have any thoughts on this procedure? My first doc

> believed that the risks associated with the procedure (pancreatitis

in

> particular)outweigh the benefits for now, and we should wait and see

> how I do in the coming months. The second doc wants to see if he

can

> correct the stricture right away, as well to do a brushing.

>

> I've heard that ERCP is unpleasant, but a fairly commonly-done

> procedure. I'd appreciate any thoughts on this. I want to do

> whatever I can to minimize the chances of my liver getting

unhealthy,

> but the complications seem scary.

>

> Thanks for allowing me to join the group! No one I know has ever

> heard of the disease, and it's nice to know that I am not the only

one.

>