Re: Regular ERCPs to control PSC..opinions requested/Kirk

[Guest guest]

What determines when an ERCP is required? Elevated LFTs, cholangitis?

I'm surprised you've never had stents. The theory is that the stent allows time for the bile duct to heal in the "new" diameter. I've only had one stent placed, and that only for two weeks (I may not be typical, however). The longest I've heard of is six months, but I think that's extreme due to the high probability of clogged stents after that amount of time.

From http://www.guideline.gov/summary/summary.aspx?ss=15 & doc_id=7781 & nbr=4486

Strictures that develop in patients with primary sclerosing cholangitis (PSC) tend to respond well to endoscopic therapy, either with balloon dilation alone or in combination with the placement of endoscopic stents. The limited data available on this topic suggest that balloon dilation may be sufficient and that the use of stents to treat these strictures may be associated with an increased risk of complications and cholangitis. Endoscopic therapy of strictures has been shown to be beneficial overall in patients with PSC, and one study suggested that it may improve survival.

He may subscribe to the "balloon dilation may be sufficient" treatment. I confess I had not heard of it before I looked for articles.

Another one that supports this - http://www.asge.org/nspages/practice/patientcare/technology/stricturetools.cfm

Except for strictures associated with PSC, dilation alone is largely ineffective and should be accompanied by stent placement. Dilation, with or without stenting, reduces cholestasis and episodes of pain and fever in selected patients with dominant strictures from primary sclerosing cholangitis (PSC).

Dr. Ostroff appears to be well published - must know his stuff! http://gi.ucsf.edu/pdf/poster_uma.pdf. I've learned something again!

Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota

From: [mailto: ] On Behalf Of Kirk

I have been diagnosed with PSC since 1995. For the last four years I have been having at increasingly more frequent intervals ERCPs to open my bile ducts.

[Guest guest]

What determines when an ERCP is required? Elevated LFTs, cholangitis?

I'm surprised you've never had stents. The theory is that the stent allows time for the bile duct to heal in the "new" diameter. I've only had one stent placed, and that only for two weeks (I may not be typical, however). The longest I've heard of is six months, but I think that's extreme due to the high probability of clogged stents after that amount of time.

From http://www.guideline.gov/summary/summary.aspx?ss=15 & doc_id=7781 & nbr=4486

Strictures that develop in patients with primary sclerosing cholangitis (PSC) tend to respond well to endoscopic therapy, either with balloon dilation alone or in combination with the placement of endoscopic stents. The limited data available on this topic suggest that balloon dilation may be sufficient and that the use of stents to treat these strictures may be associated with an increased risk of complications and cholangitis. Endoscopic therapy of strictures has been shown to be beneficial overall in patients with PSC, and one study suggested that it may improve survival.

He may subscribe to the "balloon dilation may be sufficient" treatment. I confess I had not heard of it before I looked for articles.

Another one that supports this - http://www.asge.org/nspages/practice/patientcare/technology/stricturetools.cfm

Except for strictures associated with PSC, dilation alone is largely ineffective and should be accompanied by stent placement. Dilation, with or without stenting, reduces cholestasis and episodes of pain and fever in selected patients with dominant strictures from primary sclerosing cholangitis (PSC).

Dr. Ostroff appears to be well published - must know his stuff! http://gi.ucsf.edu/pdf/poster_uma.pdf. I've learned something again!

Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota

From: [mailto: ] On Behalf Of Kirk

I have been diagnosed with PSC since 1995. For the last four years I have been having at increasingly more frequent intervals ERCPs to open my bile ducts.

[Guest guest]

What determines when an ERCP is required? Elevated LFTs, cholangitis?

I'm surprised you've never had stents. The theory is that the stent allows time for the bile duct to heal in the "new" diameter. I've only had one stent placed, and that only for two weeks (I may not be typical, however). The longest I've heard of is six months, but I think that's extreme due to the high probability of clogged stents after that amount of time.

From http://www.guideline.gov/summary/summary.aspx?ss=15 & doc_id=7781 & nbr=4486

Strictures that develop in patients with primary sclerosing cholangitis (PSC) tend to respond well to endoscopic therapy, either with balloon dilation alone or in combination with the placement of endoscopic stents. The limited data available on this topic suggest that balloon dilation may be sufficient and that the use of stents to treat these strictures may be associated with an increased risk of complications and cholangitis. Endoscopic therapy of strictures has been shown to be beneficial overall in patients with PSC, and one study suggested that it may improve survival.

He may subscribe to the "balloon dilation may be sufficient" treatment. I confess I had not heard of it before I looked for articles.

Another one that supports this - http://www.asge.org/nspages/practice/patientcare/technology/stricturetools.cfm

Except for strictures associated with PSC, dilation alone is largely ineffective and should be accompanied by stent placement. Dilation, with or without stenting, reduces cholestasis and episodes of pain and fever in selected patients with dominant strictures from primary sclerosing cholangitis (PSC).

Dr. Ostroff appears to be well published - must know his stuff! http://gi.ucsf.edu/pdf/poster_uma.pdf. I've learned something again!

Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota

From: [mailto: ] On Behalf Of Kirk

I have been diagnosed with PSC since 1995. For the last four years I have been having at increasingly more frequent intervals ERCPs to open my bile ducts.

[Guest guest]

> The longest I've heard of is six months, but I think that's extreme

due to

> the high probability of clogged stents after that amount of time.

>

There are permanent metal stents that can be placed, but the docs seem

to prefer plastic temporary stents, so permanent ones are uncommon.

Martha (MA)

[Guest guest]

> The longest I've heard of is six months, but I think that's extreme

due to

> the high probability of clogged stents after that amount of time.

>

There are permanent metal stents that can be placed, but the docs seem

to prefer plastic temporary stents, so permanent ones are uncommon.

Martha (MA)

[Guest guest]

Thanks a lot for all your research. I have never asked Dr. Ostroff

what determines frequency. However the mere fact that now he is

hardly able to open my ducts at four week intervals suggests that I

need an ERCP at least that often. It used to be three months...then

time got progressively shorter as the disease progresses. Ostroff is

afraid that the ducts will no longer be capable of being opened if a

long period of time elapses.

However there is only so much " wear and tear " you can put on your

ducts before you run increasingly greater risks of tears and

ruptures..after all ducts were not meant to be manually forced open

every month. So that is the ultimate down side of this therapy. You

avoid the infections of closed bile ducts, but it is hard on your body.

>

> What determines when an ERCP is required? Elevated LFTs, cholangitis?

>

> I'm surprised you've never had stents. The theory is that the stent

allows

> time for the bile duct to heal in the " new " diameter. I've only had one

> stent placed, and that only for two weeks (I may not be typical,

however).

> The longest I've heard of is six months, but I think that's extreme

due to

> the high probability of clogged stents after that amount of time.

>

> From http://www.guideline.gov/summary/summary.aspx?ss=15

>

<http://www.guideline.gov/summary/summary.aspx?ss=15 & doc_id=7781 & nbr=4486>

> & doc_id=7781 & nbr=4486

>

> Strictures that develop in patients with primary sclerosing cholangitis

> (PSC) tend to respond well to endoscopic therapy, either with balloon

> dilation alone or in combination with the placement of endoscopic

stents.

> The limited data available on this topic suggest that balloon

dilation may

> be sufficient and that the use of stents to treat these strictures

may be

> associated with an increased risk of complications and cholangitis.

> Endoscopic therapy of strictures has been shown to be beneficial

overall in

> patients with PSC, and one study suggested that it may improve

survival.

>

> He may subscribe to the " balloon dilation may be sufficient "

treatment. I

> confess I had not heard of it before I looked for articles.

>

> Another one that supports this -

>

http://www.asge.org/nspages/practice/patientcare/technology/stricturetools.c

> fm

>

> Except for strictures associated with PSC, dilation alone is largely

> ineffective and should be accompanied by stent placement. Dilation,

with or

> without stenting, reduces cholestasis and episodes of pain and fever in

> selected patients with dominant strictures from primary sclerosing

> cholangitis (PSC).

>

> Dr. Ostroff appears to be well published - must know his stuff!

> http://gi.ucsf.edu/pdf/poster_uma.pdf. I've learned something again!

>

> Arne

> 55 - UC 1977, PSC 2000

> Alive and (mostly) well in Minnesota

>

>

>

> _____

>

> From:

[mailto: ] On

> Behalf Of Kirk

>

>

> I have been diagnosed with PSC since 1995. For the last four years I

have

> been having at increasingly more frequent intervals ERCPs to open my

bile

> ducts.

>

[Guest guest]

Thanks a lot for all your research. I have never asked Dr. Ostroff

what determines frequency. However the mere fact that now he is

hardly able to open my ducts at four week intervals suggests that I

need an ERCP at least that often. It used to be three months...then

time got progressively shorter as the disease progresses. Ostroff is

afraid that the ducts will no longer be capable of being opened if a

long period of time elapses.

However there is only so much " wear and tear " you can put on your

ducts before you run increasingly greater risks of tears and

ruptures..after all ducts were not meant to be manually forced open

every month. So that is the ultimate down side of this therapy. You

avoid the infections of closed bile ducts, but it is hard on your body.

>

> What determines when an ERCP is required? Elevated LFTs, cholangitis?

>

> I'm surprised you've never had stents. The theory is that the stent

allows

> time for the bile duct to heal in the " new " diameter. I've only had one

> stent placed, and that only for two weeks (I may not be typical,

however).

> The longest I've heard of is six months, but I think that's extreme

due to

> the high probability of clogged stents after that amount of time.

>

> From http://www.guideline.gov/summary/summary.aspx?ss=15

>

<http://www.guideline.gov/summary/summary.aspx?ss=15 & doc_id=7781 & nbr=4486>

> & doc_id=7781 & nbr=4486

>

> Strictures that develop in patients with primary sclerosing cholangitis

> (PSC) tend to respond well to endoscopic therapy, either with balloon

> dilation alone or in combination with the placement of endoscopic

stents.

> The limited data available on this topic suggest that balloon

dilation may

> be sufficient and that the use of stents to treat these strictures

may be

> associated with an increased risk of complications and cholangitis.

> Endoscopic therapy of strictures has been shown to be beneficial

overall in

> patients with PSC, and one study suggested that it may improve

survival.

>

> He may subscribe to the " balloon dilation may be sufficient "

treatment. I

> confess I had not heard of it before I looked for articles.

>

> Another one that supports this -

>

http://www.asge.org/nspages/practice/patientcare/technology/stricturetools.c

> fm

>

> Except for strictures associated with PSC, dilation alone is largely

> ineffective and should be accompanied by stent placement. Dilation,

with or

> without stenting, reduces cholestasis and episodes of pain and fever in

> selected patients with dominant strictures from primary sclerosing

> cholangitis (PSC).

>

> Dr. Ostroff appears to be well published - must know his stuff!

> http://gi.ucsf.edu/pdf/poster_uma.pdf. I've learned something again!

>

> Arne

> 55 - UC 1977, PSC 2000

> Alive and (mostly) well in Minnesota

>

>

>

> _____

>

> From:

[mailto: ] On

> Behalf Of Kirk

>

>

> I have been diagnosed with PSC since 1995. For the last four years I

have

> been having at increasingly more frequent intervals ERCPs to open my

bile

> ducts.

>

[Guest guest]

Thanks a lot for all your research. I have never asked Dr. Ostroff

what determines frequency. However the mere fact that now he is

hardly able to open my ducts at four week intervals suggests that I

need an ERCP at least that often. It used to be three months...then

time got progressively shorter as the disease progresses. Ostroff is

afraid that the ducts will no longer be capable of being opened if a

long period of time elapses.

However there is only so much " wear and tear " you can put on your

ducts before you run increasingly greater risks of tears and

ruptures..after all ducts were not meant to be manually forced open

every month. So that is the ultimate down side of this therapy. You

avoid the infections of closed bile ducts, but it is hard on your body.

>

> What determines when an ERCP is required? Elevated LFTs, cholangitis?

>

> I'm surprised you've never had stents. The theory is that the stent

allows

> time for the bile duct to heal in the " new " diameter. I've only had one

> stent placed, and that only for two weeks (I may not be typical,

however).

> The longest I've heard of is six months, but I think that's extreme

due to

> the high probability of clogged stents after that amount of time.

>

> From http://www.guideline.gov/summary/summary.aspx?ss=15

>

<http://www.guideline.gov/summary/summary.aspx?ss=15 & doc_id=7781 & nbr=4486>

> & doc_id=7781 & nbr=4486

>

> Strictures that develop in patients with primary sclerosing cholangitis

> (PSC) tend to respond well to endoscopic therapy, either with balloon

> dilation alone or in combination with the placement of endoscopic

stents.

> The limited data available on this topic suggest that balloon

dilation may

> be sufficient and that the use of stents to treat these strictures

may be

> associated with an increased risk of complications and cholangitis.

> Endoscopic therapy of strictures has been shown to be beneficial

overall in

> patients with PSC, and one study suggested that it may improve

survival.

>

> He may subscribe to the " balloon dilation may be sufficient "

treatment. I

> confess I had not heard of it before I looked for articles.

>

> Another one that supports this -

>

http://www.asge.org/nspages/practice/patientcare/technology/stricturetools.c

> fm

>

> Except for strictures associated with PSC, dilation alone is largely

> ineffective and should be accompanied by stent placement. Dilation,

with or

> without stenting, reduces cholestasis and episodes of pain and fever in

> selected patients with dominant strictures from primary sclerosing

> cholangitis (PSC).

>

> Dr. Ostroff appears to be well published - must know his stuff!

> http://gi.ucsf.edu/pdf/poster_uma.pdf. I've learned something again!

>

> Arne

> 55 - UC 1977, PSC 2000

> Alive and (mostly) well in Minnesota

>

>

>

> _____

>

> From:

[mailto: ] On

> Behalf Of Kirk

>

>

> I have been diagnosed with PSC since 1995. For the last four years I

have

> been having at increasingly more frequent intervals ERCPs to open my

bile

> ducts.

>

[Guest guest]

If I were you I would have a conversation with him about stenting and

why he doesn't do it in your case. Minimizing ERCPs is usually a good

idea, because of the risk of pancreatitis and infections. Even with a

very experienced endoscopist, the consequences can be severe, although

the frequency of complications is lower.

Martha (MA)

[Guest guest]

If I were you I would have a conversation with him about stenting and

why he doesn't do it in your case. Minimizing ERCPs is usually a good

idea, because of the risk of pancreatitis and infections. Even with a

very experienced endoscopist, the consequences can be severe, although

the frequency of complications is lower.

Martha (MA)

[Guest guest]

If I were you I would have a conversation with him about stenting and

why he doesn't do it in your case. Minimizing ERCPs is usually a good

idea, because of the risk of pancreatitis and infections. Even with a

very experienced endoscopist, the consequences can be severe, although

the frequency of complications is lower.

Martha (MA)

[Guest guest]

Martha wrote:

>

> There are permanent metal stents that can be placed, but the docs seem

> to prefer plastic temporary stents, so permanent ones are uncommon.

Shortly after my stent was placed (Nov. 2001), I had to have an MRI but

they couldn't do it until they had documentation of exactly what my

stent was made of. At that time, one of the drs. told me that it's

always plastic, as a metal stent can't be used in the bile ducts. Has

that changed or was this inaccurate info to begin with?

Regards,

Carolyn B. in SC

[Guest guest]

Martha wrote:

>

> There are permanent metal stents that can be placed, but the docs seem

> to prefer plastic temporary stents, so permanent ones are uncommon.

Shortly after my stent was placed (Nov. 2001), I had to have an MRI but

they couldn't do it until they had documentation of exactly what my

stent was made of. At that time, one of the drs. told me that it's

always plastic, as a metal stent can't be used in the bile ducts. Has

that changed or was this inaccurate info to begin with?

Regards,

Carolyn B. in SC