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Frequency of Cholangitis

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Hi everyone,

I was wondering how often people here in the group have a cholangitis

epispode and the various symptoms they have.

I know that it's extremely individual, nevertheless, I think it's

important to have the bigger picture.

I'm particular interested in those who do NOT have UC.

Thank you,

Ellen

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> I was wondering how often people here in the group have a cholangitis

> epispode and the various symptoms they have.

I don't have UC, and its been a long time since I had a cholangitis

attack. But back in 1990, shortly after I had a roux-en-y to replace

my common bile duct, I had a series of recurrent mild fevers. I'd have

chills with a temperature just over 100 F, which would last less than

a full day and I'd feel crappy for another day or two. The first came

and went. I was glad I was over whatever that was. The second hit

about 2 weeks later. Funny, I seemed to have it again. Another two

weeks and a third episode. So I call my doctor. Of course by the time

I was seen the fever was gone but we agreed on a plan of antibiotic

treatment - I don't remember if it was immediate or if I waited for

another episode. My doctor also consulted the GI who had diagnosed PSC

the year before and they came to the conclusion that these were

cholangitis attacks and that some sort of long term treatment would be

necessary. The options were to hit occurrences with antibiotics or to

be on continuous antibiotics. We decided on the first option. After

treatment attacks occurred about 12 to 18 months apart. Still had the

same symptoms - initial chills, fever with aches and malaise, followed

by a day of very low energy.

After my transplant in 1998 I had no attacks until 2002, the year rPSC

was diagnosed. Treatment was again to use antibiotics but also in

November of 2002 to put in a PTC tube to allow drainage of the bile

through the blocked ducts. That worked, with the disadvantage that I

had a tube sticking out between my ribs for four and a half years. The

site of that tube is still readily apparent.

Tim R, ltx 4/4/98, 6/19/07 & 7/7/07

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> I was wondering how often people here in the group have a cholangitis

> epispode and the various symptoms they have.

I don't have UC, and its been a long time since I had a cholangitis

attack. But back in 1990, shortly after I had a roux-en-y to replace

my common bile duct, I had a series of recurrent mild fevers. I'd have

chills with a temperature just over 100 F, which would last less than

a full day and I'd feel crappy for another day or two. The first came

and went. I was glad I was over whatever that was. The second hit

about 2 weeks later. Funny, I seemed to have it again. Another two

weeks and a third episode. So I call my doctor. Of course by the time

I was seen the fever was gone but we agreed on a plan of antibiotic

treatment - I don't remember if it was immediate or if I waited for

another episode. My doctor also consulted the GI who had diagnosed PSC

the year before and they came to the conclusion that these were

cholangitis attacks and that some sort of long term treatment would be

necessary. The options were to hit occurrences with antibiotics or to

be on continuous antibiotics. We decided on the first option. After

treatment attacks occurred about 12 to 18 months apart. Still had the

same symptoms - initial chills, fever with aches and malaise, followed

by a day of very low energy.

After my transplant in 1998 I had no attacks until 2002, the year rPSC

was diagnosed. Treatment was again to use antibiotics but also in

November of 2002 to put in a PTC tube to allow drainage of the bile

through the blocked ducts. That worked, with the disadvantage that I

had a tube sticking out between my ribs for four and a half years. The

site of that tube is still readily apparent.

Tim R, ltx 4/4/98, 6/19/07 & 7/7/07

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Thank you to the early birds.

One point I left out, but would also like to know about is: how was

the cholangitis treated? Purely with antibotics or antibotics + an ERCP?

Thank you again,

Ellen

>

> Hi everyone,

> I was wondering how often people here in the group have a cholangitis

> epispode and the various symptoms they have.

> I know that it's extremely individual, nevertheless, I think it's

> important to have the bigger picture.

> I'm particular interested in those who do NOT have UC.

>

> Thank you,

> Ellen

>

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Thank you to the early birds.

One point I left out, but would also like to know about is: how was

the cholangitis treated? Purely with antibotics or antibotics + an ERCP?

Thank you again,

Ellen

>

> Hi everyone,

> I was wondering how often people here in the group have a cholangitis

> epispode and the various symptoms they have.

> I know that it's extremely individual, nevertheless, I think it's

> important to have the bigger picture.

> I'm particular interested in those who do NOT have UC.

>

> Thank you,

> Ellen

>

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Share on other sites

Thank you to the early birds.

One point I left out, but would also like to know about is: how was

the cholangitis treated? Purely with antibotics or antibotics + an ERCP?

Thank you again,

Ellen

>

> Hi everyone,

> I was wondering how often people here in the group have a cholangitis

> epispode and the various symptoms they have.

> I know that it's extremely individual, nevertheless, I think it's

> important to have the bigger picture.

> I'm particular interested in those who do NOT have UC.

>

> Thank you,

> Ellen

>

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Ellen,

My husband has never had a cholangitis attack that we know of. Hepatic Encephalogy is entirely a different story.

LOVE & LIGHT

Barbara (Wife of , PSC'07, HE, Chronic Pancr, Osteo, Diabetes, Listed)

Subject: Frequency of CholangitisTo: Date: Thursday, December 11, 2008, 12:06 AM

Hi everyone,I was wondering how often people here in the group have a cholangitis epispode and the various symptoms they have.I know that it's extremely individual, nevertheless, I think it's important to have the bigger picture.I'm particular interested in those who do NOT have UC.Thank you,Ellen

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My cholangitis is only treated w/antibiotics. I have ERCP's every 3 months to

change a stent so they have a pretty good idea of what's going on w/out

additional ERCP's.

Sent from my Verizon Wireless BlackBerry

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My cholangitis is only treated w/antibiotics. I have ERCP's every 3 months to

change a stent so they have a pretty good idea of what's going on w/out

additional ERCP's.

Sent from my Verizon Wireless BlackBerry

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Hi Ellen,

Since I don't have UC, I'm answering your request. When I was first diagnosed five years ago, I had repeated cholangitis attacks. They would come out of nowhere for me. I would be fine one moment, and almost immediately, my temperature would go sky high accompanied by chills, and I would have RUQ pain. My attacks were treated with antibiotics,but also with a series of ERCPs where I was stented. They actually did a routine of increasingly larger stents (every two months) for about six months. They took out the last stent about four and a half years ago, and (so far), I haven't had another cholangitis attack. I know that we're all different, but that's my story.

Ricky

PSC 2003> To: > Date: Thu, 11 Dec 2008 17:21:19 +0000> Subject: Re: Frequency of Cholangitis> > Thank you to the early birds.> > One point I left out, but would also like to know about is: how was> the cholangitis treated? Purely with antibotics or antibotics + an ERCP? > > Thank you again,> Ellen> > Send e-mail anywhere. No map, no compass. Get your Hotmail® account now.

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Hi Ellen,

Since I don't have UC, I'm answering your request. When I was first diagnosed five years ago, I had repeated cholangitis attacks. They would come out of nowhere for me. I would be fine one moment, and almost immediately, my temperature would go sky high accompanied by chills, and I would have RUQ pain. My attacks were treated with antibiotics,but also with a series of ERCPs where I was stented. They actually did a routine of increasingly larger stents (every two months) for about six months. They took out the last stent about four and a half years ago, and (so far), I haven't had another cholangitis attack. I know that we're all different, but that's my story.

Ricky

PSC 2003> To: > Date: Thu, 11 Dec 2008 17:21:19 +0000> Subject: Re: Frequency of Cholangitis> > Thank you to the early birds.> > One point I left out, but would also like to know about is: how was> the cholangitis treated? Purely with antibotics or antibotics + an ERCP? > > Thank you again,> Ellen> > Send e-mail anywhere. No map, no compass. Get your Hotmail® account now.

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