RE: Bacterial cholangitis attack?

[Guest guest]

In my experience, it never got better. I know some people dose up with antibiotics when this happens. I just went to the ER.

Arne

57 - UC 1977 - PSC 2000

Alive and well in Minnesota

________________________________

From: [mailto: ] On Behalf Of lavendula9

....Anyhow, when he got home at around 4pm, he looked pale, felt nauseus and

fell asleep on the couch.

He said he was really cold and that the nausea was coming in waves then

going away. He had a couple of paracetemols then went to bed and he

was shivering and moaning until he fell asleep about half an hour later.

....Does this sound like a cholangitis attack or would he get worse before

getting better if that was the case?...

[Guest guest]

I have had the same symptoms several times and had them resolve on

there own. The hep. thought maybe it was just " sludge " . The doc won't

give me antibiotics unless I run a temp.or have severe pain that the

pain meds don't relieve. Then the doc usually want blood work done.

I have found increasing my fluid intake, eating easy to digest food

and plenty of rest seems to help. Unless I have severe pain that the

pain meds don't relieve and/or run a temp I do not call the doc any

more with these symptoms because it usually just cost me $$ and I get

no real answers.

PSC '07 Listed

[Guest guest]

I have had the same symptoms several times and had them resolve on

there own. The hep. thought maybe it was just " sludge " . The doc won't

give me antibiotics unless I run a temp.or have severe pain that the

pain meds don't relieve. Then the doc usually want blood work done.

I have found increasing my fluid intake, eating easy to digest food

and plenty of rest seems to help. Unless I have severe pain that the

pain meds don't relieve and/or run a temp I do not call the doc any

more with these symptoms because it usually just cost me $$ and I get

no real answers.

PSC '07 Listed

[Guest guest]

I have had the same symptoms several times and had them resolve on

there own. The hep. thought maybe it was just " sludge " . The doc won't

give me antibiotics unless I run a temp.or have severe pain that the

pain meds don't relieve. Then the doc usually want blood work done.

I have found increasing my fluid intake, eating easy to digest food

and plenty of rest seems to help. Unless I have severe pain that the

pain meds don't relieve and/or run a temp I do not call the doc any

more with these symptoms because it usually just cost me $$ and I get

no real answers.

PSC '07 Listed

[Guest guest]

there is a Stomach virus going around out there too right now, as my

daughter had it severe nausea, chills, fatigued she was out of school for 8

days.

I have been wondering about Tylenol -- should someone with PCS be taking

Tylenol?? That does affect the liver, what about one of the other pain

releivers? Just wondering??

a in NE PA

>

> Ok all, I try to keep myself pretty informed and all of you do such a

good

> job sharing and posting info. thank you for that, But, now I am a bit

> confused. My Tyler age 10 for the past several days has had severe

> nausea,

> RUQ pain and was extremely cold, fatigued and so on similar to when he

> landed in the hospital 1 1/2 yrs ago before they diagnosed him with PSC.

> We saw his Hepatologist yesterday who confirmed there was no liver

> inflammation by feeling his belly. His LFTs and GGTs were somewhat

> elevated but not dramatically. His Sed rate was high but the doctor

> dismissed this saying it was probably the UC and not the PSC... I

believe

> this was the liver not his colitis as the pain is very different and he

> has

> no problem with going to the bathroom (firm, solid and no blood at all).

> No colitis cramping. We know the difference. No fever, however...

>

> What bothers me is that these doctors believe you do not have pain with

> PSC

> and that you should jsut try to live your life to the fullest. But,

Tyler

> suffers so much when he feels like this. And, I know many of you out

> there

> understand. He is extremely ill with pain and fatigue, nausea. So, I

> have

> a few questions?

>

> 1. Will the LFT's necessarily be elevated with a cholangitis attack?

What

> about bilirubin as his was normal?

> 2. Can you treat the pain with tylenol? It seemed to provide some relief

> for Tyler...

> 3. Now, that he is feeling better today, does it come and go? What do we

> watch for?

> 4. What are the repercussions of such an attack? Does it get better on

its

> own?. What is happening to cause the pain? Does it need treatment?

> 5. Does this necessarily mean the PSC is getting worse?

>

> Please anything you can share will help us as it is so frustrating to see

> him suffer and then people shrug it off or do not understand it. Our

> doctor Whittington is suppose to be one of the best (his brother is

> Gene Whittington who we do not know) but they do have differing opinions

> and are both heavily involved with research so I would think he would

have

> more compassion.

>

> They did the CA-19 which was fine a couple of weeks ago and his platelet

> counts are ok ... But, he still gets these violent bloody noses almost

> every day or at least every other which again, no one can explain.

>

> thanks all for listening and any advise you can give.!!!!

>

>

> At Your Service,

>

> Stevie Gedgaudas-Ostos

>

>

>

>

> " Tim Romlein "

>

> tromlein@...

>

> om>

To

>

> Sent by:

>

> @yahoo

cc

>

> groups.com

>

>

Subject

>

> Re: Bacterial

>

> 10/24/2008 05:23 cholangitis attack?

>

> PM

>

>

>

>

>

> Please respond to

>

> @yahoo

>

> groups.com

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> > ...

>

> > He said he was really cold and that the nausea was coming in waves

then

>

> > going away. He had a couple of paracetemols then went to bed and he

>

> > was shivering and moaning until he fell asleep about half an hour

> later.

> > I just rang him at work and he seems better but has dosed up on

>

> > paracetemol again and said he won't eat anything becasue he doesn't

>

> > want anything to make him sick.

>

> > Does this sound like a cholangitis attack ?

>

>

>

> Kate,

>

> It could very likely be a cholangitis attack. I would urge Brad to

>

> report this incident to his doctor (since it seem to be over). Did you

>

> get his temperature during it? That is something they would be

>

> interested in knowing.

>

>

>

> When I had my first cholangitis attacks they would present as a

>

> malaise/fever/chills that lasted 12 to 18 hours and then I felt fine

>

> (mostly). Only the same thing would be back 1 or 2 weeks later until I

>

> finially saw my doctor and got some antibiotic treatment.

>

>

>

> Hope Brad can get his attacks under control quickly.

>

>

>

> Tim R

>

>

>

>

>

>

>

>

[Guest guest]

there is a Stomach virus going around out there too right now, as my

daughter had it severe nausea, chills, fatigued she was out of school for 8

days.

I have been wondering about Tylenol -- should someone with PCS be taking

Tylenol?? That does affect the liver, what about one of the other pain

releivers? Just wondering??

a in NE PA

>

> Ok all, I try to keep myself pretty informed and all of you do such a

good

> job sharing and posting info. thank you for that, But, now I am a bit

> confused. My Tyler age 10 for the past several days has had severe

> nausea,

> RUQ pain and was extremely cold, fatigued and so on similar to when he

> landed in the hospital 1 1/2 yrs ago before they diagnosed him with PSC.

> We saw his Hepatologist yesterday who confirmed there was no liver

> inflammation by feeling his belly. His LFTs and GGTs were somewhat

> elevated but not dramatically. His Sed rate was high but the doctor

> dismissed this saying it was probably the UC and not the PSC... I

believe

> this was the liver not his colitis as the pain is very different and he

> has

> no problem with going to the bathroom (firm, solid and no blood at all).

> No colitis cramping. We know the difference. No fever, however...

>

> What bothers me is that these doctors believe you do not have pain with

> PSC

> and that you should jsut try to live your life to the fullest. But,

Tyler

> suffers so much when he feels like this. And, I know many of you out

> there

> understand. He is extremely ill with pain and fatigue, nausea. So, I

> have

> a few questions?

>

> 1. Will the LFT's necessarily be elevated with a cholangitis attack?

What

> about bilirubin as his was normal?

> 2. Can you treat the pain with tylenol? It seemed to provide some relief

> for Tyler...

> 3. Now, that he is feeling better today, does it come and go? What do we

> watch for?

> 4. What are the repercussions of such an attack? Does it get better on

its

> own?. What is happening to cause the pain? Does it need treatment?

> 5. Does this necessarily mean the PSC is getting worse?

>

> Please anything you can share will help us as it is so frustrating to see

> him suffer and then people shrug it off or do not understand it. Our

> doctor Whittington is suppose to be one of the best (his brother is

> Gene Whittington who we do not know) but they do have differing opinions

> and are both heavily involved with research so I would think he would

have

> more compassion.

>

> They did the CA-19 which was fine a couple of weeks ago and his platelet

> counts are ok ... But, he still gets these violent bloody noses almost

> every day or at least every other which again, no one can explain.

>

> thanks all for listening and any advise you can give.!!!!

>

>

> At Your Service,

>

> Stevie Gedgaudas-Ostos

>

>

>

>

> " Tim Romlein "

>

> tromlein@...

>

> om>

To

>

> Sent by:

>

> @yahoo

cc

>

> groups.com

>

>

Subject

>

> Re: Bacterial

>

> 10/24/2008 05:23 cholangitis attack?

>

> PM

>

>

>

>

>

> Please respond to

>

> @yahoo

>

> groups.com

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> > ...

>

> > He said he was really cold and that the nausea was coming in waves

then

>

> > going away. He had a couple of paracetemols then went to bed and he

>

> > was shivering and moaning until he fell asleep about half an hour

> later.

> > I just rang him at work and he seems better but has dosed up on

>

> > paracetemol again and said he won't eat anything becasue he doesn't

>

> > want anything to make him sick.

>

> > Does this sound like a cholangitis attack ?

>

>

>

> Kate,

>

> It could very likely be a cholangitis attack. I would urge Brad to

>

> report this incident to his doctor (since it seem to be over). Did you

>

> get his temperature during it? That is something they would be

>

> interested in knowing.

>

>

>

> When I had my first cholangitis attacks they would present as a

>

> malaise/fever/chills that lasted 12 to 18 hours and then I felt fine

>

> (mostly). Only the same thing would be back 1 or 2 weeks later until I

>

> finially saw my doctor and got some antibiotic treatment.

>

>

>

> Hope Brad can get his attacks under control quickly.

>

>

>

> Tim R

>

>

>

>

>

>

>

>

[Guest guest]

Hi Stevie

Did you ask for Tyler's blood tests from his last time in hospital?

It's always good for a reference point.

I had a cholangitis attack 14 months ago and was hospitalised. (I had

what I thought was heartburn for about 3 days before the shakes and

chills set in) I was in hospital for 6 days with IV antibiotics. My

LFT's were the same as previous tests in the first blood test, but by

the 3rd day of treatment they had dropped a bit (around 15%). CRP (C-

Reactive Protein) blood tests were taken - shoud be <5.0 the first

blood test was 9.1 then on the next 4 days were 117, 185.5, 179, 139 .

Best wishes

> The hepatologist said that typically PSC does not flare up and that

> cholangtitis attacks do not really happen. I gave the doctor an ear

full

> but he still did not seem overly concerned.