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]

> ...

> 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]

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 "

" Tim Romlein "

Sent by:

10/24/2008 05:23 PM

Please respond to

To

cc

Subject

Re: Bacterial cholangitis attack?

> ...

> 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]

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 "

" Tim Romlein "

Sent by:

10/24/2008 05:23 PM

Please respond to

To

cc

Subject

Re: Bacterial cholangitis attack?

> ...

> 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]

> ... 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?

Alk phos will usually go up during an attack. But it may not be

extremely high, others may not go up much at all. White Blood Count

(WBC) may go up too, if it is bacterial cholangitis.

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

relief

> for Tyler...

My doctors always said yes. Check with yours about what they

recommend. Be sure not to exceed the recommended dose as at doses

above that (4g/24 hrs for adults) Tylenol can be toxic to the liver.

Tylenol is usually recommended because other pain meds tend to reduce

clotting ability and that can be a problem in end stage liver disease.

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

do we

> watch for?

Unfortunately it dose come and go. How soon is hard to tell. Untreated

mine recurred every week or so. Treated it would be about a year or

so. Watch for a return of the same symptoms, especially fever. With

fever get treatment as soon as possible. I kept antibiotics on hand to

start treatment when I noticed an attack starting. Your doctor may

want to see Tyler before any treatment starts.

> 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?

Attacks tend to accelerate the scaring of the ducts and increase liver

damage. It can get better temporarily but will probably recur much

sooner without treatment. There are several theories on what causes

the pain, abnormal stretching of the membrane that surrounds the liver

due to swelling of liver during attacks or the stretching of the bile

ducts as bile backs up behind an infected / blocked area. But it

doesn't matter what the actual cause of the pain is, we can't get in

there to sooth the affected areas so must find other ways to deal with

the pain. I definitely would urge you to get treatment.

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

Most PSC seems to proceed at its own pace no matter what we do - some

things may slow it down a bit, but there is no proven treatment to

stop it. So yes, I think Tyler's PSC is getting worse. But that does

not mean he has to suffer through these attacks. They can be treated.

The attacks could have come at any point in his PSC journey. That they

occurred now does not indicate that Tyler is one, ten or thirty years

from needing a transplant. He should get treatment for these and other

symptoms as they show up.

Tim R

[Guest guest]

> ... 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?

Alk phos will usually go up during an attack. But it may not be

extremely high, others may not go up much at all. White Blood Count

(WBC) may go up too, if it is bacterial cholangitis.

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

relief

> for Tyler...

My doctors always said yes. Check with yours about what they

recommend. Be sure not to exceed the recommended dose as at doses

above that (4g/24 hrs for adults) Tylenol can be toxic to the liver.

Tylenol is usually recommended because other pain meds tend to reduce

clotting ability and that can be a problem in end stage liver disease.

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

do we

> watch for?

Unfortunately it dose come and go. How soon is hard to tell. Untreated

mine recurred every week or so. Treated it would be about a year or

so. Watch for a return of the same symptoms, especially fever. With

fever get treatment as soon as possible. I kept antibiotics on hand to

start treatment when I noticed an attack starting. Your doctor may

want to see Tyler before any treatment starts.

> 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?

Attacks tend to accelerate the scaring of the ducts and increase liver

damage. It can get better temporarily but will probably recur much

sooner without treatment. There are several theories on what causes

the pain, abnormal stretching of the membrane that surrounds the liver

due to swelling of liver during attacks or the stretching of the bile

ducts as bile backs up behind an infected / blocked area. But it

doesn't matter what the actual cause of the pain is, we can't get in

there to sooth the affected areas so must find other ways to deal with

the pain. I definitely would urge you to get treatment.

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

Most PSC seems to proceed at its own pace no matter what we do - some

things may slow it down a bit, but there is no proven treatment to

stop it. So yes, I think Tyler's PSC is getting worse. But that does

not mean he has to suffer through these attacks. They can be treated.

The attacks could have come at any point in his PSC journey. That they

occurred now does not indicate that Tyler is one, ten or thirty years

from needing a transplant. He should get treatment for these and other

symptoms as they show up.

Tim R

[Guest guest]

What great info Tim, thank you sooo much!!!! When you say treatment, you mean antibiotics? His doctor did not seem too concerned but he was feeling better after three days of agony when we saw the doctor. So, if it happens soon again, what do I demand for him? And I will demand it as I am tired of his pain being ignored.

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 but then again, Tyler was in the room so I could not get into too much detail as to not scare Tyler.

We went thru this 1 1/2 yrs ago when they kept insisting it was his UC and we knew otherwise. Until finally after over a month of severe pain, his tummy was so swelled and they admittted him with triple IVs for the attack. After he was diagnosed with PSC ..

Stevie Lynn Gedgaudas-OStos

sgedgaud@...

" Tim Romlein "

" Tim Romlein "

Sent by:

10/29/2008 11:50 AM

Please respond to

To

cc

Subject

Re: Bacterial cholangitis attack?

> ... 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?

Alk phos will usually go up during an attack. But it may not be

extremely high, others may not go up much at all. White Blood Count

(WBC) may go up too, if it is bacterial cholangitis.

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

relief

> for Tyler...

My doctors always said yes. Check with yours about what they

recommend. Be sure not to exceed the recommended dose as at doses

above that (4g/24 hrs for adults) Tylenol can be toxic to the liver.

Tylenol is usually recommended because other pain meds tend to reduce

clotting ability and that can be a problem in end stage liver disease.

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

do we

> watch for?

Unfortunately it dose come and go. How soon is hard to tell. Untreated

mine recurred every week or so. Treated it would be about a year or

so. Watch for a return of the same symptoms, especially fever. With

fever get treatment as soon as possible. I kept antibiotics on hand to

start treatment when I noticed an attack starting. Your doctor may

want to see Tyler before any treatment starts.

> 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?

Attacks tend to accelerate the scaring of the ducts and increase liver

damage. It can get better temporarily but will probably recur much

sooner without treatment. There are several theories on what causes

the pain, abnormal stretching of the membrane that surrounds the liver

due to swelling of liver during attacks or the stretching of the bile

ducts as bile backs up behind an infected / blocked area. But it

doesn't matter what the actual cause of the pain is, we can't get in

there to sooth the affected areas so must find other ways to deal with

the pain. I definitely would urge you to get treatment.

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

Most PSC seems to proceed at its own pace no matter what we do - some

things may slow it down a bit, but there is no proven treatment to

stop it. So yes, I think Tyler's PSC is getting worse. But that does

not mean he has to suffer through these attacks. They can be treated.

The attacks could have come at any point in his PSC journey. That they

occurred now does not indicate that Tyler is one, ten or thirty years

from needing a transplant. He should get treatment for these and other

symptoms as they show up.

Tim R

[Guest guest]

What great info Tim, thank you sooo much!!!! When you say treatment, you mean antibiotics? His doctor did not seem too concerned but he was feeling better after three days of agony when we saw the doctor. So, if it happens soon again, what do I demand for him? And I will demand it as I am tired of his pain being ignored.

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 but then again, Tyler was in the room so I could not get into too much detail as to not scare Tyler.

We went thru this 1 1/2 yrs ago when they kept insisting it was his UC and we knew otherwise. Until finally after over a month of severe pain, his tummy was so swelled and they admittted him with triple IVs for the attack. After he was diagnosed with PSC ..

Stevie Lynn Gedgaudas-OStos

sgedgaud@...

" Tim Romlein "

" Tim Romlein "

Sent by:

10/29/2008 11:50 AM

Please respond to

To

cc

Subject

Re: Bacterial cholangitis attack?

> ... 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?

Alk phos will usually go up during an attack. But it may not be

extremely high, others may not go up much at all. White Blood Count

(WBC) may go up too, if it is bacterial cholangitis.

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

relief

> for Tyler...

My doctors always said yes. Check with yours about what they

recommend. Be sure not to exceed the recommended dose as at doses

above that (4g/24 hrs for adults) Tylenol can be toxic to the liver.

Tylenol is usually recommended because other pain meds tend to reduce

clotting ability and that can be a problem in end stage liver disease.

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

do we

> watch for?

Unfortunately it dose come and go. How soon is hard to tell. Untreated

mine recurred every week or so. Treated it would be about a year or

so. Watch for a return of the same symptoms, especially fever. With

fever get treatment as soon as possible. I kept antibiotics on hand to

start treatment when I noticed an attack starting. Your doctor may

want to see Tyler before any treatment starts.

> 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?

Attacks tend to accelerate the scaring of the ducts and increase liver

damage. It can get better temporarily but will probably recur much

sooner without treatment. There are several theories on what causes

the pain, abnormal stretching of the membrane that surrounds the liver

due to swelling of liver during attacks or the stretching of the bile

ducts as bile backs up behind an infected / blocked area. But it

doesn't matter what the actual cause of the pain is, we can't get in

there to sooth the affected areas so must find other ways to deal with

the pain. I definitely would urge you to get treatment.

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

Most PSC seems to proceed at its own pace no matter what we do - some

things may slow it down a bit, but there is no proven treatment to

stop it. So yes, I think Tyler's PSC is getting worse. But that does

not mean he has to suffer through these attacks. They can be treated.

The attacks could have come at any point in his PSC journey. That they

occurred now does not indicate that Tyler is one, ten or thirty years

from needing a transplant. He should get treatment for these and other

symptoms as they show up.

Tim R

[Guest guest]

> ... When you say treatment, you mean antibiotics? ... So, if it

> happens soon again, what do I demand for him?

Yes, antibiotics are the standard treatment. In severe cases by IV,

usually just orally. If an ERCP with bile cultures has been done

recently then an antibiotic specific to what was cultured is

appropriate. Otherwise something like Cipro or Augmentin that

penetrates body cavities that aren't perfused by blood (like the

inside of the bile ducts).

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

> cholangtitis attacks do not really happen.

And I suppose the liver can experience no pain so Tyler's pain can't

be real or is coming from somewhere else. This hepatologist does not

sound like someone who is easy to work with. Maybe your pediatrician

would be more open to suggestions of how Tyler's attacks (if they

return) can be managed. All my meds for attacks were handled by my

PCP, although she did consult specialists to find out what were

appropriate options (this was 18 years ago when less was known about PSC).

A caveat about what I and anyone else here writes. I am not medically

trained. Anything I say or recommend should be taken to your doctor

for confirmation. Ideally you should be able to find a doctor who will

take the time to explain the situation so that you are as comfortable

with that explanation as you are with anything you get here. After all

you local doctor has hands on knowledge of Tyler and a ton of training

to go with it, and should be a much better judge of the situation.

Tim R

[Guest guest]

> ... When you say treatment, you mean antibiotics? ... So, if it

> happens soon again, what do I demand for him?

Yes, antibiotics are the standard treatment. In severe cases by IV,

usually just orally. If an ERCP with bile cultures has been done

recently then an antibiotic specific to what was cultured is

appropriate. Otherwise something like Cipro or Augmentin that

penetrates body cavities that aren't perfused by blood (like the

inside of the bile ducts).

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

> cholangtitis attacks do not really happen.

And I suppose the liver can experience no pain so Tyler's pain can't

be real or is coming from somewhere else. This hepatologist does not

sound like someone who is easy to work with. Maybe your pediatrician

would be more open to suggestions of how Tyler's attacks (if they

return) can be managed. All my meds for attacks were handled by my

PCP, although she did consult specialists to find out what were

appropriate options (this was 18 years ago when less was known about PSC).

A caveat about what I and anyone else here writes. I am not medically

trained. Anything I say or recommend should be taken to your doctor

for confirmation. Ideally you should be able to find a doctor who will

take the time to explain the situation so that you are as comfortable

with that explanation as you are with anything you get here. After all

you local doctor has hands on knowledge of Tyler and a ton of training

to go with it, and should be a much better judge of the situation.

Tim R