Peg's I'm confused message

[Guest guest]

Peg,

It's hard for us amateur laypersons to be able to understand all the

different aspects of this disease and the various treatments for it (even

the docs who are treating us don't fully understand it nor do they have

answers). As is obvious from all the various symptoms and treatments that

are discussed on here, there is a lot more to learn about PSC.

It sounds to me like Phil has some pretty bad stricturing going on and it is

scaring the doctor away from intervention. I guess it's hard to second-guess

him when the folks at UCLA say he's the best at what he does. Phil's

situation sounds somewhat similar to mine, although I've never experienced

the kind of scream-inducing pain during an ERCP that Phil did. It's kinda

hard to believe they didn't knock him out a little better than that. Only on

a couple of occasions during my ERCP's did I become somewhat aware of what

was going on, but this only made me aware that I was gagging - these times

this occurred when the doctor was in there a little longer than he had

original thought he was going to be and I started to come out of it a little

too soon. However, even in those situations he just " juiced me up " a little

more through the IV when I started the gagging and I went under again.

Phil's episode with the 10 day hospitalization after his ERCP sounds close

to my situation in January. As mentioned earlier, I had a routine stent

replacement on January 10 and felt fine afterward until about two weeks

later. All of a sudden on a Sunday afternoon the cholangitis pain, chills,

fever, etc. got really bad - the pain was close to the worst I'd ever had.

When I called the doctor this time they told me to go to the ER (normally I

just start on CIPRO and let it do its job killing the infection). But they

admitted me and I ended up in there six days (not 10 like Phil). What had

happened was that the bacteria that caused this particular episode did not

react to CIPRO. It was one of those tougher bacteria and it had begun to

course throughout my bloood stream. I was also more jaundiced than I had

ever been before, and it stayed with me longer than on any previous

occasion. When I was released from the hospital I was still on IV

antibiotics for another 10 days at home to clear up the infection and make

sure it was gone.

As far as the degree of stricturing, there also appears to be some degree of

similarity. Last fall when I had an episode and had my stent changed earlier

than scheduled, my doctor told me that he and his associates had been

talking about trying dilation the next time instead of constantly changing

stents (I had moved up from every 90 days to every 60 days because of

recurring bouts of cholangitis occurring before reaching the next 90-day

" oil change " ). Apparently one of his associates had just been to a

conference last fall where one of the presenters talked about having better,

longer-lasting luck with dilation as opposed to stenting. So he told me that

when we would do the January ERCP he would determine then whether to see if

he could do some dilating and leave the stent out. However, when he did the

ERCP in January he told me that, after looking at the strictures in the

common bile duct and how bad they were, he decided it would be too difficult

to dilate and it might cause future problems making it difficult to get back

in there if it closed up more. So he went ahead and replaced the stent (this

is also when I think the bacteria was introduced that caused the infection

that acted up two weeks later and hospitalized me). The strange thing is

that when they did go back in during the hospitalization three weeks later

they took the stent out, dilated the common bile duct, and did not replace

the stent! Go figure!!

Anyway, I just realized I've been rambling on here for quite awhile, and

don't know if I've answered any of your questions. As many of us have said

on here before, every situation seems to be a little different and every

doctor or group of doctors seems to have a different way of dealing with

each case. At any rate, I think by us sharing these situations among each

other we get armed with enough anecdotal stuff to discuss with our docs.

Have a nice week. Let me know if you have any more specific questions.

Bill Dolan

> ?/ Prednisone ?

> > >

> > >

> > > >Hi ,

> > > >I don't want to bother you because I understand you need

> your rest but

> > > >when you feel up to it I 'm curious about a few things.

> What was your

> > > >bloodwork like before transplant-bilirubin levels, alk levels etc,

> > > >bleeding time? Did you have any edema, ascites, or varices?

> How long

> > > >were you on the list? Did you have any bowel problems

> associated with

> > > >the PSC? This whole list process is confusing with the wait time and

> > > >point process. Its scary because although I'm fatiqued and

> have probs

> > > >with UC my bilirubin just dropped two point from 4.5 to 2.5

> on my last

> > > >blood test and I quess that effects my listing. But I don't want a

> > > >transplant too soon If I can still have an acceptable quality of life

> > > >and work but if its enevitable I don't want to wait to a

> point where I

> > > >may not make it through the surgery. Did you doctors talk

> to you at all

> > > >about this?

> > > >Also, Is there anyone on prednisone for UC? After many drug

> trials, I

> > > >was just put in 15mg a day. (5mg 3x a day).

> > > >Thanks,

> > > >Michele

> > > >

> > > >

> > >

> >------------------------------------------------------------------------

> > > >!! FREE !! DOWNLOAD NOW !!

> > > >Animated Interactive Cartoon Character for Windows.

> > > >http://clickhere./click/242

> > > >

> > > >

> > > >

[Guest guest]

Bill,

I don't know if when I was describing the ERCP procedure if I said that Phil

went into the excruciating pain as soon as the doctor injected the dye. He said

at that point he new he had PSC as he suspected. Because Phil was in such pain

he got out right away. Apprently the strictures were so bad that even the dye

going through them put him into the pain and the doctor is afraid that going

back in would be very dangerous and won't do it unless he absolutely has to.

That time they used something along with the Cipro and but I can't remember what

it was. I'm suprised I remembered what I did, it was all such a shock. The

last 2 times the Cipro worked in a day or two. He says that Phil has too many

strictures for stenting to do any good. Sounds pretty advanced, huh. But so

far the liver is okay and he has gone 6 weeks now since an attack. We've gotten

so off our diet during this move I'm surprised he hasn't gotten another attack.

Thank God he is so much better than I about following his diet. Thanks for your

answers. I was getting scared that maybe his doctor wasn't as good as he says

but we really do feel like they know what they are doing.

Peg A

Bill Dolan wrote:

> Peg,

>

> It's hard for us amateur laypersons to be able to understand all the

> different aspects of this disease and the various treatments for it (even

> the docs who are treating us don't fully understand it nor do they have

> answers). As is obvious from all the various symptoms and treatments that

> are discussed on here, there is a lot more to learn about PSC.

>

> It sounds to me like Phil has some pretty bad stricturing going on and it is

> scaring the doctor away from intervention. I guess it's hard to second-guess

> him when the folks at UCLA say he's the best at what he does. Phil's

> situation sounds somewhat similar to mine, although I've never experienced

> the kind of scream-inducing pain during an ERCP that Phil did. It's kinda

> hard to believe they didn't knock him out a little better than that. Only on

> a couple of occasions during my ERCP's did I become somewhat aware of what

> was going on, but this only made me aware that I was gagging - these times

> this occurred when the doctor was in there a little longer than he had

> original thought he was going to be and I started to come out of it a little

> too soon. However, even in those situations he just " juiced me up " a little

> more through the IV when I started the gagging and I went under again.

>

> Phil's episode with the 10 day hospitalization after his ERCP sounds close

> to my situation in January. As mentioned earlier, I had a routine stent

> replacement on January 10 and felt fine afterward until about two weeks

> later. All of a sudden on a Sunday afternoon the cholangitis pain, chills,

> fever, etc. got really bad - the pain was close to the worst I'd ever had.

> When I called the doctor this time they told me to go to the ER (normally I

> just start on CIPRO and let it do its job killing the infection). But they

> admitted me and I ended up in there six days (not 10 like Phil). What had

> happened was that the bacteria that caused this particular episode did not

> react to CIPRO. It was one of those tougher bacteria and it had begun to

> course throughout my bloood stream. I was also more jaundiced than I had

> ever been before, and it stayed with me longer than on any previous

> occasion. When I was released from the hospital I was still on IV

> antibiotics for another 10 days at home to clear up the infection and make

> sure it was gone.

>

> As far as the degree of stricturing, there also appears to be some degree of

> similarity. Last fall when I had an episode and had my stent changed earlier

> than scheduled, my doctor told me that he and his associates had been

> talking about trying dilation the next time instead of constantly changing

> stents (I had moved up from every 90 days to every 60 days because of

> recurring bouts of cholangitis occurring before reaching the next 90-day

> " oil change " ). Apparently one of his associates had just been to a

> conference last fall where one of the presenters talked about having better,

> longer-lasting luck with dilation as opposed to stenting. So he told me that

> when we would do the January ERCP he would determine then whether to see if

> he could do some dilating and leave the stent out. However, when he did the

> ERCP in January he told me that, after looking at the strictures in the

> common bile duct and how bad they were, he decided it would be too difficult

> to dilate and it might cause future problems making it difficult to get back

> in there if it closed up more. So he went ahead and replaced the stent (this

> is also when I think the bacteria was introduced that caused the infection

> that acted up two weeks later and hospitalized me). The strange thing is

> that when they did go back in during the hospitalization three weeks later

> they took the stent out, dilated the common bile duct, and did not replace

> the stent! Go figure!!

>

> Anyway, I just realized I've been rambling on here for quite awhile, and

> don't know if I've answered any of your questions. As many of us have said

> on here before, every situation seems to be a little different and every

> doctor or group of doctors seems to have a different way of dealing with

> each case. At any rate, I think by us sharing these situations among each

> other we get armed with enough anecdotal stuff to discuss with our docs.

>

> Have a nice week. Let me know if you have any more specific questions.

>

> Bill Dolan

>

> > ?/ Prednisone ?

> > > >

> > > >

> > > > >Hi ,

> > > > >I don't want to bother you because I understand you need

> > your rest but

> > > > >when you feel up to it I 'm curious about a few things.

> > What was your

> > > > >bloodwork like before transplant-bilirubin levels, alk levels etc,

> > > > >bleeding time? Did you have any edema, ascites, or varices?

> > How long

> > > > >were you on the list? Did you have any bowel problems

> > associated with

> > > > >the PSC? This whole list process is confusing with the wait time and

> > > > >point process. Its scary because although I'm fatiqued and

> > have probs

> > > > >with UC my bilirubin just dropped two point from 4.5 to 2.5

> > on my last

> > > > >blood test and I quess that effects my listing. But I don't want a

> > > > >transplant too soon If I can still have an acceptable quality of life

> > > > >and work but if its enevitable I don't want to wait to a

> > point where I

> > > > >may not make it through the surgery. Did you doctors talk

> > to you at all

> > > > >about this?

> > > > >Also, Is there anyone on prednisone for UC? After many drug

> > trials, I

> > > > >was just put in 15mg a day. (5mg 3x a day).

> > > > >Thanks,

> > > > >Michele

> > > > >

> > > > >

> > > >

> > >------------------------------------------------------------------------

> > > > >!! FREE !! DOWNLOAD NOW !!

> > > > >Animated Interactive Cartoon Character for Windows.

> > > > >http://clickhere./click/242

> > > > >

> > > > >

> > > > >

[Guest guest]

Hi Peg--

Just wanted to pass on the fact that I was told pretty much the same thing

as your husband... the strictures were throughout all of my intra and extra

hepatic ducts and that dilation would be of no use to me. The hepatologist

at Beth Israel in Boston called it " classic PSC " meaning the " beading " or

scarring and roughness is throughout the ducts. My ERCP was totally

uneventful, though. In me, too, the biopsy showed no detectable liver

damage. Apparently those results can depend on the liver location from which

the cells were taken so it is not conclusive. But at least it shows that

there are some areas of the liver that are not badly damaged.

Anyway, I'm pretty much symptom-free right now despite all that I described,

so I feel lucky about that. Hope Phil is doing OK, today, too.

H.

PS- Has anyone else taken a look at the " pictures " from their ERCP's? Seems

that people would have a better understanding of what's happening if they

could see what it looked like vs. what it should look like. That and

discussion with the specialist might also make it pretty clear why a

treatment(dilation, stenting,surgery) might help for one of us, but not for

another.

?/ Prednisone ?

> > > >

> > > >

> > > > >Hi ,

> > > > >I don't want to bother you because I understand you need

> > your rest but

> > > > >when you feel up to it I 'm curious about a few things.

> > What was your

> > > > >bloodwork like before transplant-bilirubin levels, alk levels etc,

> > > > >bleeding time? Did you have any edema, ascites, or varices?

> > How long

> > > > >were you on the list? Did you have any bowel problems

> > associated with

> > > > >the PSC? This whole list process is confusing with the wait time

and

> > > > >point process. Its scary because although I'm fatiqued and

> > have probs

> > > > >with UC my bilirubin just dropped two point from 4.5 to 2.5

> > on my last

> > > > >blood test and I quess that effects my listing. But I don't want a

> > > > >transplant too soon If I can still have an acceptable quality of

life

> > > > >and work but if its enevitable I don't want to wait to a

> > point where I

> > > > >may not make it through the surgery. Did you doctors talk

> > to you at all

> > > > >about this?

> > > > >Also, Is there anyone on prednisone for UC? After many drug

> > trials, I

> > > > >was just put in 15mg a day. (5mg 3x a day).

> > > > >Thanks,

> > > > >Michele

> > > > >

> > > > >

> > > >

> >

>------------------------------------------------------------------------

> > > > >!! FREE !! DOWNLOAD NOW !!

> > > > >Animated Interactive Cartoon Character for Windows.

> > > > >http://clickhere./click/242

> > > > >

> > > > >

> > > > >

[Guest guest]

Thanks ,

Phil is doing okay for now, at least I should say no signs of cholangitis

attack. It's been six weeks since the last. He is very tired from the

remodeling and moving and his joints and especially his hands hurt real bad.

Course I don't have the disease and my body hurts too. We're getting too old

for this moving stuff. Glad you are free from symptoms right now, I guess that

the best we could ask for and we're thankful when you guys are in that state.

Phil does get depressed about not being able to use his hands without much

pain. He used to enjoy doing this building stuff but it's tuff work now. We

should be through pretty soon and he'll be able to sit and relax for awhile.

Peg A

SHCowmeadow wrote:

> Hi Peg--

> Just wanted to pass on the fact that I was told pretty much the same thing

> as your husband... the strictures were throughout all of my intra and extra

> hepatic ducts and that dilation would be of no use to me. The hepatologist

> at Beth Israel in Boston called it " classic PSC " meaning the " beading " or

> scarring and roughness is throughout the ducts. My ERCP was totally

> uneventful, though. In me, too, the biopsy showed no detectable liver

> damage. Apparently those results can depend on the liver location from which

> the cells were taken so it is not conclusive. But at least it shows that

> there are some areas of the liver that are not badly damaged.

>

> Anyway, I'm pretty much symptom-free right now despite all that I described,

> so I feel lucky about that. Hope Phil is doing OK, today, too.

>

> H.

> PS- Has anyone else taken a look at the " pictures " from their ERCP's? Seems

> that people would have a better understanding of what's happening if they

> could see what it looked like vs. what it should look like. That and

> discussion with the specialist might also make it pretty clear why a

> treatment(dilation, stenting,surgery) might help for one of us, but not for

> another.

>

> ?/ Prednisone ?

> > > > >

> > > > >

> > > > > >Hi ,

> > > > > >I don't want to bother you because I understand you need

> > > your rest but

> > > > > >when you feel up to it I 'm curious about a few things.

> > > What was your

> > > > > >bloodwork like before transplant-bilirubin levels, alk levels etc,

> > > > > >bleeding time? Did you have any edema, ascites, or varices?

> > > How long

> > > > > >were you on the list? Did you have any bowel problems

> > > associated with

> > > > > >the PSC? This whole list process is confusing with the wait time

> and

> > > > > >point process. Its scary because although I'm fatiqued and

> > > have probs

> > > > > >with UC my bilirubin just dropped two point from 4.5 to 2.5

> > > on my last

> > > > > >blood test and I quess that effects my listing. But I don't want a

> > > > > >transplant too soon If I can still have an acceptable quality of

> life

> > > > > >and work but if its enevitable I don't want to wait to a

> > > point where I

> > > > > >may not make it through the surgery. Did you doctors talk

> > > to you at all

> > > > > >about this?

> > > > > >Also, Is there anyone on prednisone for UC? After many drug

> > > trials, I

> > > > > >was just put in 15mg a day. (5mg 3x a day).

> > > > > >Thanks,

> > > > > >Michele

> > > > > >

> > > > > >

> > > > >

> > >

> >------------------------------------------------------------------------

> > > > > >!! FREE !! DOWNLOAD NOW !!

> > > > > >Animated Interactive Cartoon Character for Windows.

> > > > > >http://clickhere./click/242

> > > > > >

> > > > > >

> > > > > >