Re: Newbie sharing her story and looking for info

[Guest guest]

> At this point, I am wondering if anyone can relate to my

sypmtoms. I have never been

> able to find anyone who can. If anyone can shed any light on what

they think is

> happening to me, I would be very grateful. As I said, I don't

know yet if it's PSC, and

> I'm not exactly looking for someone here to diagnose me. That

will happen soon

> enough. I guess I'm just looking for some support, info,

guidance, anything anyone

> is willing to offer.

>

Dear ,

Your symptoms sound VERY familiar! When I was in my mid-20's, I went

through a lot of what you're experiencing now. My " episodes " - now I

know them as cholangitis attacks, came on a week before my period,

when I ate fatty foods (I thought it was spicy food, too, but that

was just a coincidence), and whenever I was run down. I was in grad

school at the time, so I went to the doctor thinking that I had an

ulcer - the pain was right under my sternum, and since it was

associated with eating, I assummed something related to the stomach.

I also had the chills and fever, but mine only ever got up to 100*

most of the time. My doctor said I was causing my temperature to

rise artificially when I got into a bath of hot water to help my

chills. She asked me if I kept my apartment too cold - ultilities

were included and that baby was cranked! Ugh!

I eventually sought out a good specialist (after several tries with

not so good ones), and did all the testing to find out that I had

PSC. It was a hard road, but I felt so relieved once I had a

diagnosis that I didn't really care what it meant - I wasn't CRAZY

and I could live with anything as long as I was sane! I went on to

have one child (in 2000) and last year, I had a liver transplant

once things had gotten pretty bad. Looking back, I think I started

my symptoms around 1990, so I did have a lot of years before

diagnosis and transplant.

Getting a diagnosis of PSC isn't fun, but it isn't the end of the

world, either. Educating yourself about the disease and how it

progresses goes a long way toward helping you to be proactive in

managing your symptoms. For example, I later learned that I had IBD

because my doctor did the colonoscopy to look for it. I was not

symptomatic with that at all, so knowing to look for it was helpful.

So, get the tests done and see what happens. You are NOT alone in

this and we'll all be here to answer your questions along the way.

Let us know how your June 8th appointment goes...

Best of luck,

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2006, Partial Portal

Vein Thrombosis 7/20/2005, 14 PTCs with drain placements/

replacements from 9/2005-3/2006, 3 sinus surgeries since 1/2006, and

currently considering a diagnosis of cystic fibrosis.

>

[Guest guest]

> At this point, I am wondering if anyone can relate to my

sypmtoms. I have never been

> able to find anyone who can. If anyone can shed any light on what

they think is

> happening to me, I would be very grateful. As I said, I don't

know yet if it's PSC, and

> I'm not exactly looking for someone here to diagnose me. That

will happen soon

> enough. I guess I'm just looking for some support, info,

guidance, anything anyone

> is willing to offer.

>

Dear ,

Your symptoms sound VERY familiar! When I was in my mid-20's, I went

through a lot of what you're experiencing now. My " episodes " - now I

know them as cholangitis attacks, came on a week before my period,

when I ate fatty foods (I thought it was spicy food, too, but that

was just a coincidence), and whenever I was run down. I was in grad

school at the time, so I went to the doctor thinking that I had an

ulcer - the pain was right under my sternum, and since it was

associated with eating, I assummed something related to the stomach.

I also had the chills and fever, but mine only ever got up to 100*

most of the time. My doctor said I was causing my temperature to

rise artificially when I got into a bath of hot water to help my

chills. She asked me if I kept my apartment too cold - ultilities

were included and that baby was cranked! Ugh!

I eventually sought out a good specialist (after several tries with

not so good ones), and did all the testing to find out that I had

PSC. It was a hard road, but I felt so relieved once I had a

diagnosis that I didn't really care what it meant - I wasn't CRAZY

and I could live with anything as long as I was sane! I went on to

have one child (in 2000) and last year, I had a liver transplant

once things had gotten pretty bad. Looking back, I think I started

my symptoms around 1990, so I did have a lot of years before

diagnosis and transplant.

Getting a diagnosis of PSC isn't fun, but it isn't the end of the

world, either. Educating yourself about the disease and how it

progresses goes a long way toward helping you to be proactive in

managing your symptoms. For example, I later learned that I had IBD

because my doctor did the colonoscopy to look for it. I was not

symptomatic with that at all, so knowing to look for it was helpful.

So, get the tests done and see what happens. You are NOT alone in

this and we'll all be here to answer your questions along the way.

Let us know how your June 8th appointment goes...

Best of luck,

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2006, Partial Portal

Vein Thrombosis 7/20/2005, 14 PTCs with drain placements/

replacements from 9/2005-3/2006, 3 sinus surgeries since 1/2006, and

currently considering a diagnosis of cystic fibrosis.

>

[Guest guest]

> At this point, I am wondering if anyone can relate to my

sypmtoms. I have never been

> able to find anyone who can. If anyone can shed any light on what

they think is

> happening to me, I would be very grateful. As I said, I don't

know yet if it's PSC, and

> I'm not exactly looking for someone here to diagnose me. That

will happen soon

> enough. I guess I'm just looking for some support, info,

guidance, anything anyone

> is willing to offer.

>

Dear ,

Your symptoms sound VERY familiar! When I was in my mid-20's, I went

through a lot of what you're experiencing now. My " episodes " - now I

know them as cholangitis attacks, came on a week before my period,

when I ate fatty foods (I thought it was spicy food, too, but that

was just a coincidence), and whenever I was run down. I was in grad

school at the time, so I went to the doctor thinking that I had an

ulcer - the pain was right under my sternum, and since it was

associated with eating, I assummed something related to the stomach.

I also had the chills and fever, but mine only ever got up to 100*

most of the time. My doctor said I was causing my temperature to

rise artificially when I got into a bath of hot water to help my

chills. She asked me if I kept my apartment too cold - ultilities

were included and that baby was cranked! Ugh!

I eventually sought out a good specialist (after several tries with

not so good ones), and did all the testing to find out that I had

PSC. It was a hard road, but I felt so relieved once I had a

diagnosis that I didn't really care what it meant - I wasn't CRAZY

and I could live with anything as long as I was sane! I went on to

have one child (in 2000) and last year, I had a liver transplant

once things had gotten pretty bad. Looking back, I think I started

my symptoms around 1990, so I did have a lot of years before

diagnosis and transplant.

Getting a diagnosis of PSC isn't fun, but it isn't the end of the

world, either. Educating yourself about the disease and how it

progresses goes a long way toward helping you to be proactive in

managing your symptoms. For example, I later learned that I had IBD

because my doctor did the colonoscopy to look for it. I was not

symptomatic with that at all, so knowing to look for it was helpful.

So, get the tests done and see what happens. You are NOT alone in

this and we'll all be here to answer your questions along the way.

Let us know how your June 8th appointment goes...

Best of luck,

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2006, Partial Portal

Vein Thrombosis 7/20/2005, 14 PTCs with drain placements/

replacements from 9/2005-3/2006, 3 sinus surgeries since 1/2006, and

currently considering a diagnosis of cystic fibrosis.

>

[Guest guest]

> The doc mentioned that my symptoms seemed to indicate PSC. And so

now I'm

> freaking out about it.

,

Your pain, fevers and elevated blood test results are consistent with

PSC and bacterial cholangitis attacks. Getting a diagnosis may allow a

course of treatment that can get you back to a normal life, without

the pain and fevers, that may very well continue with few symptoms for

10, 20 or more years.

A diagnosis of PSC may sound forbidding, but it may actually allow you

to stabilize your health care with an established treatment routine.

No need to freak out, just take things one day at a time. If you have

questions, someone here can usually provide something to satisfy your

curiosity.

Tim R, PSC dx 1989, liver tx 1998, recurrent PSC 2002

[Guest guest]

> The doc mentioned that my symptoms seemed to indicate PSC. And so

now I'm

> freaking out about it.

,

Your pain, fevers and elevated blood test results are consistent with

PSC and bacterial cholangitis attacks. Getting a diagnosis may allow a

course of treatment that can get you back to a normal life, without

the pain and fevers, that may very well continue with few symptoms for

10, 20 or more years.

A diagnosis of PSC may sound forbidding, but it may actually allow you

to stabilize your health care with an established treatment routine.

No need to freak out, just take things one day at a time. If you have

questions, someone here can usually provide something to satisfy your

curiosity.

Tim R, PSC dx 1989, liver tx 1998, recurrent PSC 2002

[Guest guest]

Deb, You added details that were similar to me, too. I am sure I've raised my

body

temperature by taking those hot baths. I bet it did something to my heartrate,

too.

I don't know whether to be relieved or disappointed. It doesn't matter either

way,

what will happen will happen. For a long time now I've just been wishing for a

diagnosis because I didn't want to continue going through life to find out 10

years

down the road that I could have done something to save myself. So 3 years is

better

than 10.

I have a couple more questions now regarding the bacterial cholangitis attacks.

Does

a cholangitis attack have to be bacterial? Yours sound like they weren't. One

of my

local docs (not the specialist) thought that my bile ducts might be spasming and

causing the damage to my liver. Were you able to avoid your triggers, or did

you

have to be medicated for the PSC?

Thank you so much for your response. Whether I like the outcome or not, it's

better

to start facing what's happening to me than to ignore it. I never wanted to

ignore it,

but I never thought it would be this serious.

Thanks again.

> > At this point, I am wondering if anyone can relate to my

> sypmtoms. I have never been

> > able to find anyone who can. If anyone can shed any light on what

> they think is

> > happening to me, I would be very grateful. As I said, I don't

> know yet if it's PSC, and

> > I'm not exactly looking for someone here to diagnose me. That

> will happen soon

> > enough. I guess I'm just looking for some support, info,

> guidance, anything anyone

> > is willing to offer.

> >

>

>

> Dear ,

> Your symptoms sound VERY familiar! When I was in my mid-20's, I went

> through a lot of what you're experiencing now. My " episodes " - now I

> know them as cholangitis attacks, came on a week before my period,

> when I ate fatty foods (I thought it was spicy food, too, but that

> was just a coincidence), and whenever I was run down. I was in grad

> school at the time, so I went to the doctor thinking that I had an

> ulcer - the pain was right under my sternum, and since it was

> associated with eating, I assummed something related to the stomach.

> I also had the chills and fever, but mine only ever got up to 100*

> most of the time. My doctor said I was causing my temperature to

> rise artificially when I got into a bath of hot water to help my

> chills. She asked me if I kept my apartment too cold - ultilities

> were included and that baby was cranked! Ugh!

>

> I eventually sought out a good specialist (after several tries with

> not so good ones), and did all the testing to find out that I had

> PSC. It was a hard road, but I felt so relieved once I had a

> diagnosis that I didn't really care what it meant - I wasn't CRAZY

> and I could live with anything as long as I was sane! I went on to

> have one child (in 2000) and last year, I had a liver transplant

> once things had gotten pretty bad. Looking back, I think I started

> my symptoms around 1990, so I did have a lot of years before

> diagnosis and transplant.

>

> Getting a diagnosis of PSC isn't fun, but it isn't the end of the

> world, either. Educating yourself about the disease and how it

> progresses goes a long way toward helping you to be proactive in

> managing your symptoms. For example, I later learned that I had IBD

> because my doctor did the colonoscopy to look for it. I was not

> symptomatic with that at all, so knowing to look for it was helpful.

> So, get the tests done and see what happens. You are NOT alone in

> this and we'll all be here to answer your questions along the way.

> Let us know how your June 8th appointment goes...

>

> Best of luck,

> Deb in VA

> PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2006, Partial Portal

> Vein Thrombosis 7/20/2005, 14 PTCs with drain placements/

> replacements from 9/2005-3/2006, 3 sinus surgeries since 1/2006, and

> currently considering a diagnosis of cystic fibrosis.

> >

>

[Guest guest]

,

In the beginning, my cholangitis attacks were associated with my

diseased gallbladder as well as PSC. Once I had the gallbladder out,

things got better for a while. They were bacterial in nature, and

once I was diagnosed, when I had them I automatically went on

antibiotics to take care of them. I found that with the antibiotics,

they didn't last nearly as long or knock me down as hard - at first.

As things progressed, I was on antibiotics all the time. It wasn't

fun, but it was what I needed to do to get by until I got a new

liver. Cholangitis attacks that aren't treated can lead to sepsis

and death, so it is imperative that you seek treatment for them when

they occur. I know that's hard when you haven't even been diagnosed,

but you should press for the antibiotics regardless.

I did learn to avoid high-fat foods - unless I couldn't stand it

anymore. Often, I just would have some pain and no fever or a full-

blown attack. I learned to read my body very carefully. I could tell

when things weren't going well and how long to wait to see the doc,

etc. It is just a learning curve. Other than the antibiotics, I took

ursodiol to thin my bile. There are several studies ongoing to

determine if using ursodiol (also known as actigall) can prolong

time to transplant. I didn't stay on it the entire time I was sick

because I was one of the few people for whom this drug makes the

more itchy. (Itching is associated with PSC by itself, but I itch

whenever I'm urso - even now, post-transplant - if I take the full

three pills a day that I'm supposed to.) I want my new bile ducts to

stay open (not recurrent PSC - problems from surgery - long story),

so I continue to take it despite some mild-moderate itching.

I understand about not wanting this diagnosis, but wanting one all

the same. Diagnosis is an incredibly tough time. You have to allow

yourself to feel some emotions that are pretty scary. You have to

brace yourself for the uncertainty that lies ahead. As we're always

fond of saying around here, though, live your life to its fullest

and enjoy every minute - PSC might not be the thing that gets you in

the long or short run. The one major bonus to having PSC is that we

get to appreciate every blessed day we have to spend with friends

and family in a way that people who breeze through life seldom can

fathom.

I hope that this helps in some small way. I still am more apt to get

sick the week before my period - in any way that one can get sick -

so I find it interesting that you're experiencing the same thing.

I've had doctors scoff at this, and others have believed me, noting

the effect that estrogen and progesterone have on the liver. Thanks

for sharing your story, and keep asking your questions! A good place

to look is at the FAQ page on www.psc-literature.org.

Take care,

Deb in VA

PSC 1998, UC 1999, Listed ltx 2001, LDLTX 5/19/2005, Partial Portal

Vein Thrombosis 7/20/2005, 14 PTCs with drain placements/

replacements from 9/2005 - 3/2006, 3 sinus surgeries since 1/2006,

havin' a good day today.

[Guest guest]

,

In the beginning, my cholangitis attacks were associated with my

diseased gallbladder as well as PSC. Once I had the gallbladder out,

things got better for a while. They were bacterial in nature, and

once I was diagnosed, when I had them I automatically went on

antibiotics to take care of them. I found that with the antibiotics,

they didn't last nearly as long or knock me down as hard - at first.

As things progressed, I was on antibiotics all the time. It wasn't

fun, but it was what I needed to do to get by until I got a new

liver. Cholangitis attacks that aren't treated can lead to sepsis

and death, so it is imperative that you seek treatment for them when

they occur. I know that's hard when you haven't even been diagnosed,

but you should press for the antibiotics regardless.

I did learn to avoid high-fat foods - unless I couldn't stand it

anymore. Often, I just would have some pain and no fever or a full-

blown attack. I learned to read my body very carefully. I could tell

when things weren't going well and how long to wait to see the doc,

etc. It is just a learning curve. Other than the antibiotics, I took

ursodiol to thin my bile. There are several studies ongoing to

determine if using ursodiol (also known as actigall) can prolong

time to transplant. I didn't stay on it the entire time I was sick

because I was one of the few people for whom this drug makes the

more itchy. (Itching is associated with PSC by itself, but I itch

whenever I'm urso - even now, post-transplant - if I take the full

three pills a day that I'm supposed to.) I want my new bile ducts to

stay open (not recurrent PSC - problems from surgery - long story),

so I continue to take it despite some mild-moderate itching.

I understand about not wanting this diagnosis, but wanting one all

the same. Diagnosis is an incredibly tough time. You have to allow

yourself to feel some emotions that are pretty scary. You have to

brace yourself for the uncertainty that lies ahead. As we're always

fond of saying around here, though, live your life to its fullest

and enjoy every minute - PSC might not be the thing that gets you in

the long or short run. The one major bonus to having PSC is that we

get to appreciate every blessed day we have to spend with friends

and family in a way that people who breeze through life seldom can

fathom.

I hope that this helps in some small way. I still am more apt to get

sick the week before my period - in any way that one can get sick -

so I find it interesting that you're experiencing the same thing.

I've had doctors scoff at this, and others have believed me, noting

the effect that estrogen and progesterone have on the liver. Thanks

for sharing your story, and keep asking your questions! A good place

to look is at the FAQ page on www.psc-literature.org.

Take care,

Deb in VA

PSC 1998, UC 1999, Listed ltx 2001, LDLTX 5/19/2005, Partial Portal

Vein Thrombosis 7/20/2005, 14 PTCs with drain placements/

replacements from 9/2005 - 3/2006, 3 sinus surgeries since 1/2006,

havin' a good day today.

[Guest guest]

,

In the beginning, my cholangitis attacks were associated with my

diseased gallbladder as well as PSC. Once I had the gallbladder out,

things got better for a while. They were bacterial in nature, and

once I was diagnosed, when I had them I automatically went on

antibiotics to take care of them. I found that with the antibiotics,

they didn't last nearly as long or knock me down as hard - at first.

As things progressed, I was on antibiotics all the time. It wasn't

fun, but it was what I needed to do to get by until I got a new

liver. Cholangitis attacks that aren't treated can lead to sepsis

and death, so it is imperative that you seek treatment for them when

they occur. I know that's hard when you haven't even been diagnosed,

but you should press for the antibiotics regardless.

I did learn to avoid high-fat foods - unless I couldn't stand it

anymore. Often, I just would have some pain and no fever or a full-

blown attack. I learned to read my body very carefully. I could tell

when things weren't going well and how long to wait to see the doc,

etc. It is just a learning curve. Other than the antibiotics, I took

ursodiol to thin my bile. There are several studies ongoing to

determine if using ursodiol (also known as actigall) can prolong

time to transplant. I didn't stay on it the entire time I was sick

because I was one of the few people for whom this drug makes the

more itchy. (Itching is associated with PSC by itself, but I itch

whenever I'm urso - even now, post-transplant - if I take the full

three pills a day that I'm supposed to.) I want my new bile ducts to

stay open (not recurrent PSC - problems from surgery - long story),

so I continue to take it despite some mild-moderate itching.

I understand about not wanting this diagnosis, but wanting one all

the same. Diagnosis is an incredibly tough time. You have to allow

yourself to feel some emotions that are pretty scary. You have to

brace yourself for the uncertainty that lies ahead. As we're always

fond of saying around here, though, live your life to its fullest

and enjoy every minute - PSC might not be the thing that gets you in

the long or short run. The one major bonus to having PSC is that we

get to appreciate every blessed day we have to spend with friends

and family in a way that people who breeze through life seldom can

fathom.

I hope that this helps in some small way. I still am more apt to get

sick the week before my period - in any way that one can get sick -

so I find it interesting that you're experiencing the same thing.

I've had doctors scoff at this, and others have believed me, noting

the effect that estrogen and progesterone have on the liver. Thanks

for sharing your story, and keep asking your questions! A good place

to look is at the FAQ page on www.psc-literature.org.

Take care,

Deb in VA

PSC 1998, UC 1999, Listed ltx 2001, LDLTX 5/19/2005, Partial Portal

Vein Thrombosis 7/20/2005, 14 PTCs with drain placements/

replacements from 9/2005 - 3/2006, 3 sinus surgeries since 1/2006,

havin' a good day today.

[Guest guest]

Thanks again, Deb.

Can I share some more detail about my attacks? I'm curious about what you said

about the meds making your attacks not knock you out for as long. Mine only

last for

8-12 hours. The pain will only last for about an hour or so because the

antacids will

eventually help (I think). The fever and chills happen after. Within 12 hours

if you

looked at me you'd have no idea what I had just been through, except that I'd be

so

tired because it had kept me up the night before. When I was admitted into the

ICU

because of the low BP, they released me within 12 hours because everything was

back

to normal, except my ALT, AST, and Alk Phos, which were noticeably lower.

Within a

few days those labs would be perfectly normal again.

Once I was lucky enough to have this happen...

I went in for labs on a Monday just to check on things. Monday night I had an

attack.

Tuesday I went back in for labs. Monday's labs were perfectly normal.

Tuesday's

were off the charts. So this didn't seem to be cyclical. It spiked

spontaneously,

though there sometimes is that pattern to the period thing.

I can't see how this is from bacteria. That whole idea is just foreign to me.

Does this

still sound similar?

What I should really do is just chill out a bit until a diagnosis. But it's

kind of driving

me crazy right now.

Thanks so much for your information, and thanks so much for your support. It's

a

great help.

>

> ,

> In the beginning, my cholangitis attacks were associated with my

> diseased gallbladder as well as PSC. Once I had the gallbladder out,

> things got better for a while. They were bacterial in nature, and

> once I was diagnosed, when I had them I automatically went on

> antibiotics to take care of them. I found that with the antibiotics,

> they didn't last nearly as long or knock me down as hard - at first.

> As things progressed, I was on antibiotics all the time. It wasn't

> fun, but it was what I needed to do to get by until I got a new

> liver. Cholangitis attacks that aren't treated can lead to sepsis

> and death, so it is imperative that you seek treatment for them when

> they occur. I know that's hard when you haven't even been diagnosed,

> but you should press for the antibiotics regardless.

>

> I did learn to avoid high-fat foods - unless I couldn't stand it

> anymore. Often, I just would have some pain and no fever or a full-

> blown attack. I learned to read my body very carefully. I could tell

> when things weren't going well and how long to wait to see the doc,

> etc. It is just a learning curve. Other than the antibiotics, I took

> ursodiol to thin my bile. There are several studies ongoing to

> determine if using ursodiol (also known as actigall) can prolong

> time to transplant. I didn't stay on it the entire time I was sick

> because I was one of the few people for whom this drug makes the

> more itchy. (Itching is associated with PSC by itself, but I itch

> whenever I'm urso - even now, post-transplant - if I take the full

> three pills a day that I'm supposed to.) I want my new bile ducts to

> stay open (not recurrent PSC - problems from surgery - long story),

> so I continue to take it despite some mild-moderate itching.

>

> I understand about not wanting this diagnosis, but wanting one all

> the same. Diagnosis is an incredibly tough time. You have to allow

> yourself to feel some emotions that are pretty scary. You have to

> brace yourself for the uncertainty that lies ahead. As we're always

> fond of saying around here, though, live your life to its fullest

> and enjoy every minute - PSC might not be the thing that gets you in

> the long or short run. The one major bonus to having PSC is that we

> get to appreciate every blessed day we have to spend with friends

> and family in a way that people who breeze through life seldom can

> fathom.

>

> I hope that this helps in some small way. I still am more apt to get

> sick the week before my period - in any way that one can get sick -

> so I find it interesting that you're experiencing the same thing.

> I've had doctors scoff at this, and others have believed me, noting

> the effect that estrogen and progesterone have on the liver. Thanks

> for sharing your story, and keep asking your questions! A good place

> to look is at the FAQ page on www.psc-literature.org.

>

> Take care,

> Deb in VA

> PSC 1998, UC 1999, Listed ltx 2001, LDLTX 5/19/2005, Partial Portal

> Vein Thrombosis 7/20/2005, 14 PTCs with drain placements/

> replacements from 9/2005 - 3/2006, 3 sinus surgeries since 1/2006,

> havin' a good day today.

>

[Guest guest]

Thanks again, Deb.

Can I share some more detail about my attacks? I'm curious about what you said

about the meds making your attacks not knock you out for as long. Mine only

last for

8-12 hours. The pain will only last for about an hour or so because the

antacids will

eventually help (I think). The fever and chills happen after. Within 12 hours

if you

looked at me you'd have no idea what I had just been through, except that I'd be

so

tired because it had kept me up the night before. When I was admitted into the

ICU

because of the low BP, they released me within 12 hours because everything was

back

to normal, except my ALT, AST, and Alk Phos, which were noticeably lower.

Within a

few days those labs would be perfectly normal again.

Once I was lucky enough to have this happen...

I went in for labs on a Monday just to check on things. Monday night I had an

attack.

Tuesday I went back in for labs. Monday's labs were perfectly normal.

Tuesday's

were off the charts. So this didn't seem to be cyclical. It spiked

spontaneously,

though there sometimes is that pattern to the period thing.

I can't see how this is from bacteria. That whole idea is just foreign to me.

Does this

still sound similar?

What I should really do is just chill out a bit until a diagnosis. But it's

kind of driving

me crazy right now.

Thanks so much for your information, and thanks so much for your support. It's

a

great help.

>

> ,

> In the beginning, my cholangitis attacks were associated with my

> diseased gallbladder as well as PSC. Once I had the gallbladder out,

> things got better for a while. They were bacterial in nature, and

> once I was diagnosed, when I had them I automatically went on

> antibiotics to take care of them. I found that with the antibiotics,

> they didn't last nearly as long or knock me down as hard - at first.

> As things progressed, I was on antibiotics all the time. It wasn't

> fun, but it was what I needed to do to get by until I got a new

> liver. Cholangitis attacks that aren't treated can lead to sepsis

> and death, so it is imperative that you seek treatment for them when

> they occur. I know that's hard when you haven't even been diagnosed,

> but you should press for the antibiotics regardless.

>

> I did learn to avoid high-fat foods - unless I couldn't stand it

> anymore. Often, I just would have some pain and no fever or a full-

> blown attack. I learned to read my body very carefully. I could tell

> when things weren't going well and how long to wait to see the doc,

> etc. It is just a learning curve. Other than the antibiotics, I took

> ursodiol to thin my bile. There are several studies ongoing to

> determine if using ursodiol (also known as actigall) can prolong

> time to transplant. I didn't stay on it the entire time I was sick

> because I was one of the few people for whom this drug makes the

> more itchy. (Itching is associated with PSC by itself, but I itch

> whenever I'm urso - even now, post-transplant - if I take the full

> three pills a day that I'm supposed to.) I want my new bile ducts to

> stay open (not recurrent PSC - problems from surgery - long story),

> so I continue to take it despite some mild-moderate itching.

>

> I understand about not wanting this diagnosis, but wanting one all

> the same. Diagnosis is an incredibly tough time. You have to allow

> yourself to feel some emotions that are pretty scary. You have to

> brace yourself for the uncertainty that lies ahead. As we're always

> fond of saying around here, though, live your life to its fullest

> and enjoy every minute - PSC might not be the thing that gets you in

> the long or short run. The one major bonus to having PSC is that we

> get to appreciate every blessed day we have to spend with friends

> and family in a way that people who breeze through life seldom can

> fathom.

>

> I hope that this helps in some small way. I still am more apt to get

> sick the week before my period - in any way that one can get sick -

> so I find it interesting that you're experiencing the same thing.

> I've had doctors scoff at this, and others have believed me, noting

> the effect that estrogen and progesterone have on the liver. Thanks

> for sharing your story, and keep asking your questions! A good place

> to look is at the FAQ page on www.psc-literature.org.

>

> Take care,

> Deb in VA

> PSC 1998, UC 1999, Listed ltx 2001, LDLTX 5/19/2005, Partial Portal

> Vein Thrombosis 7/20/2005, 14 PTCs with drain placements/

> replacements from 9/2005 - 3/2006, 3 sinus surgeries since 1/2006,

> havin' a good day today.

>

[Guest guest]

Thanks again, Deb.

Can I share some more detail about my attacks? I'm curious about what you said

about the meds making your attacks not knock you out for as long. Mine only

last for

8-12 hours. The pain will only last for about an hour or so because the

antacids will

eventually help (I think). The fever and chills happen after. Within 12 hours

if you

looked at me you'd have no idea what I had just been through, except that I'd be

so

tired because it had kept me up the night before. When I was admitted into the

ICU

because of the low BP, they released me within 12 hours because everything was

back

to normal, except my ALT, AST, and Alk Phos, which were noticeably lower.

Within a

few days those labs would be perfectly normal again.

Once I was lucky enough to have this happen...

I went in for labs on a Monday just to check on things. Monday night I had an

attack.

Tuesday I went back in for labs. Monday's labs were perfectly normal.

Tuesday's

were off the charts. So this didn't seem to be cyclical. It spiked

spontaneously,

though there sometimes is that pattern to the period thing.

I can't see how this is from bacteria. That whole idea is just foreign to me.

Does this

still sound similar?

What I should really do is just chill out a bit until a diagnosis. But it's

kind of driving

me crazy right now.

Thanks so much for your information, and thanks so much for your support. It's

a

great help.

>

> ,

> In the beginning, my cholangitis attacks were associated with my

> diseased gallbladder as well as PSC. Once I had the gallbladder out,

> things got better for a while. They were bacterial in nature, and

> once I was diagnosed, when I had them I automatically went on

> antibiotics to take care of them. I found that with the antibiotics,

> they didn't last nearly as long or knock me down as hard - at first.

> As things progressed, I was on antibiotics all the time. It wasn't

> fun, but it was what I needed to do to get by until I got a new

> liver. Cholangitis attacks that aren't treated can lead to sepsis

> and death, so it is imperative that you seek treatment for them when

> they occur. I know that's hard when you haven't even been diagnosed,

> but you should press for the antibiotics regardless.

>

> I did learn to avoid high-fat foods - unless I couldn't stand it

> anymore. Often, I just would have some pain and no fever or a full-

> blown attack. I learned to read my body very carefully. I could tell

> when things weren't going well and how long to wait to see the doc,

> etc. It is just a learning curve. Other than the antibiotics, I took

> ursodiol to thin my bile. There are several studies ongoing to

> determine if using ursodiol (also known as actigall) can prolong

> time to transplant. I didn't stay on it the entire time I was sick

> because I was one of the few people for whom this drug makes the

> more itchy. (Itching is associated with PSC by itself, but I itch

> whenever I'm urso - even now, post-transplant - if I take the full

> three pills a day that I'm supposed to.) I want my new bile ducts to

> stay open (not recurrent PSC - problems from surgery - long story),

> so I continue to take it despite some mild-moderate itching.

>

> I understand about not wanting this diagnosis, but wanting one all

> the same. Diagnosis is an incredibly tough time. You have to allow

> yourself to feel some emotions that are pretty scary. You have to

> brace yourself for the uncertainty that lies ahead. As we're always

> fond of saying around here, though, live your life to its fullest

> and enjoy every minute - PSC might not be the thing that gets you in

> the long or short run. The one major bonus to having PSC is that we

> get to appreciate every blessed day we have to spend with friends

> and family in a way that people who breeze through life seldom can

> fathom.

>

> I hope that this helps in some small way. I still am more apt to get

> sick the week before my period - in any way that one can get sick -

> so I find it interesting that you're experiencing the same thing.

> I've had doctors scoff at this, and others have believed me, noting

> the effect that estrogen and progesterone have on the liver. Thanks

> for sharing your story, and keep asking your questions! A good place

> to look is at the FAQ page on www.psc-literature.org.

>

> Take care,

> Deb in VA

> PSC 1998, UC 1999, Listed ltx 2001, LDLTX 5/19/2005, Partial Portal

> Vein Thrombosis 7/20/2005, 14 PTCs with drain placements/

> replacements from 9/2005 - 3/2006, 3 sinus surgeries since 1/2006,

> havin' a good day today.

>

[Guest guest]

> I went in for labs on a Monday just to check on things. Monday

night I had an attack.

> Tuesday I went back in for labs. Monday's labs were perfectly

normal. Tuesday's

> were off the charts. So this didn't seem to be cyclical. It

spiked spontaneously,

> though there sometimes is that pattern to the period thing.

>

> I can't see how this is from bacteria. That whole idea is just

foreign to me. Does this

> still sound similar?

>

>

,

So cholangitis in PSC patients is generally caused from the bile

inside the bile ducts not flowing well due to strictures/narrowing of

the ducts. When the bile is stationary it is much more prone to

bacterial infection from bacteria in the small intestine. When bile

is flowing and draining properly into the small instestine it

prevents the intestinal bacteria from invading into the ducts.

Once infection by the invading bacteria starts it causes further

inflammation closing off the ducts even more. The infection along

with lack of bile flow cause the symptoms of cholangitis. These

include fever, chills, jaundice, upper right quadrant pain, dark

urine, clay colored stools, etc. This symptoms can often be further

confirmed with elevated liver and blood tests. You might see

elevation in White Blood Cell Count (indicating you body is fighting

an infection) as well as increased bilirubin and other liver labs.

First line treatment often is with oral or IV antibiotics and many

will see their symptoms quickly resolve after starting the

antibiotics. Beyond that, especially with recurrent attacks an ERCP

may be performed and a stent placement or balloon dilation of the

ducts may be attempted.

The rapid recover of symptoms and labs is not at all unusual. I have

been through this many times. When taking antibiotics within a

couple of days I am feeling better. Cholangitis can come on

rapidly. I have gone from normal to a temperature of 105 degrees in

a matter of several hours. As Deb said, if this is what you have,

whenever you have a fever, quick treatment is required. Without

treatment infection can spread to the blood causing sepsis and become

very serious very rapidly.

I hope this answers some of your questions.

in Seattle

UC 1991, PSC 2001

[Guest guest]

> I went in for labs on a Monday just to check on things. Monday

night I had an attack.

> Tuesday I went back in for labs. Monday's labs were perfectly

normal. Tuesday's

> were off the charts. So this didn't seem to be cyclical. It

spiked spontaneously,

> though there sometimes is that pattern to the period thing.

>

> I can't see how this is from bacteria. That whole idea is just

foreign to me. Does this

> still sound similar?

>

>

,

So cholangitis in PSC patients is generally caused from the bile

inside the bile ducts not flowing well due to strictures/narrowing of

the ducts. When the bile is stationary it is much more prone to

bacterial infection from bacteria in the small intestine. When bile

is flowing and draining properly into the small instestine it

prevents the intestinal bacteria from invading into the ducts.

Once infection by the invading bacteria starts it causes further

inflammation closing off the ducts even more. The infection along

with lack of bile flow cause the symptoms of cholangitis. These

include fever, chills, jaundice, upper right quadrant pain, dark

urine, clay colored stools, etc. This symptoms can often be further

confirmed with elevated liver and blood tests. You might see

elevation in White Blood Cell Count (indicating you body is fighting

an infection) as well as increased bilirubin and other liver labs.

First line treatment often is with oral or IV antibiotics and many

will see their symptoms quickly resolve after starting the

antibiotics. Beyond that, especially with recurrent attacks an ERCP

may be performed and a stent placement or balloon dilation of the

ducts may be attempted.

The rapid recover of symptoms and labs is not at all unusual. I have

been through this many times. When taking antibiotics within a

couple of days I am feeling better. Cholangitis can come on

rapidly. I have gone from normal to a temperature of 105 degrees in

a matter of several hours. As Deb said, if this is what you have,

whenever you have a fever, quick treatment is required. Without

treatment infection can spread to the blood causing sepsis and become

very serious very rapidly.

I hope this answers some of your questions.

in Seattle

UC 1991, PSC 2001

[Guest guest]

> I went in for labs on a Monday just to check on things. Monday

night I had an attack.

> Tuesday I went back in for labs. Monday's labs were perfectly

normal. Tuesday's

> were off the charts. So this didn't seem to be cyclical. It

spiked spontaneously,

> though there sometimes is that pattern to the period thing.

>

> I can't see how this is from bacteria. That whole idea is just

foreign to me. Does this

> still sound similar?

>

>

,

So cholangitis in PSC patients is generally caused from the bile

inside the bile ducts not flowing well due to strictures/narrowing of

the ducts. When the bile is stationary it is much more prone to

bacterial infection from bacteria in the small intestine. When bile

is flowing and draining properly into the small instestine it

prevents the intestinal bacteria from invading into the ducts.

Once infection by the invading bacteria starts it causes further

inflammation closing off the ducts even more. The infection along

with lack of bile flow cause the symptoms of cholangitis. These

include fever, chills, jaundice, upper right quadrant pain, dark

urine, clay colored stools, etc. This symptoms can often be further

confirmed with elevated liver and blood tests. You might see

elevation in White Blood Cell Count (indicating you body is fighting

an infection) as well as increased bilirubin and other liver labs.

First line treatment often is with oral or IV antibiotics and many

will see their symptoms quickly resolve after starting the

antibiotics. Beyond that, especially with recurrent attacks an ERCP

may be performed and a stent placement or balloon dilation of the

ducts may be attempted.

The rapid recover of symptoms and labs is not at all unusual. I have

been through this many times. When taking antibiotics within a

couple of days I am feeling better. Cholangitis can come on

rapidly. I have gone from normal to a temperature of 105 degrees in

a matter of several hours. As Deb said, if this is what you have,

whenever you have a fever, quick treatment is required. Without

treatment infection can spread to the blood causing sepsis and become

very serious very rapidly.

I hope this answers some of your questions.

in Seattle

UC 1991, PSC 2001

[Guest guest]

Thanks for the further clarification, . I guess what confuses me is the

fact that I

have NEVER had any antibiotics to fight these attacks, and my body has always

resolved the issue within 12 hours on its own. That's why I questioned whether

it

could be non-bacterial. I'm wondering how the antibiotics would help. I need

to go

back to my labs and see about the blood cell counts. I don't think they've ever

been

off during an attack. And I know my biliubin is almost always 0. My last labs

during

an attack, which was a mild one, showed my bilirubin at 0.5.

Obviously, I need to be doing some more actual research. Your description of

what

causes the infection and the cholagitis was very helpful. Thanks a lot. It

sure sounds

like what I have, though I've never noticed any jaundice. I have a feeling this

isn't

going to be a straightforward diagnosis. My doc said even my pathology report

looked interesting, and he was kind of excited to be able to " get his hands

dirty with

such a challenging case. " Sometimes I hate being so damn unique!

> >

>

>

> ,

>

> So cholangitis in PSC patients is generally caused from the bile

> inside the bile ducts not flowing well due to strictures/narrowing of

> the ducts. When the bile is stationary it is much more prone to

> bacterial infection from bacteria in the small intestine. When bile

> is flowing and draining properly into the small instestine it

> prevents the intestinal bacteria from invading into the ducts.

>

> Once infection by the invading bacteria starts it causes further

> inflammation closing off the ducts even more. The infection along

> with lack of bile flow cause the symptoms of cholangitis. These

> include fever, chills, jaundice, upper right quadrant pain, dark

> urine, clay colored stools, etc. This symptoms can often be further

> confirmed with elevated liver and blood tests. You might see

> elevation in White Blood Cell Count (indicating you body is fighting

> an infection) as well as increased bilirubin and other liver labs.

>

> First line treatment often is with oral or IV antibiotics and many

> will see their symptoms quickly resolve after starting the

> antibiotics. Beyond that, especially with recurrent attacks an ERCP

> may be performed and a stent placement or balloon dilation of the

> ducts may be attempted.

>

> The rapid recover of symptoms and labs is not at all unusual. I have

> been through this many times. When taking antibiotics within a

> couple of days I am feeling better. Cholangitis can come on

> rapidly. I have gone from normal to a temperature of 105 degrees in

> a matter of several hours. As Deb said, if this is what you have,

> whenever you have a fever, quick treatment is required. Without

> treatment infection can spread to the blood causing sepsis and become

> very serious very rapidly.

>

> I hope this answers some of your questions.

>

> in Seattle

> UC 1991, PSC 2001

>

[Guest guest]

Thanks for the further clarification, . I guess what confuses me is the

fact that I

have NEVER had any antibiotics to fight these attacks, and my body has always

resolved the issue within 12 hours on its own. That's why I questioned whether

it

could be non-bacterial. I'm wondering how the antibiotics would help. I need

to go

back to my labs and see about the blood cell counts. I don't think they've ever

been

off during an attack. And I know my biliubin is almost always 0. My last labs

during

an attack, which was a mild one, showed my bilirubin at 0.5.

Obviously, I need to be doing some more actual research. Your description of

what

causes the infection and the cholagitis was very helpful. Thanks a lot. It

sure sounds

like what I have, though I've never noticed any jaundice. I have a feeling this

isn't

going to be a straightforward diagnosis. My doc said even my pathology report

looked interesting, and he was kind of excited to be able to " get his hands

dirty with

such a challenging case. " Sometimes I hate being so damn unique!

> >

>

>

> ,

>

> So cholangitis in PSC patients is generally caused from the bile

> inside the bile ducts not flowing well due to strictures/narrowing of

> the ducts. When the bile is stationary it is much more prone to

> bacterial infection from bacteria in the small intestine. When bile

> is flowing and draining properly into the small instestine it

> prevents the intestinal bacteria from invading into the ducts.

>

> Once infection by the invading bacteria starts it causes further

> inflammation closing off the ducts even more. The infection along

> with lack of bile flow cause the symptoms of cholangitis. These

> include fever, chills, jaundice, upper right quadrant pain, dark

> urine, clay colored stools, etc. This symptoms can often be further

> confirmed with elevated liver and blood tests. You might see

> elevation in White Blood Cell Count (indicating you body is fighting

> an infection) as well as increased bilirubin and other liver labs.

>

> First line treatment often is with oral or IV antibiotics and many

> will see their symptoms quickly resolve after starting the

> antibiotics. Beyond that, especially with recurrent attacks an ERCP

> may be performed and a stent placement or balloon dilation of the

> ducts may be attempted.

>

> The rapid recover of symptoms and labs is not at all unusual. I have

> been through this many times. When taking antibiotics within a

> couple of days I am feeling better. Cholangitis can come on

> rapidly. I have gone from normal to a temperature of 105 degrees in

> a matter of several hours. As Deb said, if this is what you have,

> whenever you have a fever, quick treatment is required. Without

> treatment infection can spread to the blood causing sepsis and become

> very serious very rapidly.

>

> I hope this answers some of your questions.

>

> in Seattle

> UC 1991, PSC 2001

>

[Guest guest]

Thanks for the further clarification, . I guess what confuses me is the

fact that I

have NEVER had any antibiotics to fight these attacks, and my body has always

resolved the issue within 12 hours on its own. That's why I questioned whether

it

could be non-bacterial. I'm wondering how the antibiotics would help. I need

to go

back to my labs and see about the blood cell counts. I don't think they've ever

been

off during an attack. And I know my biliubin is almost always 0. My last labs

during

an attack, which was a mild one, showed my bilirubin at 0.5.

Obviously, I need to be doing some more actual research. Your description of

what

causes the infection and the cholagitis was very helpful. Thanks a lot. It

sure sounds

like what I have, though I've never noticed any jaundice. I have a feeling this

isn't

going to be a straightforward diagnosis. My doc said even my pathology report

looked interesting, and he was kind of excited to be able to " get his hands

dirty with

such a challenging case. " Sometimes I hate being so damn unique!

> >

>

>

> ,

>

> So cholangitis in PSC patients is generally caused from the bile

> inside the bile ducts not flowing well due to strictures/narrowing of

> the ducts. When the bile is stationary it is much more prone to

> bacterial infection from bacteria in the small intestine. When bile

> is flowing and draining properly into the small instestine it

> prevents the intestinal bacteria from invading into the ducts.

>

> Once infection by the invading bacteria starts it causes further

> inflammation closing off the ducts even more. The infection along

> with lack of bile flow cause the symptoms of cholangitis. These

> include fever, chills, jaundice, upper right quadrant pain, dark

> urine, clay colored stools, etc. This symptoms can often be further

> confirmed with elevated liver and blood tests. You might see

> elevation in White Blood Cell Count (indicating you body is fighting

> an infection) as well as increased bilirubin and other liver labs.

>

> First line treatment often is with oral or IV antibiotics and many

> will see their symptoms quickly resolve after starting the

> antibiotics. Beyond that, especially with recurrent attacks an ERCP

> may be performed and a stent placement or balloon dilation of the

> ducts may be attempted.

>

> The rapid recover of symptoms and labs is not at all unusual. I have

> been through this many times. When taking antibiotics within a

> couple of days I am feeling better. Cholangitis can come on

> rapidly. I have gone from normal to a temperature of 105 degrees in

> a matter of several hours. As Deb said, if this is what you have,

> whenever you have a fever, quick treatment is required. Without

> treatment infection can spread to the blood causing sepsis and become

> very serious very rapidly.

>

> I hope this answers some of your questions.

>

> in Seattle

> UC 1991, PSC 2001

>

[Guest guest]

> I guess what confuses me is the fact that I

> have NEVER had any antibiotics to fight these attacks, and my body

has always

> resolved the issue within 12 hours on its own.

,

My initial experience with cholangitis attacks was similar to yours,

although without the abdominal pain. I would feel chills, and have a

fever which would last 12 - 18 hours, but I would feel lousy for one

or two days. Then I would feel fine for a while. At first it was

nearly a month between these fevers, but they began to become more

frequent (a week apart) so I saw my PCP about them. Since I had been

diagnosed with PSC a few years before, it was an easy step to connect

the fevers to cholangitis, and get a prescription for antibiotics,

which stopped them in their tracks.

Our immune systems can handle most invaders without help. On accasion

though, help in the form of antibiotics, etc. is needed. When an

infection/fever keeps coming back that is an indication that the

immune system need a bit of help.

Best regards,

Tim R

[Guest guest]

> I guess what confuses me is the fact that I

> have NEVER had any antibiotics to fight these attacks, and my body

has always

> resolved the issue within 12 hours on its own.

,

My initial experience with cholangitis attacks was similar to yours,

although without the abdominal pain. I would feel chills, and have a

fever which would last 12 - 18 hours, but I would feel lousy for one

or two days. Then I would feel fine for a while. At first it was

nearly a month between these fevers, but they began to become more

frequent (a week apart) so I saw my PCP about them. Since I had been

diagnosed with PSC a few years before, it was an easy step to connect

the fevers to cholangitis, and get a prescription for antibiotics,

which stopped them in their tracks.

Our immune systems can handle most invaders without help. On accasion

though, help in the form of antibiotics, etc. is needed. When an

infection/fever keeps coming back that is an indication that the

immune system need a bit of help.

Best regards,

Tim R

[Guest guest]

> I guess what confuses me is the fact that I

> have NEVER had any antibiotics to fight these attacks, and my body

has always

> resolved the issue within 12 hours on its own.

,

My initial experience with cholangitis attacks was similar to yours,

although without the abdominal pain. I would feel chills, and have a

fever which would last 12 - 18 hours, but I would feel lousy for one

or two days. Then I would feel fine for a while. At first it was

nearly a month between these fevers, but they began to become more

frequent (a week apart) so I saw my PCP about them. Since I had been

diagnosed with PSC a few years before, it was an easy step to connect

the fevers to cholangitis, and get a prescription for antibiotics,

which stopped them in their tracks.

Our immune systems can handle most invaders without help. On accasion

though, help in the form of antibiotics, etc. is needed. When an

infection/fever keeps coming back that is an indication that the

immune system need a bit of help.

Best regards,

Tim R

[Guest guest]

,

> My initial experience with cholangitis attacks was similar to yours,

....

Tim -

What confounds and confuses me is that my son, and it seems some

others too, have similar abdominal pain, but different. For years,

has had what we thought was " extreme " GERD, reflux. Sometimes

his abdominal pain is substernal chest pain, sometimes vomiting,

sometimes pain across his entire rib cage. In the past six months it

is much worse and more frequent. In past Ranitidine helped (unless he

ate really fatty food - then he would just vomit). Now he requires

daily Prilosec and still has intermittent symptoms. At times is on

twice daily Prilosec. His GI thinks it is esophageal spasm.

Maybe it is that now I know he has PSC, so I am convinced that PSC has

something to do with it! His symptoms now are often worse at night.

Sometimes he is just nauseous for a day, or two, or three - yuck!

I wish we could do some complex statistical analysis of everyone's

upper GI symtpoms (I know the colitis adds complexity) to see if any

patterns emerge or to at least see the range of symtpoms. Be

interesting to see what works for different people too.

Joanne

(, Ca; mom of , 15, UC/PSC 2-06; " GERD " 2002; JRA 1999)

[Guest guest]

,

> My initial experience with cholangitis attacks was similar to yours,

....

Tim -

What confounds and confuses me is that my son, and it seems some

others too, have similar abdominal pain, but different. For years,

has had what we thought was " extreme " GERD, reflux. Sometimes

his abdominal pain is substernal chest pain, sometimes vomiting,

sometimes pain across his entire rib cage. In the past six months it

is much worse and more frequent. In past Ranitidine helped (unless he

ate really fatty food - then he would just vomit). Now he requires

daily Prilosec and still has intermittent symptoms. At times is on

twice daily Prilosec. His GI thinks it is esophageal spasm.

Maybe it is that now I know he has PSC, so I am convinced that PSC has

something to do with it! His symptoms now are often worse at night.

Sometimes he is just nauseous for a day, or two, or three - yuck!

I wish we could do some complex statistical analysis of everyone's

upper GI symtpoms (I know the colitis adds complexity) to see if any

patterns emerge or to at least see the range of symtpoms. Be

interesting to see what works for different people too.

Joanne

(, Ca; mom of , 15, UC/PSC 2-06; " GERD " 2002; JRA 1999)

[Guest guest]

,

> My initial experience with cholangitis attacks was similar to yours,

....

Tim -

What confounds and confuses me is that my son, and it seems some

others too, have similar abdominal pain, but different. For years,

has had what we thought was " extreme " GERD, reflux. Sometimes

his abdominal pain is substernal chest pain, sometimes vomiting,

sometimes pain across his entire rib cage. In the past six months it

is much worse and more frequent. In past Ranitidine helped (unless he

ate really fatty food - then he would just vomit). Now he requires

daily Prilosec and still has intermittent symptoms. At times is on

twice daily Prilosec. His GI thinks it is esophageal spasm.

Maybe it is that now I know he has PSC, so I am convinced that PSC has

something to do with it! His symptoms now are often worse at night.

Sometimes he is just nauseous for a day, or two, or three - yuck!

I wish we could do some complex statistical analysis of everyone's

upper GI symtpoms (I know the colitis adds complexity) to see if any

patterns emerge or to at least see the range of symtpoms. Be

interesting to see what works for different people too.

Joanne

(, Ca; mom of , 15, UC/PSC 2-06; " GERD " 2002; JRA 1999)

[Guest guest]

,

What you are describing is classic cholangitis. Sorry to say that,

but that's what it sounds like. The antacids appear to help because

the attack just abates naturally. Try going through one without the

antacids and see if it lasts the same amount of time...Eventually,

your body's immune system is fighting these. That's why you haven't

ended up in sepsis.

What I meant by knocking me out for as long is that I was able to

start the treatment for them sooner, so I didn't suffer so much from

the chills and fever. This meant that I would be tired for less

time. I recall missing a day of work after the attacks in the

beginning - but once I started taking the antibiotics at the start

of an attack, I noticed that the recovery time was shorter.

The enzyme elevation at the time of your attack is normal, too. If

you have an infection caused by a blockage in your duct, liver and

bile duct cells are going to respond. Alk Phos is representative of

how the bile duct cells are functioning. If it is off the charts,

then there is a problem with your bile ducts (usually). Your AST and

ALT are more specific to the liver itself. If the blockage backs up

into your liver or if your liver also gets infected with the

bacteria, you'll see an elevation in these enzymes. I'm not

explaining this very well, but the gist is - when you're actively

fighting an infection, the enzymes will spike and then will drop

once you're body has dealt with the infection. You may or may not

experience a rise in bilirubin, too.

My theory on the period thing is that the change in hormones makes

the bile ducts a cushier place for the bacteria to live by changing

PH or something else in the ducts. So, it is still a regular attack,

but I found that this " better environment " for the bacteria made the

attack more likely the week before my period. That's my own theory -

not a doctor or anything - just lived with the disease for 10+ years.

I hope this helps. I know that the not knowing has got to be driving

you crazy!

HTH -

Deb in VA

> > PSC 1998, UC 1999, Listed ltx 2001, LDLTX 5/19/2005, Partial

Portal

> > Vein Thrombosis 7/20/2005, 14 PTCs with drain placements/

> > replacements from 9/2005 - 3/2006, 3 sinus surgeries since

1/2006,

> > havin' a good day today.

> >

>