RE: New to the group and to PSC

[Guest guest]

Hi Ruth

Welcome to our group.

It is sad that you have been diagnosed with PSC, but there is a silver

lining which is this group. All the members are amazing with the

information and fellowship to help us get on with our lives while

living with this disease.

I have found the search facility near the top of the page to be really

helpfully if you wish to check if a topic has been previously discussed.

I am from New Zealand at the bottom of the world, so we are truly an

international group.

Best wishes

> My name is Ruth. I'm 34, a mother of two, and a university professor.

> I live in the States, though I'm originally from Israel.

[Guest guest]

Hi Ruth,I'm sorry about your diagnosis. The first few months after the diagnosis are the toughest as you learn about this disease and come to terms with it. You can live a pretty normal life for quite some time with PSC, especially if you are symptom free. As you read the posts here you'll learn what some of the more common symptoms are and what to really look for -- changes that are significant as compared to changes that are strange but not necessarily significant. I suffer from fatigue, nausea & itching, and sometimes right upper quadrant (RUQ) pain (pain in the liver). When you start suffering from jaundice and hepatoencephalopathy (aka brain fog), then you really have something to worry about.Here are some places for great information:psc-literature.orgPSC Partners Seeking a Cure (not sure of the exact web site, so just do a google search)As to the ERCP test - it is considered the gold standard in diagnosis in that you get "beading" along the bile ducts that is clearly indicative of PSC. I haven't heard of a false positive. Sometimes there's a false negative if the PSC starts in the small bile ducts, and the ERCP contrast doesn't show up in the small bile ducts.If you check your surgical report from the colectomy you had done, that may also show that something didn't look right with your liver. However, if it's your main bile ducts that are affected, then maybe your liver doesn't/didn't look cirrhotic.Anyway, the Mayo Clinic is considered one of the best places to go for a PSCdiagnosis (if not THE best place) and treatment, so you're in excellent hands there. And you'll get lots of great support here.As to your question regarding having more children, that is for you to answer after some research and soul searching. PSC does have a genetic component, so that is something to consider. In fact the cutting-edge research on PSC is genetic research. The genetic markers for PSC have recently been located.-Marie, 56UC, J-pouch, PSC, Autoimmune HepatitisMarie

To: From: rblatt@...Date: Tue, 10 Jun 2008 18:27:08 +0000Subject: New to the group and to PSC

Hi everyone,

My name is Ruth. I'm 34, a mother of two, and a university professor.

I live in the States, though I'm originally from Israel. I was

diagnosed with IBD in 2000, when I was still in Israel. Had it really

bad since then. They kept switching diagnosis from Crohn's to UC and

back. About 6 months ago I had my colon removed at Mayo Clinic

(Rochester) because of high-grade dysplasia. I had an ileorectostomy,

so no pouch or stoma. It was very successful and I felt great for the

first time in a long time!!! I had energy and could leave the house

without fear. A couple of weeks ago I went back to Mayo for follow up

and saw a new GI doctor, who suspected PSC. I had an ERCP and they

confirmed the diagnosis, though I have no symptoms now. Back in 2000,

when my IBD first showed up, I had abnormal liver values and some

jaundice, but it went away once I got on Imuran and Prednisone, so

they never followed up. Now they don't know if back then it was

already PSC or not.

The doctor I met with at Mayo didn't have a lot to tell me, just that

it's good that I don't have symptoms yet and that liver transplant

success rates are high for people with PSC. But I'm ful of questions:

What should I expect? How will I feel as my disease progresses? What

kind of life will I be able to lead? I was planning on having 1-2

more children. Will I be able to take care of them? Will I be there

to raise them? I'm at a loss, I don't know what the future holds for

me.

A final question - are there false positives with ERCPs, or is the

diagnosis certain?

I'd love to hear your experiences and thoughts on what to expect.

Thanks,

Ruth

Enjoy 5 GB of free, password-protected online storage. Get Windows Live SkyDrive.

[Guest guest]

Hi Ruth,

I am sorry to learn of your PSC diagnose,

but I am happy you found us. This group is amazing. I have learned so much

about PSC and its symptoms in the last two years.

The problem with PSC is that it is a very

individual disease. There is no way to know how long it will take from diagnose

to transplant, there even are doctors who suspect that many of us will die WITH

PSC instead of FROM PSC. How you will feel is also very individual. I have been

diagnosed 5 years ago, also without symptoms like you. I had a cholangitis attack

almost three years ago after which I had a stent (tube) placed in my common

bile duct and my gall bladder removed. After that the stent was removed and I

have been asymptomatic ever since. Others have problems ranging from itching,

jaundice, pain in the liver area, fatigue to full-fledged liver failure and liver

transplant and even recurring PSC after transplant. There are people on this

forum that have continued their normal lives for two decades without any

complications, mostly people that were diagnosed asymptomatic.

For more info on PSC please check out the

link below. It is a brochure in Hebrew (a translation of the PSC-partners English

brochure)

http://www.pscpartners.org/PSCBrochureHebrew.pdf

I was diagnosed after having children, and

I can't say what I would have done if I was diagnosed before. There definitely are

more things to consider now. The only thing I can say is that pregnancy should

not be harmful for you, and your PSC should not affect the health of your

children if monitored closely. Mild cases of PSC like yours seem to

" disappear " during pregnancy (normal LFTs), only to return after

giving birth. PSC and other auto-immune diseases seem to run in the family

though, and there is a (small) chance to pass it to your children.

As far as I know ERCP is pretty definite. Even

a layman can see the damage PSC does in a biliary tree after a short

explanation.

If you have any questions, please do not

hesitate to contact me or my wife Ellen.

cboer@...

ellen.wallace@...

Chaim Boermeester, Israel

From:

[mailto: ] On Behalf Of ruth.blatt

Sent: Tuesday, June 10, 2008 20:27

To:

Subject: New to the

group and to PSC

Hi everyone,

My name is Ruth. I'm 34, a

mother of two, and a university professor.

I live in the States, though I'm originally from Israel. I was

diagnosed with IBD in 2000, when I was still in Israel. Had it really

bad since then. They kept switching diagnosis from Crohn's to UC and

back. About 6 months ago I had my colon removed at Mayo Clinic

(Rochester)

because of high-grade dysplasia. I had an ileorectostomy,

so no pouch or stoma. It was very successful and I felt great for the

first time in a long time!!! I had energy and could leave the house

without fear. A couple of weeks ago I went back to Mayo for follow up

and saw a new GI doctor, who suspected PSC. I had an ERCP and they

confirmed the diagnosis, though I have no symptoms now. Back in 2000,

when my IBD first showed up, I had abnormal liver values and some

jaundice, but it went away once I got on Imuran and Prednisone, so

they never followed up. Now they don't know if back then it was

already PSC or not.

The doctor I met with at Mayo didn't have a lot to tell me, just that

it's good that I don't have symptoms yet and that liver transplant

success rates are high for people with PSC. But I'm ful of questions:

What should I expect? How will I feel as my disease progresses? What

kind of life will I be able to lead? I was planning on having 1-2

more children. Will I be able to take care of them? Will I be there

to raise them? I'm at a loss, I don't know what the future holds for

me.

A final question - are there false positives with ERCPs, or is the

diagnosis certain?

I'd love to hear your experiences and thoughts on what to expect.

Thanks,

Ruth

[Guest guest]

Hi Ruth,

My name is Liron and I'm from Israel.

I was also recently diagnosed with PSC, but I do know that I've had it for a

while, because I've been having elevated LFTs for the past 5 years.

I'm also a mother to a wonderful baby, who'll turn one in a few days so he's

actually not a baby anymore

I know exactly how you feel, and I've been struggling with the same questions

myself.

I can't tell you much about what to expect, since fortunately I also don't have

any symptoms (other than some RUQ pain which started right after I started

taking Urso). I do know that this disease is very individual, and my hep here in

Israel tells me he has patients that live with this disease as a chronic disease

for a very long time without needing a transplant.

I do hope I won't need one, but I'm being realistic, and I know that I'm young

and it may have to come to that some day. I hope that If and when it comes to

that, there'll already be some medical advancements which will make things

easier.

As for having more children - well, that's my main dilemma right now. The good

news are that pregnancies seem to put PSC into remission. When I was pregnant my

LFTs dropped to the bottom of the scale. So pregnancies seem to slow down the

disease. Many people tell me I should just be pregnant all the time. That would

have been nice except someone has to be healthy enough to raise all these kids

I hope to remain symptom-free for many years, but I can't know how things will

progress, so I do hope to have one more in the next few years, because my

individual feeling tells me I want my kids to be as old as possible and as

independent as possible when I begin experiencing symptoms. But I'm not sure

yet, and we're still thinking about it, and we want to let it all sink in before

we come to any decisions. There's no right/logical thing to do since no one can

predict how this disease will affect you and how well you'll be able to handle

everything. From what I read here, there are people in this group that have PSC

for almost 20 years, and still don't need a transplant, and there are some who

get the more rapid version of this disease. For me that's the hardest part - Not

knowing what to expect and having no control.

What I do try to do is educate myself through this group and through some

articles and talking to specialists, and learning more about what I can do for

my general health. Right now I'm thinking about taking milk thistle (Gdilan

Matzuy in Hebrew), and I'm trying to learn more about the right dose of Urso for

me.

If you wish you can email me anytime at lironli@..., and you can ask

anything.

Liron

Subject: New to the group and to PSC

To:

Date: Tuesday, June 10, 2008, 11:27 AM

Hi everyone,

My name is Ruth. I'm 34, a mother of two, and a university professor.

I live in the States, though I'm originally from Israel.

[Guest guest]

Liron,

You really described my feelings about the baby issue - it's the

uncertainty that's the worst! I don't want to bring babies into this

world that I can't take care of. It's selfish. On the other hand, I'm

having a hard time letting go of my dream of having a big family. One

part of me says, I have no symptoms and even when those begin, I

could possibly still live long enough to raise them. The other part

of me says to focus on acceptance and appreciate what I already have,

which is two wonderful children. Sigh, it's a hard one.

By the way, I called my doctor at Mayo (Lindor) about the false

positive issue with the ERCP. He said the ERCP is very accurate plus

he looked himself at my images and gave me his second opinion, which

is that I definitely have PSC. So much for denial!

But he also said I could live symptom free for decades, and then even

when I get symptoms, they can be mild. So who knows?

We going to give the children question some time - in any case my son

is only 7 months old and I wasn't planning to have another one for

about a year.

Thanks to all of you who answered! I'm so glad I found this group!

Ruth

[Guest guest]

Ruth,

You say it selfish to " bring babies into this world that I can't take care of " ? You might be able to take care of them and like everyone else in the world you might not (none of use know if there is a bus with our name on it). Maybe its not being selfish, but what is it if you deny someone that chance at live (to be born) because you might not be able to take care of them. A lot of great people have come from single parent families, or grown up without there biological parents, and the world has been blessed by their existence.

There are no guarantees that you won't be around to see them grown. I have four sons, two born before my diagnosis and two born after my diagnosis. My youngest son is now 13 and I expect to see him graduate, maybe even have kids of his own. I was diagnosed 19 years ago and my LFT numbers are better today then they were during the first ten years after diagnosis.

Ian (52) PSC 89

Liron, You really described my feelings about the baby issue - it's the uncertainty that's the worst! I don't want to bring babies into this world that I can't take care of. It's selfish. On the other hand, I'm

having a hard time letting go of my dream of having a big family. One part of me says, I have no symptoms and even when those begin, I could possibly still live long enough to raise them. The other part of me says to focus on acceptance and appreciate what I already have,

which is two wonderful children. Sigh, it's a hard one.By the way, I called my doctor at Mayo (Lindor) about the false positive issue with the ERCP. He said the ERCP is very accurate plus he looked himself at my images and gave me his second opinion, which

is that I definitely have PSC. So much for denial!But he also said I could live symptom free for decades, and then even when I get symptoms, they can be mild. So who knows? We going to give the children question some time - in any case my son

is only 7 months old and I wasn't planning to have another one for about a year. Thanks to all of you who answered! I'm so glad I found this group!Ruth -- Ian Cribb former P.Eng. (resigned in good standing)

[Guest guest]

Wow, Ian, that's very inspiring. I always wanted four. You know now in

retrospect that having two more children worked out, but I'm in a

different place. The jury is still out. I'm going to think about it for

a few more months, my little one is only 7 months old. I would love to

have at least another one, but the future is so uncertain. I wish there

was a way to predict whose course would be slow and whose would be

faster.

>

> Ruth,

>

> You say it selfish to " bring babies into this world that I can't

take

> care of " ?