Re: New diagnosis

[Guest guest]

Hi nne,

It seems we are in similar situations, however in our case the patient

is not me but my husband, a fit and supposedly healthy 32 yr old. He

was diagnosed with PSC a couple of weeks ago after more than 6 months

of tests - you can read his story in past posts. He was diagnosed with

ulcerative colitis when he was baout 20 and that was well under control

when all the PSC was discovered.

Since the diagnosis I have been madly scouring the internet to find

info and have been disheartened to read the same things that you wrote

about ie. there being no cause, no treatment and nothing you can really

do about it. However, this group has been fantastic - information from

PSC patients can be so much more helpful and reassuring than websites

and even doctors.

I haven't any advice to offer as yet but as I spend as much time as

possible searching for new info, I will be sure to post any findings,

although I don't presume to have anymore info than some of the longer

standing group members who have been so helpful with all my questions

to date.

When it comes to diet, all I know of so far is to increase calcium due

to the increased risk of osteoporosis and I guess eating organically

couldn't hurt? A few less toxins in the system is probably a good

thing. The other thing is to increase fish consumption and decrease

red meat but that is aimed more so at lowering the risk of bowel cancer

due to the increased risk associated with ulcerative colitis. The

latter is based on recent research but I can't personally vouch for

it's credibilty. Can't hurt, husband loves fish!

We have an appointment with my husband's new doc (liver specialist in

Melbourne, Australia) next Wednesday and I hope to get lots of

questions answered.

Good luck with everything.

Cheers,

Kate

Wife to Brad, 32 (PSC 08)

[Guest guest]

Hi nne,

It seems we are in similar situations, however in our case the patient

is not me but my husband, a fit and supposedly healthy 32 yr old. He

was diagnosed with PSC a couple of weeks ago after more than 6 months

of tests - you can read his story in past posts. He was diagnosed with

ulcerative colitis when he was baout 20 and that was well under control

when all the PSC was discovered.

Since the diagnosis I have been madly scouring the internet to find

info and have been disheartened to read the same things that you wrote

about ie. there being no cause, no treatment and nothing you can really

do about it. However, this group has been fantastic - information from

PSC patients can be so much more helpful and reassuring than websites

and even doctors.

I haven't any advice to offer as yet but as I spend as much time as

possible searching for new info, I will be sure to post any findings,

although I don't presume to have anymore info than some of the longer

standing group members who have been so helpful with all my questions

to date.

When it comes to diet, all I know of so far is to increase calcium due

to the increased risk of osteoporosis and I guess eating organically

couldn't hurt? A few less toxins in the system is probably a good

thing. The other thing is to increase fish consumption and decrease

red meat but that is aimed more so at lowering the risk of bowel cancer

due to the increased risk associated with ulcerative colitis. The

latter is based on recent research but I can't personally vouch for

it's credibilty. Can't hurt, husband loves fish!

We have an appointment with my husband's new doc (liver specialist in

Melbourne, Australia) next Wednesday and I hope to get lots of

questions answered.

Good luck with everything.

Cheers,

Kate

Wife to Brad, 32 (PSC 08)

[Guest guest]

Hi nne

Welcome and as Kate said you have been literally pushed into the

unknown with this disease, = there being no cause, no treatment and

nothing you can really do about it.

Also also Kate has said you could increase you calcium, I drink a

litre of calcium enriched with extra Vitiman D milk a day. I find if

I eat my meals as slowly as I can, I have a more settled stomach.

I know the board has a number of people who are feeling very well,

and they get as much information as they require and then just keep

on with their lives as ordinary.

I don't think there are many hockey players amongst us, so you add

a dimension to the group. Welcome again and hopefully any answers

you need are just a 'keyboard' away.

Best wishes from the bottom of the world in New Zealand

>

> Hi nne,

>

> It seems we are in similar situations, however in our case the

patient

> is not me but my husband, a fit and supposedly healthy 32 yr old.

He

> was diagnosed with PSC a couple of weeks ago

[Guest guest]

nne,

I liked this website for the clarity and

amount of information they give, without going into too much scientific terms.

http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease6 & organ=3 & disease=30 & lang_id=1

Regards,

Chaim Boermeester, Israel

From: [mailto: ] On Behalf Of jvasichek

Sent: Tuesday, July 29, 2008 18:32

To:

Subject: New

diagnosis

Hi Everyone,

I have just come across the yahoo group in searching the web for

information on PSC. I was just recently diagnosed in May with PSC. I

was diagnosed with Ulcerative Colitis in 2002 while I was a hockey

player at the University

of Minnesota Duluth.

The UC has always responded well to Asacol, after they diagnosed it.

To get to that point was another story. I know many of you are no

stranger to long waits and numerous appointments, as I have read in a

few of the posts. Since 2002 I have been on and off of the drug. I am

not a person that wants to take drugs if I don't have to.

I am a 25 year old healthy female. I have been athletic since I was a

kid and I trained quite seriously, to the elite level, when I was

playing ice hockey. Now I much more relaxed with exercising but

maintain a pretty slender, athletic build.

In January of 08, I began to itch. I did not go to see a doctor till

the end of March because at first I thought it was my detergent or

something else. When I started to itch my feet so much they were

bleeding, I knew it was time to go in. They found that my liver

enzymes were elevated. I don't have my records on me to know which

ones, I just know they were way above the normal limit.

Finding this, the doctor sent me for a liver ultrasound. From the

ultrasound they saw the inflammation in the Common Bile Duct. From

here I went back to the Gastro and he scheduled me for an ERCP. From

the ERCP brushings, there was no evidence of cancer, however he did

see some narrowing of the Common Bile Duct. His copy of the records

say, " ...hopefully we will not have to stent her very soon. "

Of course all of this is new to me. I had looked up on the Mayo Clinic

website for some questions to ask the Gastro. However, he proceeded to

tell me there is not much I can do but monitor it and go on living.

I really wanted to know more about the disease and especially how diet

affects it.

I have since moved back to Duluth,

Minnesota to work at UMD. I sent

my

records down to a recommended liver specialist 10 days ago, but have

not yet heard back on an appointment. The specialist is at the Mayo

Clinic in Rochester, MN. I am hoping I hear from them soon, but

again,

another waiting period!

I wanted to just introduce myself and I hope that I can get to know

more of you. I know that the support will really help. I am in the

dark about PSC and all anyone seems to say is, you cannot really treat

it (besides the Ursodiol 2x/day and Cholestyramine 4x/day, Asacol

3x/day), we don't know what causes it, we don't know how fast it will

progress, and the only treatment is a transplant. For me, athletics

has left me with a lot of mental toughness and I refuse to think that

is all I can do.

If anyone has any dietary suggestions I would really appreciate them.

Is there anything anyone has found that helps back off the symptoms?

Is there anything anyone would recommend to help with itching?

Even though I take the cholestyramine, I still am sometimes itching

like crazy. Even my nose, eyes, and ears itch but mostly by back and

feet. I also have been occasionally getting heartburn, and the other

day I actually threw a dinner up after I had some of the worst

heartburn I have had, rivaling some of my 2002 UC episodes.

I guess the greatest unknown for me now is, how am I supposed to tell

if it is getting worse or better? If I am itching more, is that bad?

If I am getting heartburn more often, is that related?

As you can see I have a lot of questions. I appreciate anyone taking

the time to read my story. I have accepted that I have this disease

and now I would like to be proactive. I thank you for your support.

nne Vasichek

[Guest guest]

nne,

I liked this website for the clarity and

amount of information they give, without going into too much scientific terms.

http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease6 & organ=3 & disease=30 & lang_id=1

Regards,

Chaim Boermeester, Israel

From: [mailto: ] On Behalf Of jvasichek

Sent: Tuesday, July 29, 2008 18:32

To:

Subject: New

diagnosis

Hi Everyone,

I have just come across the yahoo group in searching the web for

information on PSC. I was just recently diagnosed in May with PSC. I

was diagnosed with Ulcerative Colitis in 2002 while I was a hockey

player at the University

of Minnesota Duluth.

The UC has always responded well to Asacol, after they diagnosed it.

To get to that point was another story. I know many of you are no

stranger to long waits and numerous appointments, as I have read in a

few of the posts. Since 2002 I have been on and off of the drug. I am

not a person that wants to take drugs if I don't have to.

I am a 25 year old healthy female. I have been athletic since I was a

kid and I trained quite seriously, to the elite level, when I was

playing ice hockey. Now I much more relaxed with exercising but

maintain a pretty slender, athletic build.

In January of 08, I began to itch. I did not go to see a doctor till

the end of March because at first I thought it was my detergent or

something else. When I started to itch my feet so much they were

bleeding, I knew it was time to go in. They found that my liver

enzymes were elevated. I don't have my records on me to know which

ones, I just know they were way above the normal limit.

Finding this, the doctor sent me for a liver ultrasound. From the

ultrasound they saw the inflammation in the Common Bile Duct. From

here I went back to the Gastro and he scheduled me for an ERCP. From

the ERCP brushings, there was no evidence of cancer, however he did

see some narrowing of the Common Bile Duct. His copy of the records

say, " ...hopefully we will not have to stent her very soon. "

Of course all of this is new to me. I had looked up on the Mayo Clinic

website for some questions to ask the Gastro. However, he proceeded to

tell me there is not much I can do but monitor it and go on living.

I really wanted to know more about the disease and especially how diet

affects it.

I have since moved back to Duluth,

Minnesota to work at UMD. I sent

my

records down to a recommended liver specialist 10 days ago, but have

not yet heard back on an appointment. The specialist is at the Mayo

Clinic in Rochester, MN. I am hoping I hear from them soon, but

again,

another waiting period!

I wanted to just introduce myself and I hope that I can get to know

more of you. I know that the support will really help. I am in the

dark about PSC and all anyone seems to say is, you cannot really treat

it (besides the Ursodiol 2x/day and Cholestyramine 4x/day, Asacol

3x/day), we don't know what causes it, we don't know how fast it will

progress, and the only treatment is a transplant. For me, athletics

has left me with a lot of mental toughness and I refuse to think that

is all I can do.

If anyone has any dietary suggestions I would really appreciate them.

Is there anything anyone has found that helps back off the symptoms?

Is there anything anyone would recommend to help with itching?

Even though I take the cholestyramine, I still am sometimes itching

like crazy. Even my nose, eyes, and ears itch but mostly by back and

feet. I also have been occasionally getting heartburn, and the other

day I actually threw a dinner up after I had some of the worst

heartburn I have had, rivaling some of my 2002 UC episodes.

I guess the greatest unknown for me now is, how am I supposed to tell

if it is getting worse or better? If I am itching more, is that bad?

If I am getting heartburn more often, is that related?

As you can see I have a lot of questions. I appreciate anyone taking

the time to read my story. I have accepted that I have this disease

and now I would like to be proactive. I thank you for your support.

nne Vasichek

[Guest guest]

Hi nne, my name is and work in Duluth, live outside of Two Harbors. I was diagnosed with PSC 14 years ago and in the last year was just placed on the liver transplant list. I occasionally check into this site and hadn't for months until today (over 7000 EMAILS in it) I had to let you know someone close know what you are going through. I am on Rifampin which has been a lot more helpful with the itching.

The thing about PSC is it is sooo unpredictable. There will be times you feel fine and then others that aren't so great. When I've asked about diet, my Dr. has suggested sticking to a Mediterranean type diet. I don't know that I'm so good at that. I am on fat soluble vitamins that tend to be low with advanced liver disease. It really depends on where your at with the disease. I see a Hepatologist from Mayo Clinic that also come to SMDC about 1 or 2 times a month. If you'd like to talk some time, EMAIL me at bhighmark@.... I check that mail more often! Take care, Highmark

Subject: New diagnosisTo: Date: Tuesday, July 29, 2008, 11:31 AM

Hi Everyone,I have just come across the yahoo group in searching the web forinformation on PSC. I was just recently diagnosed in May with PSC. Iwas diagnosed with Ulcerative Colitis in 2002 while I was a hockeyplayer at the University of Minnesota Duluth.The UC has always responded well to Asacol, after they diagnosed it.To get to that point was another story. I know many of you are nostranger to long waits and numerous appointments, as I have read in afew of the posts. Since 2002 I have been on and off of the drug. I amnot a person that wants to take drugs if I don't have to.I am a 25 year old healthy female. I have been athletic since I was akid and I trained quite seriously, to the elite level, when I wasplaying ice hockey. Now I much more relaxed with exercising butmaintain a pretty slender, athletic build.In January of 08, I began to itch. I did not go to see a doctor

tillthe end of March because at first I thought it was my detergent orsomething else. When I started to itch my feet so much they werebleeding, I knew it was time to go in. They found that my liverenzymes were elevated. I don't have my records on me to know whichones, I just know they were way above the normal limit. Finding this, the doctor sent me for a liver ultrasound. From theultrasound they saw the inflammation in the Common Bile Duct. Fromhere I went back to the Gastro and he scheduled me for an ERCP. Fromthe ERCP brushings, there was no evidence of cancer, however he didsee some narrowing of the Common Bile Duct. His copy of the recordssay, "...hopefully we will not have to stent her very soon."Of course all of this is new to me. I had looked up on the Mayo Clinicwebsite for some questions to ask the Gastro. However, he proceeded totell me there is not much I can do but monitor it

and go on living. I really wanted to know more about the disease and especially how dietaffects it.I have since moved back to Duluth, Minnesota to work at UMD. I sent myrecords down to a recommended liver specialist 10 days ago, but havenot yet heard back on an appointment. The specialist is at the MayoClinic in Rochester, MN. I am hoping I hear from them soon, but again,another waiting period!I wanted to just introduce myself and I hope that I can get to knowmore of you. I know that the support will really help. I am in thedark about PSC and all anyone seems to say is, you cannot really treatit (besides the Ursodiol 2x/day and Cholestyramine 4x/day, Asacol3x/day), we don't know what causes it, we don't know how fast it willprogress, and the only treatment is a transplant. For me, athleticshas left me with a lot of mental toughness and I refuse to think thatis all I can

do.If anyone has any dietary suggestions I would really appreciate them.Is there anything anyone has found that helps back off the symptoms?Is there anything anyone would recommend to help with itching?Even though I take the cholestyramine, I still am sometimes itchinglike crazy. Even my nose, eyes, and ears itch but mostly by back andfeet. I also have been occasionally getting heartburn, and the otherday I actually threw a dinner up after I had some of the worstheartburn I have had, rivaling some of my 2002 UC episodes.I guess the greatest unknown for me now is, how am I supposed to tellif it is getting worse or better? If I am itching more, is that bad?If I am getting heartburn more often, is that related?As you can see I have a lot of questions. I appreciate anyone takingthe time to read my story. I have accepted that I have this diseaseand now I would like to be proactive. I

thank you for your support.nne Vasichek

[Guest guest]

Hi Misty

Welcome to our group, I am so glad you found us so quickly. There

is so much information and support available here.

You will have lots of questions to ask your specialist, there are

over a thousand people here who can assist you as what to ask.

If you are searching for something specific (learning about PSC, is

a bit like learning a new language... grin) in the previous posts

there is a search area just above the posts to type key words in.

Best wishes from the bottom of the world in New Zealand

>

> Hi.

>

> Well, my husband just found out yesterday that he has PSC. We don't

know all the details of his diagnosis, he has an appointment with a

specialist next week.

>

> My question is, what to expect? Also, what can we do to make sure

he has a healthy life? I want to do everything I can to help him stay

well....

>

> I feel at such a loss.....

>

> Any help would be so appreciated!

>

[Guest guest]

Hi Misty

Welcome to our group, I am so glad you found us so quickly. There

is so much information and support available here.

You will have lots of questions to ask your specialist, there are

over a thousand people here who can assist you as what to ask.

If you are searching for something specific (learning about PSC, is

a bit like learning a new language... grin) in the previous posts

there is a search area just above the posts to type key words in.

Best wishes from the bottom of the world in New Zealand

>

> Hi.

>

> Well, my husband just found out yesterday that he has PSC. We don't

know all the details of his diagnosis, he has an appointment with a

specialist next week.

>

> My question is, what to expect? Also, what can we do to make sure

he has a healthy life? I want to do everything I can to help him stay

well....

>

> I feel at such a loss.....

>

> Any help would be so appreciated!

>

[Guest guest]

Hi Misty

Welcome to our group, I am so glad you found us so quickly. There

is so much information and support available here.

You will have lots of questions to ask your specialist, there are

over a thousand people here who can assist you as what to ask.

If you are searching for something specific (learning about PSC, is

a bit like learning a new language... grin) in the previous posts

there is a search area just above the posts to type key words in.

Best wishes from the bottom of the world in New Zealand

>

> Hi.

>

> Well, my husband just found out yesterday that he has PSC. We don't

know all the details of his diagnosis, he has an appointment with a

specialist next week.

>

> My question is, what to expect? Also, what can we do to make sure

he has a healthy life? I want to do everything I can to help him stay

well....

>

> I feel at such a loss.....

>

> Any help would be so appreciated!

>