RE: It's official, I have PSC. :-(

[Guest guest]

,

Sorry to hear about your diagnosis, but I

am happy you found us. I can tell you that for me it helps a lot to read and

write here and to know that I am not alone. There are people on this forum who

are very knowledgeable about PSC and there is a lot to learn about PSC.

May I ask why the hepatologist recommended

not to have any children anymore? This is new to me.

I have a yearly ultrasound and a consult

with my hepatologist every 6 months as well. I also do a yearly bone density

test. You didn't mention medication. I take vitamins A, D, E and K and I take

30mg/kg of body weight UDCA (ursodiol) per day. It is recommended to eat lots

of fish or take fish oil supplements, especially the ones that have a lot of

DHA in it.

I don't need any pain management at this

time.

Why did your hepatologist tell you to stay

out of the sun? My understanding is that sunlight helps against itching. There

are special treatments that use artificial light as well. There are also meds

that help, but I am not so familiar with that.

Chaim Boermeester, Israel

From:

[mailto: ] On Behalf Of Nunya

Sent: Tuesday, August 07, 2007

04:51

To: psc

Subject: It's

official, I have PSC. :-(

Last Friday I saw my hepatologist for a follow up from my ERCP.

He said " good news and bad news....good news is you don't need surgery,

bad news is you have primary sclerosing cholangitis. " I

guess it's not the worst thing in the world.

He told me that I should not have any more children. I have 4

already, I know that's a lot for some people and that I'm fortunate to have

them. We weren't really planning on having more but I just, I don't

know.......I'm just upset about the diagnosis I guess. I will give

myself some time and then carry on with my life I guess.

As far as the ERCP, he said that my ducts are affected but that they

aren't as constricted as shown on the MRCP so I will not need surgery

now. I will see him every 6 months for u/s's and blood work.

Is that the normal course of care? Do you all see hepatologists

or do you just see regular doctors?

Do you guys have pain? If so, what do you do about it? I

have very frequent right upper quadrant pain and I don't know what to do about

it. Sometimes it's all over up under my ribs and in my back. It's

not ulcer pain or anythign like that. I don't want to take pain pills, I

hate them. Any suggestions?

The ITCHING! Oh my goodness.......sometimes it's just

unbearable. Like now. He told

me to stay out of the sun and try to not sweat, lol, but what else helps?

I've tried Oatmeal baths and stuff like that but they don't work either.

Sorry for such a long post. I guess I kind of knew it was coming

but I was praying that it wasn't, you know. I look forward to getting to

know you all and hope that I'll be able to contribute to the group instead of

just ask questions, lol.

Age 24

Dx Primary Sclerosing Cholangitis (Stage 1)

8/07

Twin boys born 5/4/07...Adam & Caleb

Two older children... (6) & (2)

Take the Internet to Go: Yahoo!Go puts the Internet

in your pocket: mail, news, photos more.

[Guest guest]

,

Sorry about your diagnosis, but welcome to the group. From reading the posts, one soon finds that all us are different and have different symptoms and reactions to different drugs, but most of us are taking ursodiol and find it helpful. Its an imitation bear bile that helps with the bile

flow (backed up bile can be a cause of itchiness). Your herpetologist telling you you shouldn't have any more children makes me question how knowledgeable he (or she) is about the disease.

I pray that you and your family still receive lots of God's blessings.

Ian 51 PSC 89

Last Friday I saw my hepatologist for a follow up from my ERCP. He said " good news and bad news....good news is you don't need surgery, bad news is you have primary sclerosing cholangitis. "

I guess it's not the worst thing in the world.

He told me that I should not have any more children. I have 4 already, I know that's a lot for some people and that I'm fortunate to have them. We weren't really planning on having more but I just, I don't know.......I'm just upset about the diagnosis I guess. I will give myself some time and then carry on with my life I guess.

As far as the ERCP, he said that my ducts are affected but that they aren't as constricted as shown on the MRCP so I will not need surgery now. I will see him every 6 months for u/s's and blood work.

Is that the normal course of care? Do you all see hepatologists or do you just see regular doctors?

Do you guys have pain? If so, what do you do about it? I have very frequent right upper quadrant pain and I don't know what to do about it. Sometimes it's all over up under my ribs and in my back. It's not ulcer pain or anythign like that. I don't want to take pain pills, I hate them. Any suggestions?

The ITCHING! Oh my goodness.......sometimes it's just unbearable. Like now. He told me to stay out of the sun and try to not sweat, lol, but what else helps? I've tried Oatmeal baths and stuff like that but they don't work either.

Sorry for such a long post. I guess I kind of knew it was coming but I was praying that it wasn't, you know. I look forward to getting to know you all and hope that I'll be able to contribute to the group instead of just ask questions, lol.

Age 24

Dx Primary Sclerosing Cholangitis (Stage 1) 8/07

Twin boys born 5/4/07...Adam & Caleb

Two older children... (6) & (2)

Take the Internet to Go: Yahoo!Go puts the Internet in your pocket:

mail, news, photos more.

-- Ian Cribb P.Eng.

[Guest guest]

,

Some people do have pain with PSC, and I was one of them. It was generally just below my rib cage sort of in the middle, but sometimes it is hard to tell. I also have UC, and that can cause similar pain in the abdominal area.

I didn't like taking pain medication either, but sometimes it helps. I found that if the pain wasn't too severe, I could distract myself from the pain with a book, a movie, computer, etc. If I couldn't distract myself from the pain, I would take medication, usually tylenol-3 that the doctor had prescribed. Also, if I couldn't sleep due to the pain, I would take medication. If I didn't take pain medication when it really hurt, I would tend to lay there feeling badly which usually wasn't helpful to me or my family.

Itching is also something many of us experience and I have had alot of it.

Some people have success with different medications for that, but I never did. I learned to stop scratching before I felt satisfied, or I would bleed.

I also don't know the reason for the recommendation not to have more children. I would try to find out why, and ask for a second opinion on that.

I wonder if the reason for avoiding the sun is medication you are on? I am on sulfasalazine for UC, and that has warnings on it to avoid much sun exposure.

Blessings,

Darryl

PSC/UC 12/96, Tx 2/02

-----Original Message-----

From: Nunya jmhette2@...

Last Friday I saw my hepatologist for a follow up from my ERCP. He said "good news and bad news....good news is you don't need surgery, bad news is you have primary sclerosing cholangitis." I guess it's not the worst thing in the world.

He told me that I should not have any more children. I have 4 already, I know that's a lot for some people and that I'm fortunate to have them. We weren't really planning on having more but I just, I don't know.......I'm just upset about the diagnosis I guess. I will give myself some time and then carry on with my life I guess.

As far as the ERCP, he said that my ducts are affected but that they aren't as constricted as shown on the MRCP so I will not need surgery now. I will see him every 6 months for u/s's and blood work.

Is that the normal course of care? Do you all see hepatologists or do you just see regular doctors?

Do you guys have pain? If so, what do you do about it? I have very frequent right upper quadrant pain and I don't know what to do about it. Sometimes it's all over up under my ribs and in my back. It's not ulcer pain or anythign like that. I don't want to take pain pills, I hate them. Any suggestions?

The ITCHING! Oh my goodness.......sometimes it's just unbearable. Like now. He told me to stay out of the sun and try to not sweat, lol, but what else helps? I've tried Oatmeal baths and stuff like that but they don't work either.

Sorry for such a long post. I guess I kind of knew it was coming but I was praying that it wasn't, you know. I look forward to getting to know you all and hope that I'll be able to contribute to the group instead of just ask questions, lol.

Age 24

Dx Primary Sclerosing Cholangitis (Stage 1) 8/07

Twin boys born 5/4/07...Adam & Caleb

Two older children... (6) & (2)

Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news, photos more.

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[Guest guest]

, We welcome you to the group that has become to alot of us our extended family. You will find any question you ask answered by someone, or many of us. I have the itching problem, that can really ruin your quality of life, and make you miserable. I asked my doctor (yes, sometimes you have to be the one to suggest trying something) about trying Rifampin for my itching and I have been on it for about a year now, while it has not completely taken it away, it has cetainly helped tremendously. There are other things that I am sure others will suggest. I take one 150 mg rifampin in the morning and one at night. Also where do you live, you may have someone that has PSC that lives near you and that can also be a great comfort, hang in there there is much to learn and we will be supportive.

Bettyann (SC)

It's official, I have PSC. :-(

Last Friday I saw my hepatologist for a follow up from my ERCP. He said "good news and bad news....good news is you don't need surgery, bad news is you have primary sclerosing cholangitis." I guess it's not the worst thing in the world.

Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news, photos more.

[Guest guest]

Dear ,

Sorry to hear your bad news, do not be discouraged. we are here for

you. My husband has PSC too, but we found a way to live with it.

for the itching, there is a pill you can take (ask your doctor about

it first) called " telfast " . this is what my husband got and it

helped a lot. and for the pain, do you feel it after you have a

heavy meal? this is what my husband was feeling and so he eats more

meals but smaller ones.

You are blessed to have your children, they should give you the

energy.

take care

Sally

(wife of Amos PSC 2005)

>

> Last Friday I saw my hepatologist for a follow up from my ERCP.

He said " good news and bad news....good news is you don't need

surgery, bad news is you have primary sclerosing cholangitis. " I

guess it's not the worst thing in the world.

>

> He told me that I should not have any more children. I have 4

already, I know that's a lot for some people and that I'm fortunate

to have them. We weren't really planning on having more but I just,

I don't know.......I'm just upset about the diagnosis I guess. I

will give myself some time and then carry on with my life I guess.

>

> As far as the ERCP, he said that my ducts are affected but that

they aren't as constricted as shown on the MRCP so I will not need

surgery now. I will see him every 6 months for u/s's and blood

work.

>

> Is that the normal course of care? Do you all see hepatologists

or do you just see regular doctors?

>

> Do you guys have pain? If so, what do you do about it? I have

very frequent right upper quadrant pain and I don't know what to do

about it. Sometimes it's all over up under my ribs and in my back.

It's not ulcer pain or anythign like that. I don't want to take

pain pills, I hate them. Any suggestions?

>

> The ITCHING! Oh my goodness.......sometimes it's just

unbearable. Like now. He told me to stay out of the sun and try

to not sweat, lol, but what else helps? I've tried Oatmeal baths

and stuff like that but they don't work either.

>

> Sorry for such a long post. I guess I kind of knew it was

coming but I was praying that it wasn't, you know. I look forward

to getting to know you all and hope that I'll be able to contribute

to the group instead of just ask questions, lol.

>

>

>

> Age 24

> Dx Primary Sclerosing Cholangitis (Stage 1) 8/07

> Twin boys born 5/4/07...Adam & Caleb

> Two older children... (6) & (2)

>

>

>

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

> Take the Internet to Go: Yahoo!Go puts the Internet in your

pocket: mail, news, photos & more.

>

[Guest guest]

Arne,

Your right of course. It was late at night, I had copy and pasted from 's message, but my spell check flagged it. I thought she must have got some vowel wrong so I let the spell check change it obviously with noticing what it was changing it to.

Ian

I suspect you may have meant hepatologist? :)Arne---- Ian Cribb <

icribb@...> wrote:=============,...Your herpetologist telling you you shouldn't have any more children makes me question how knowledgeable he (or she) is about the disease.

-- Ian Cribb P.Eng.

[Guest guest]

> , Sorry about your diagnosis, but welcome to the group.

From reading the posts,

> > Last Friday I saw my hepatologist for a follow up from my

ERCP. He said " good news and bad news....good news is you don't need

surgery, bad news is you have primary sclerosing cholangitis. "

I think I'm late in welcoming you, , but I'm glad you've found

this board --and very sorry for your diagnosis. I am very sporadic

in reading and posting here, but I've found the board and the many

wonderful 'members' here to be invaluable, always welcoming and

helpful.

> > I will see him every 6 months for u/s's and blood work. Is that

the normal course of care? Do you all see hepatologists or do you

just see regular doctors?

My son has monthly LFT's since dx 7months ago, has not had another

u/s, but has had an MRCP since then. My son see's both GI's and

Hep's. He was already established with a local GI for 51/2 yrs prior

to dx b/c of a genetic GI condition, but we've also branched out to

the 2 " big " hospitals in outlying areas (both are translpant

hospitals, 1 specializes in our son's genetic condition also and we

had a loose connection there already).

> > Do you guys have pain? If so, what do you do about it? I have

very frequent right upper quadrant pain and I don't know what to do

about it. Sometimes it's all over up under my ribs and in my back.

It's not ulcer pain or anythign like that. I don't want to take

pain pills, I hate them. Any suggestions?

I'll leave suggestions for others here who can offer real help, but

to answer your first question my son does have pain (mostly IBD pain

we believe although he had intermittent trouble w/ URQP before his

IBD pains overrode everything else). He is on several meds for his

IBD and hives.

Congrats on your new babies --5/07, wow.

--Meghan, mom to Wyatt (12yo, FAP 8/01, PSC 1/07, UC 1/07-then

Crohn's 6/07, a/i hives 6/07, neurotic mother 9/94+)

[Guest guest]

,

I'm sorry to hear about your diagnosis. I'm glad you found us.

We benefit from each others knowledge, and we moan a bit for each others pain, and take some joy from each others gains no matter how small.

So ... I'm sorry and welcome.

May GOD richly bless you !!!

Though it sounds as if HE has at least 4 times ...

- 45

PSC, Crohns 2000 (one bout of jaundice, no other symptoms)

> Sorry for such a long post. I guess I kind of knew it was coming but I was praying that it wasn't, you know. I look forward to getting to know you all and hope that I'll be able to contribute to the group instead of just ask questions, lol. > > > > Age 24 > Dx Primary Sclerosing Cholangitis (Stage 1) 8/07> Twin boys born 5/4/07...Adam & Caleb> Two older children... (6) & (2)> > > > ---------------------------------> Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news, photos & more.>