Re: newly diagnosed w psc... what do we expect

[Guest guest]

-Welcome to the group.I am sorry to hear about your dx, but you have found a great group of knowledgeable peeps! Some people have to have liver transplants, others don't. Some live with PSC for years, no symptoms, others, not so much. It is all different.You are welcome to read about my brother's experience, I started a blog back in 2006, he was transplanted in Dec 07., his blog is http://www.savedusty.blogspot.com/, other's here have caringbridge pages and blogs as well.Welcome and good luck to you! in TexasBrother, , 32, UC & PSC, transplant 12-12-07-and doing FANTASTIC!!!!Subject: newly diagnosed w psc... what do we expectTo: Date: Monday, September 15, 2008, 10:39 AM

Hi guys. My name is and I was just diagnosed w psc about a

month ago. I am an RN but this is outta my league since I deliver

babies for a living. LOL. I had ulcerative colitis at age 16(will be 35

next month), had a total colectomy w ileoanal anastamosis at age 18 and

have been pretty healthy since. With both my pregnancies (98 and 02) I

had elevated liver enzymes and high blood pressure but they diagnosed

me w pre eclampsia. Few years later, i had routine labs and my LFTs

were up but they said it was fatty liver. Off and on for last 5-6 years

i have had intermittent itching but no one put any of this together

until June and July. The itching was so intense and lasted for the

whole month. I insisted on more LFTs and my PCP referred me to a GI

doc. I had an MRCP and then ERCP and was diagnosed w psc. Now i am

completely stunned and not sure what to expect. I have done the

research but i wanna know from real ppl what the next few months to

years hold. I just got remarried and have young children at home. I'm

trying to not get too down but uncertainty is killing me. Please help

Thnx

Tiff in Indiana

[Guest guest]

Hi Tiff, so sorry to hear about your diagnosis. I am also 34 and have

two young children (and no colon, how about that!), so I think I know

how you feel: terrible. I was diagnosed almost 4 months ago and I'm

still absorbing the news. The uncertainty is so scary. For me it's

tough because I'm normally so " solution-oriented " - as soon as I

identify a problem I go about solving it. Well, there is no " solving "

this one. You have to learn to live with something terrible (or

potentially terrible) that you have no control over. It makes

decision-making about the future very difficult.

If you are a working mom like I am, then you probably have very

little time and resources for yourself. People keep telling me (and

they are right) to find a space for myself to be sad, upset, angry,

anxious - all the negative feelings I'm feeling now that I don't

usually feel or express because I'm too busy being competent and

running my household/career. That's been really hard for me and I

think I've really turned my pain inward. I see a therapist once a

week, but 45 minutes a week isn't much. The rest of the time - when

I'm with the kids, working, or even with my husband, who has a very

stressful job and probably doens't want to be reminded daily that he

might end up a caregiver or a widower - I turn my negativity inward.

It's hard.

So know that you are not alone. Also know that PSC is NOT a death

sentence. Based on what I've read on this forum, PSC can mean

unpleasant symptoms and some lifestyle compromises. It may also mean

rough patches in the future. But another thing I've learned on this

forum is people's _amazing_ capacity to be resilient, loving,

optimistic, caring, funny, and productive despite and through these

rough patches.

Hopefully you will be one of the lucky ones for whom the disease

progresses slowly. In the mean time, please find an outlet for your

feelings (this group can be one, a couselor, a hobby). Give yourself

the space to experience all of the thoughts and feelings that this

diagnosis will raise. Know that you are not alone - you are part of a

community.

Also try to be aware that diagnosis can lead to positive things:

connections with loved ones, appreciation for things you love about

your life, living mindfully every day. For me, the diagnosis meant a

lapse in the denial we all live in about our own vulnerability. The

positive response to this is to embrace life to the fullest. Though

it's easier said than done (so many constraints...), there are many

ways in which we can live our day-to-day life in a way that more

fully expresses our values, passions, and identities.

Ruth

UC - 2000, Colectomy - 2007, PSC - 2008

>

> Hi guys. My name is and I was just diagnosed w psc about a

> month ago. I am an RN but this is outta my league since I deliver

> babies for a living. LOL. I had ulcerative colitis at age 16(will

be 35

> next month), had a total colectomy w ileoanal anastamosis at age 18

and

> have been pretty healthy since. With both my pregnancies (98 and

02) I

> had elevated liver enzymes and high blood pressure but they

diagnosed

> me w pre eclampsia. Few years later, i had routine labs and my

LFTs

> were up but they said it was fatty liver. Off and on for last 5-6

years

> i have had intermittent itching but no one put any of this together

> until June and July. The itching was so intense and lasted for the

> whole month. I insisted on more LFTs and my PCP referred me to a GI

> doc. I had an MRCP and then ERCP and was diagnosed w psc. Now i am

> completely stunned and not sure what to expect. I have done the

> research but i wanna know from real ppl what the next few months to

> years hold. I just got remarried and have young children at home.

I'm

> trying to not get too down but uncertainty is killing me. Please

help

> Thnx

> Tiff in Indiana

>

[Guest guest]

Hi ,

For some reason the message I wrote to you a few hours ago did not

make it through cyberspace.

As from Texas said already, there is not much that can be

said to predict what will happen in the coming years. Some people

live with PSC for 30 years without any real symptoms, others need a

transplant after just a few years.

The one good thing you can see in your diagnose is that at last you

know what is wrong and why you were having the symptoms you describe.

Although there is no cure or treatment for PSC at the moment,

symptoms can be treated and precautions taken.

Reading your post I don't think you need my regular sales pitch about

being pro-active and assertive about your health. You seem to let

doctors know what you expect from them. Maybe you being a RN helps

with that.

My diagnose changed my life, but not only in a bad way. After the

first year depression I started living healthier, exercizing more,

being more aware of what I eat, appreciating little happy things in

day to day life a little more.

The first year was hard on me. I didn't know anything about PSC, knew

no-one with PSC, and when I started searching the internet,

depression came to me from all directions. I gained 20+ pounds in

that year. My attitude was " who cares? I won't live long enough to

face the consequences of heart disease anyway " . First lurking, and

later participating in this group turned my attitude around, and I am

happy it did. Knowledge is power and it also realy makes a difference

to know that you are not alone.

Please ask anything you want to know, there is always someone who

experienced what you are going through. We don't mind questions about

bowel movements or other bodily functions and we don't mind when you

vent your doubts and fears.

Welcome again,

Chaim Boermeester, Israel

[Guest guest]

welcome Tiff,

I've just read the other replies and they are good! I've had PSC a long time, but only found and joined the group about a year ago, We offer you as much support and prayer as we can give, just ask or vent. Pamphletes about PSC can be found at the website for PSC Partners Seeking a Cure, you might find them helpful.

Ian (52) PSC 89