Newly Diagnosed, Trying to Understand

[Guest guest]

I was just diagnosed with PSC on February 4th, 2008. This took

almost 3 years to get answered and now that I know the name of what I

am dealing with, I am trying to figure out how to understand it.

I feel like I need a PSC-101 course. I have so many questions and

just don't even know where to start. I know I am in phase one and

the GI doctor says a liver transplant is likely at least 15 years

away. It brings to mind the scene from Austin Powers where the steam

roller is coming so slowly and the guy can't get out of the way. I

just know how serious or devestating this really is.

I was diagnosed with inflammatory bowel disease / colitis (but not

ulcerative) last summer.

As of January 1st of this year, my husband and I went to a mostly

organic diet just to see if that would help any of my symptoms. My

itching essentially went away. Then with my diagnosis, the doctor

put me on Urso and Colazal and the itching has returned. The Colazal

was supposed to help my colitis but it has not.

I'm trying to develop a list of questions for my doctor, so would

love any input on that.

I'm glad to have found a group like this and look forward to learning

more.

[Guest guest]

,

PSC often does take a long time to diagnose as it did in your case.

Then it progresses slowly, so you have ample time to study PSC and how

it affects you. Don't let it take over your life though, its there,

you know about it, live prepared for it, not defined by it.

Keep records and notes of medications and other changes you make and

how you respond. Since with your new meds itching has returned, check

with your doctor about discontinuing one to see which (if either) is

causing the renewed itching.

Look at the resources at our sister site, http://www.pscpartners.org/,

with their newsletters, brochure and links to PSC literature. The

brochure, " Living with PSC " ,

http://www.pscpartners.org/PSCBrochure.pdf, can be helpful in

explaining PSC to those with whom you want to share this part of your

life.

Just reading what goes on here will greatly inform you. You will also

have questions of your own which others here will answer. In time you

may become one of the " experts " on PSC.

Tim R, dx 1989, tx 1998 & 2007

>

> I was just diagnosed with PSC on February 4th, 2008. This took

> almost 3 years to get answered and now that I know the name of what I

> am dealing with, I am trying to figure out how to understand it.

[Guest guest]

Welcome ;

I started taking the PSC-101 course almost 5 years ago, and I'm still

taking it. I like your analogy with the steamroller in Austin Powers.

My strategy has been to try to fill myself up with every drop of

information about PSC, almost to the point where I think I'm going to

explode. I'm hoping that when the steamroller does hit, I will then

be so bloated that I bounce off. But if I'm wrong there will be one

heck of an explosion!

Feel free to ask any questions, and we'll do our best to answer.

Best regards.

Dave

(father of (22); PSC 07/03; UC 08/03)

> It brings to mind the scene from Austin Powers where the steam

> roller is coming so slowly and the guy can't get out of the way.

[Guest guest]

Hi -welcome to the group. my husband was diagnosed with psc last

year.this group has been very helpful, not just with medical

information, but with emotional support as well.

my husband and i recently met with dr.kris kowdley (he is involved in

urso research and has 15 years of experience with psc) and he stressed

the importance of yearly colonoscopy. dr. kowdley said 35 to 40

biopsies should be taken during colonoscopy due to the very increased

risk of colon cancer.

My husband takes milk thistle,drinks goji juice(high in

antioxidants)asacol,urso and does hot yoga. dr.kowdley said to eat

protein and stay fit. Most importantly he said if your feeling good,your

blood work is good, than just go on with your life and try not to worry

about it. This is a disease that waxes and wanes and not everyone will

need a liver transplant says dr.kowdley. his urso study was approved for

another 5 years. he also believes in checking blood for any vitamin and

high cholesterol that can be caused by psc.

all the best,

rachel(alex 41 uc 98 psc 06)

>

> I was just diagnosed with PSC on February 4th, 2008. This took

> almost 3 years to get answered and now that I know the name of what I

> am dealing with, I am trying to figure out how to understand it.

>

> I feel like I need a PSC-101 course. I have so many questions and

> just don't even know where to start. I know I am in phase one and

> the GI doctor says a liver transplant is likely at least 15 years

> away. It brings to mind the scene from Austin Powers where the steam

> roller is coming so slowly and the guy can't get out of the way. I

> just know how serious or devestating this really is.

>

> I was diagnosed with inflammatory bowel disease / colitis (but not

> ulcerative) last summer.

>

> As of January 1st of this year, my husband and I went to a mostly

> organic diet just to see if that would help any of my symptoms. My

> itching essentially went away. Then with my diagnosis, the doctor

> put me on Urso and Colazal and the itching has returned. The Colazal

> was supposed to help my colitis but it has not.

>

> I'm trying to develop a list of questions for my doctor, so would

> love any input on that.

>

> I'm glad to have found a group like this and look forward to learning

> more.

>

>

>