RE: New and need advice

[Guest guest]

Dear ;

Welcome to the group ... as we are inclined to say, sorry that your

PSC brings you here, but glad that you found us!

In terms of diet, I'd recommend reading this patient brochure from

the Falk Foundation:

Information for Patients with Liver Diseases including Guidelines

for Nutrition. Author: S.-D. Müller (80 pages) F80e.pdf

http://www.falkfoundation.com/pdf/F80e.pdf

Because it sounds like you have esophageal varices developing, you

will probably need to work very closely with your physician(s) to

develop a diet that will minimize the chances of bleeding; for

instance, I think that vitamin K is especially important for

promoting blood clotting, and so it would be good to check whether

your vitamin K level is O.K., and take supplements if it is found to

be deficient. At the same time you might want to avoid taking

medications or supplements that inhibited blood clotting. The exact

diet/supplements suitable for you might depend on other factors such

as whether or not you are experiencing hepatic encephalopathy or

ascites, or whether you have specific fat-soluble vitamin

deficiencies?

Your current dose of ursodiol is 15.6 mg/kg per day. Many in this

group are taking doses of 26 to 30 mg/kg/day because preliminary

data suggests that this higher dose might delay disease progression,

at least in the early stages of PSC. However, clinical trials to

test this are still in progress. You might consult with your doctor

(s) about increasing this dose?

Best regards,

Dave

(father of (20); PSC 07/03; UC 08/03)

[Guest guest]

Welcome !

I could not find any books, I do not think there are any around - except for highly technical textbooks on Hepatology in which PSC would only be a chapter on the clinical presentation.

The internet is the best resource for information. There are a lot of links on the links page of this group and some documents in the Files section that can help fill in your background knowledge.

And of course a group like this is a endless source of information, experience and advice.

As far as diet goes, I saw a Dietician early on, after my UC dx (April 2005), she specializes in IBD's and works closely with my original GI.

I visited her weekly for a while to gauge progress and to adjust the diet.

With my PSC dx (September/October 2005) I returned promptly to her and we further adopted my diet.

[i was also diagnosed with Insulin Resistance in-between April and October, so my diet is predominantly Low Glycemic Index based.]

The outlines of my diet is:

Avoid Fat and Fatty proteins (steak) for the PSC and the liver. (I live in SOuth Africa nd we eat vast amounts of red-meat in our normal diet) (PSC)

Cut out alcohol, Cafeine, ALL Fizzy drinks (Coke, Pepsi, etc.), acidic juices (orange, pineaple, etc.). (PSC & UC)

Avoid legumes (UC).

Avoid Wheat products and cereals (UC)

I also had to cut out all sugars and limit my vegetables and fruits to slow releasing sugars (this rules out Beetroot, Bananas, Paw-paws, Grapes, etc.)

I find that the diet becomes very personally customized and careful monitoring of ill-side effects of foods is the key to adjusting your diet over time.

The input of a well informed Professional dietician is also invaluable.

Good luck,

-SJ

From: [mailto: ] On Behalf Of lovencbeachesSent: 05 March 2006 07:08 AMTo: Subject: New and need advice

Hey ya'll! I am new to the group and am so glad I found you all! My name is and have PSC/98 and UC/02. I had been aysmptomatic for a long time but recently had some problems: pancreatitis which resulted in having my gall bladder out (2002), and last year I had my fist and only child, but it took a toll on my body. During my pregnancy my blood wasn't clotting well and I bled heavily after delivery ( I had to have 15 transfusions (7 red and 8 plasma). In Nov, I had an ERCP which revealed tiny varices in my esophogus and was put on blood pressure meds. I am worried that this is all a sign that my PSC is progressing to a fatal stage or may be leading toward a transplant. I never felt scared about my future because of my PSC before, but I am scared now. I am mostly scared to leave my son and husband (my hubby was recently diagnosed with Lymphoma at the young age of 28 - but is doing well). I am telling you this, because first I decided to take a stand and become more proactive in my health (that's how I found you guys) and in this process, but I will need some help from you. Some questions if anyone has any thouhts or experience with these:-I am taking 900MG's of Actigall. I weigh about 130. Should I be taking more?-Should I take any supplements?-Do you recommend any books dealing with PSC or there any? Especially in dealing with diet?I'm sure what I wrote is a bunch of babble, so I want to apologize for that, I have just been so consumed by this all lately and have so much on my mind that it just gets jumbled.I appreciate any advice or thoughts you have.In peace, Wilmingotn, NC

[Guest guest]

One thing we always suggest is making sure you have a good hepatologist that you trust. Many internists and even some gastroenterologists are not real familiar with this disease. One dr I spoke with told me that the only thing he knew about it was he remembered in school that it was always fatal. Obviously there are 1000 people here to say that is definitely not true. This disease waxes and wanes. There are people that get progressively sicker in a few years and others don't see much for 20+ years. Take care of yourself, be informed and be an advocate for yourself. Marti (living donor of 20 year old son 11 and 1/2 months ago)lovencbeaches wrote: Hey ya'll! I am new to the group and am so glad I found you all! My name is and have PSC/98 and UC/02. I had

been aysmptomatic for a long time but recently had some problems: pancreatitis which resulted in having my gall bladder out (2002), and last year I had my fist and only child, but it took a toll on my body. During my pregnancy my blood wasn't clotting well and I bled heavily after delivery ( I had to have 15 transfusions (7 red and 8 plasma). In Nov, I had an ERCP which revealed tiny varices in my esophogus and was put on blood pressure meds. I am worried that this is all a sign that my PSC is progressing to a fatal stage or may be leading toward a transplant. I never felt scared about my future because of my PSC before, but I am scared now. I am mostly scared to leave my son and husband (my hubby was recently diagnosed with Lymphoma at the young age of 28 - but is doing well). I am telling you this, because first I decided to take a stand and become more proactive in my health (that's how I

found you guys) and in this process, but I will need some help from you. Some questions if anyone has any thouhts or experience with these:-I am taking 900MG's of Actigall. I weigh about 130. Should I be taking more?-Should I take any supplements?-Do you recommend any books dealing with PSC or there any? Especially in dealing with diet?I'm sure what I wrote is a bunch of babble, so I want to apologize for that, I have just been so consumed by this all lately and have so much on my mind that it just gets jumbled.I appreciate any advice or thoughts you have.In peace, Wilmingotn, NC

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