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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Diagnosed with PSC


#1

Diagnosed 12 years ago. In the lasr two months I've lost 15 pounds. My bilirubin is 11. Alk Phos is 728. Have nausea, fatigue, some internal bleeding. Very weak, I might add.


#2

I’m sorry hear that.
What is your Dr. Saying?
Sending well wishes.
AJ


#3

I encourage you to keep talking to the group. Find support here. Ask questions. Get empathy. Don’t be alone in this rough road.


#4

Dr. Says one to two years on average.


#5

II


#6

I'm looking for nutritional ideas that digest well with psc


#7

I just started reading the Paleo Approach by Sarah Ballantyne. Check it out. It addresses autoimmune diseases and how diet and lifestyle can help to heal or at least make your disease progress more slowly and make you feel better. PSC is an autoimmune disease.

Also search this forum for nutritional advice. There are some great tips there.


#8

Also, don’t lose hope!


#9

Yes. Seeing Gastro Dr. It is verises.


#10

Dear Foxy,
Weight loss is very common in PSC patients as the disease progresses. I lost 60+ pounds before my transplant. I now weigh 129 and i used to be 185!
The internal bleeding worries me. I had to have varicies (dilated blood vessels in the esophagus tied off twice. There is the potential for these to bleed massively! Talk to your Dr. about this if you haven’t had these tied off.