There's an eBook called Bits and pieces you might've missed about Primary sclerosing cholangitis, by J King, it does a lot of light, talks about the psychological element of it, of flaring it, of the cause, not the one coming from the disease putting us down. The idea is it can be tackled.
One thing people should know is that one cause of p s c is for patients that have ulcerative colitis and crohn's disease. Also start drinking coffee. It helps keep the disease from getting worse.
Hi! Thanks for posting a response. This disease impacts everyone differently. We always recommend that people speak with their doctor before changing or adding anything to your diet. You are definitely correct that the majority of people who have PSC also have an IBD. Researchers are working to discover the connection between these two diseases. You can find information about that research here on our UA-cam channel. Here is one discussion recorded at our most recent Conference. ua-cam.com/video/HNCOx-Cg0cU/v-deo.htmlsi=zA8rHF7UVL8mgwa1
I’m worried I’m starting with this. I had acute severe Colitis last year and was very unwell for 5 months Since then my bloods always come back with high bilirubin. They have told me I have Gilbert’s disease but I’m not too sure as it’s only since being unwell with my Colitis flare that I have had a liver issue with the blood results. Never had high bilirubin in my life until then.
I'm sorry for the delayed reply to this comment. I hope you have reached out in other ways. However, if you have not yet visited our website, please do. There are lots of resources on there. pscpartners.org/
@@PSCPartners I was never diagnosed with a digestive issue but have suffered with so many of the symptoms of an irritable bowel disease since I was young- I've been told its my redundant colon and my blood pressure meds most probably that caused my bathroom problems- and dr who diagnosed me told me psc was an autoimmune disease?
Me personally i got colitis after psc But for the industry this is not relevant coz They already know the healing and not tell it to make profit with Symptome treatment …
You need to see a liver specialist. Your liver health will be the indicator. I have really bad symptoms, but thankfully my liver is still in good shape, so don’t let the symptoms scare you about not being able to live long
Sorry for the delayed reply. I hope you have reached out in other ways. If you have not already viewed our website, it is a good place to go for education and available resources. pscpartners.org/ Feel free to also reach us at contactus@pscpartners.org
@daniyaemad4155 Update: After About 4-5 years i am still doing very good … i Never had any symptoms When I was diagnosed I was scared but now i accept it and dont care much. I take ursofalk and nor-urso My ultrasonic and mrcp results this year were normal (no healing but also no worsening… like its as same as it was 4-5 years ago ) My bloodwork is also normal .. but my ALP (alkali. Phosphate) is slighlty high
I just got diagnosed with Psc this gives me some hope
ayy I have PSC too had it since i was born
PSC-support (FB primary sclerosing cholangitis & transplant support) on Facebook will answer your questions.
There's an eBook called Bits and pieces you might've missed about Primary sclerosing cholangitis, by J King, it does a lot of light, talks about the psychological element of it, of flaring it, of the cause, not the one coming from the disease putting us down. The idea is it can be tackled.
Bonjour
A quel endroit puis-je trouver ce livre?
Same here.
I have PSC and chrons disease and I probably won't be living long. I just want to be there for my children' at least see them graduate.
How you doing
One thing people should know is that one cause of p s c is for patients that have ulcerative colitis and crohn's disease. Also start drinking coffee. It helps keep the disease from getting worse.
Hi! Thanks for posting a response. This disease impacts everyone differently. We always recommend that people speak with their doctor before changing or adding anything to your diet. You are definitely correct that the majority of people who have PSC also have an IBD. Researchers are working to discover the connection between these two diseases. You can find information about that research here on our UA-cam channel. Here is one discussion recorded at our most recent Conference. ua-cam.com/video/HNCOx-Cg0cU/v-deo.htmlsi=zA8rHF7UVL8mgwa1
I’m worried I’m starting with this. I had acute severe Colitis last year and was very unwell for 5 months Since then my bloods always come back with high bilirubin. They have told me I have Gilbert’s disease but I’m not too sure as it’s only since being unwell with my Colitis flare that I have had a liver issue with the blood results. Never had high bilirubin in my life until then.
I got Livertransplantation in July 2020, now the PSC came back and I can do it all over again.
I have just been diagnosed trying to find out what i can do!!!
I'm sorry for the delayed reply to this comment. I hope you have reached out in other ways. However, if you have not yet visited our website, please do. There are lots of resources on there. pscpartners.org/
Can I be a living donor to my brother?
I think it depends on the compatibility of your tissue with that of your brother or he's gonna reject the organ, you know😅
I have PSC
IBD can be a factor in developing PSC.
A large percentage of people with PSC also have IBD. The connection is something currently being studied by researchers.
@@PSCPartners I was never diagnosed with a digestive issue but have suffered with so many of the symptoms of an irritable bowel disease since I was young- I've been told its my redundant colon and my blood pressure meds most probably that caused my bathroom problems- and dr who diagnosed me told me psc was an autoimmune disease?
Me personally i got colitis after psc
But for the industry this is not relevant coz They already know the healing and not tell it to make profit with Symptome treatment …
Have all these people died or what? I've had it for 12 years I'm 24 now and starting to think
How are you doing?
How u doing
I have symptoms now already, itching, how many years left for me? Thank you for quick answers
You need to see a liver specialist. Your liver health will be the indicator.
I have really bad symptoms, but thankfully my liver is still in good shape, so don’t let the symptoms scare you about not being able to live long
Sorry for the delayed reply. I hope you have reached out in other ways. If you have not already viewed our website, it is a good place to go for education and available resources. pscpartners.org/ Feel free to also reach us at contactus@pscpartners.org
I am 19 and I have PSC
What can I do
Go to: PSC-support (FB primary sclerosing cholangitis & transplant support) on Facebook. It's the best support group & you'll get your answers.
I wish I was here for you 2 years ago... how are you doing?
how are you now
How are you now?Bless you
@daniyaemad4155 Update: After About 4-5 years i am still doing very good … i Never had any symptoms
When I was diagnosed I was scared but now i accept it and dont care much. I take ursofalk and nor-urso
My ultrasonic and mrcp results this year were normal (no healing but also no worsening… like its as same as it was 4-5 years ago )
My bloodwork is also normal .. but my ALP (alkali. Phosphate) is slighlty high