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Primary Sclerosing Cholangitis (PSC) - Online Support Group

My thoughts after being diagnosed in 2018

Hi there,

I’m new to the forum and I wanted to share a little bit of my story and thoughts about PSC after being diagnosed in September last year. I’m 27, male.

Before last year, I didn’t have any symptoms of PSC or Crohns (which i have now as well…) so it came as quite a shock to me. Started having a fairly severe all-body itching in June last year which culminated in 1-2 weeks of something similar to colitis, and being admitted to hospital in september with cholestatic jaundice. They thought it was gall stones at first but then after lots of blood tests and an MRCP it turned out to be PSC (beading / stricturing of intra and extra hepatic ducts & common bile duct)

When i got the diagnosis I was given a fairly low dose of URSO and discharged from the hospital. My Jaundice went away after about 2-3 weeks and bilirubin was back to normal by December. Some recent results:

ALP: 350 U/L (minimum this year was 200)
ALT: 85 U/L
Bil: 14 U/L (Normal: 0 - 20 U/L)
GGT: 150 U/L
Fibroscan: 7.1KPa

Basically I feel fine now, except for occasional mild itching and occasional pains in lower abdomen from Crohns. So i consider myself very lucky as I did not think this would be the case when diagnosed.

I’ve noticed that for me, my trigger for the cholestasis was dehydration coupled with eating too much chocolate/ high fat foods and generally a terrible diet. I have really found that drinking lots of water every day has helped to prevent a recurrence of symptoms. This makes sense really considering that the water will help dilute the bile in the liver.

I have also cut out Coffee because i noticed i was getting symptoms of itching and intestinal pain generally after drinking lots of coffee. I’ve reduced high fibre foods to prevent pains due to crohns, which has worked (Before I ate bran flakes for breakfast and by evening I would be in pain. Now i eat cornflakes and I no longer have the same problem)

So slowly but surely I’m realising there’s things I can do to improve my situation to the point where now I feel 99% normal. I’m feeling quite optimistic at the moment and I generally don’t think about it too much, but that’s understandable since I am doing quite well right now.

I kind of wish I did medicine now instead of engineering, since I feel like there’s an opportunity to figure out the solution for PSC. My research has made me believe it has something to do with cholesterol, or something else in the bile which is causing this reaction. Whatever that something is, I believe it originates in the gut and is transferred to the liver, hence the connection with crohns / UC.

Anyway hope everyone is doing okay and I look forward to contributing to forum, all the best.

1 Like

Andy,
Thanks for your post and I’m glad your PSC and crohns are under control. I wish you many more years with minimal symptoms from your PSC. If you ever have any questions or needs don’t hesitate to give a shout out. We are here for you and also welcome your contribution to the community.

Mark
PSC 2011 / Liver Transplant 2015