I noticed a lot of people writing here that they have PSC. My liver values rocketed when I got really ill with UC last summer ("completely crazy" as the surgeon called them), then they subsided a bit and went sky high again after my ileo surgery while I had an ostomy and repeated courses of antibiotics. I felt like I was dying, but then it appeared I was as all my blood tests were completely dire (had a blood transfusion, litres of fluids, magnesium, iron, blah bla). I assumed everything would calm down when I got better, but got called in for an ultrasound as they reackoned my bile ducts had narrowed (my gallbladder was removed in 2000). But when they did the ultrasound, it turned out what they were actually screening for was PSC!! I got such a shock. Freaked me out as I´d read about it on the net and had been told by hubby not to expect the worst all the time...! Well, I got the all clear now, with a new check scheduled in 6 months. But what does this all mean? Have I then got PSC which had just died down? Or did my liver values go AWOL because I was so ill? I asked if I had to cut out all alcohol (I hardly drink much as it is, especially as alcohol makes my BMs too loose), but he said I didn´t have to. I´m confused as to how seriously I should take this.

No, you do not get PSC and have it just go away. If that was your diagnosis, it would be life long. An ultrasound is not a very good screening tool for PSC and even if it was negative, I'd ask for an MRCP. This is like an ERCP, in that it specifically focuses on the ducts, but it is non-invasive, so there is no risk. It is an MRI of the bile and pancreatic ducts. I had only mildly elevated liver enzymes over a prolonged period and had the full work up with a full liver function panel, hepatitis screen, and abdominal CT. When these were negative, they also did the MRCP. My diagnosis was probable non-alcoholic fatty liver disease.

So, I avoid Tylenol and alcohol (just the very occasional drink).

Your liver function studies can go completely haywire for any number of things, including your illness and the drugs you were on. If every serious cause is ruled out, then I think you can relax. However, understand that autoimmune hepatitis is associated with UC, so it bears watching and you should still have periodic liver function tests to keep an eye on it. PSC can also manifest decades after colectomy, so with your history, it just makes sense to keep watch.

Other than that, just live your life.

Jan

Hi Jan, Thanks for your reply :0). I had an MRI of my bile duct (and pancreatic ducts, I think) and that´s where they discovered a narrowing of the ducts...I think! Jeez, here you have to have ears like a bloodhound and a fair amount of medical insight and interest to glean anything from the doctors´ mumblings. Information is not offered readily. During the ultrasound the doctors were talking in latin terms and oohing and aahing over their new u-s equipment, and then said everythig looked fine so "see you in 6 months". So I have no idea if I´ve been diagnosed or not, to be honest.

I think I would get copies of the records...decifer at your leisure. My MRCP was negative, however my ERCP did indeed show PSC.My liver enzymes have been with in normal limits. I have been taking milk thistle for liver support. My GI did not expect(crystal ball maybe?) trouble with the liver for another 10 years. LoriP

Hi LoriP, I was thinking about Milk Thistle having seen postings about it. I´ll definitely look into it. Thanks for all the advice. I´ve had far more help from this site than from any doctor I´ve been to.

Soph,

I agree fully with what Jan mentioned earlier. An ultrasound is not the best diagnostic for PSC. The gold standard is an ERCP, but the MRCP is gaining popularity as it is becoming more reliable and it is not invasive.

It may be worth mentioning that you'd like the MRCP in place of the ultrasound for the repeat test. If that comes back clear, then I would consider that a more reliable "negative."

Good luck to you.

Rick

Kaboom- my mrcp was negative....ERCP showed the psc. I guess it depends on how advanced the disease is....the ercp showed it earlier stages.tests were done weeks apart. LoriP

Lori,

That is why the ERCP is still the "gold standard" for detecting PSC. I hope that the MRCP eventually will be as good diagnostically as the ERCP - but even then a dilation or stent couldn't be done with an MRCP. I suggested an MRCP for Soph because she mentioned that her bloodwork has leveled off and I don't see the point of putting her through an ERCP (which can be awful, by the way!) if there isn't a lot of evidence of PSC. I'm not sure what the exact difference is between ERCP and MRCP diagnostically but I have read that the MRCP is reliable for diagnostics.

I sure do hope that major advances are made very soon with PSC. I'm in a double blind clinical trial for high dose urso right now. I'm thinking that I'm on the urso and not a placebo because my blood results have seen substantial improvements over the last 6 months. Hopefully this study will prove that high doses of Urso can be taken as a maintenance drug to keep PSC from progressing, but we won't know for awhile yet.

Rick