I’m a 68 yr old Kiwi male who was diagnosed with Crohns in late 2015 a few months after a trip to USA. At first I was tested for parasites and tested positive for two including blastocystis. I was put on a 2/3rds course of flagyl(?) and after further testing was given the full dose. Although things settled for a while I was eventually sent for a colonoscopy with a diagnosis of Crohns - which they think was what I had all along. I wasn’t entirely convinced and asked if the flagyl upset my gut equilibrium enough for Crohns to kick in. I was told no - yet there was a definite difference between my stools and smells before and after taking the flagyl.
A 7 week reducing course of Prednisone followed the Crohns diagnosis along with Penatsa and things were pretty settled. I was lucky I was in the “hospital system” so have been seeing their gastro specialists all along.
In 2017 I had a brief episode of mild jaundice. A blood test prompted an MRI which revealed very early stage PSC. “Dr Google” was neither helpful or comforting! A prognosis of 7 years was mentioned. However, the PSC specialist at Christchurch Hospital reckoned with my getting it later in life, it would be more like 14 years before it would be an issue. I said to him that 14 years would put me over 80 and that its quite likely other crap would be happening! LOL
I assumed there would be no likelihood of a transplant - confirmed at a later appointment by yet another hospital specialist. So - my PSC is either something which can be managed or even cured with future advances or…
Azathioprine was added to my medications as my last colonoscopy showed I’m still inflamed. I also had 5 polyps removed after having none originally in 2015. The biopsies were clear.
In comparison with what I’m reading in this forum, I’m currently getting off lightly. The Crohns is almost no bother but I don’t like having to take the immunosuppressant.
As for the PSC - I’ve followed their advice. i.e 5 units a week max of alcohol. By unit I mean a small glass of wine or a stubby of beer. I limit bacon/sausages etc. So far my searching on the net suggests just following a healthy diet. However, I should look at lowering the work the liver has to do even more. I note ammonia processing is mentioned and, sadly, a lot of my favourite foods listed as a source.
It appears Crohns and PSC tend to hit people much younger than I so, if a transplant is out, I guess I’m pretty easy in taking whatever the cards (and science) deal from now on. I see nor-urso being mentioned overseas as a possible cure. I note stents being used to keep ducts open along with balloons - and a preference for the latter in forums. I guess my first ERCP will be the marker.
Dr Google is proving to be a bit more helpful now - especially after discovering this forum and similar ones on FaceBook.
That’s all from a “Downunder Newbie”!