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Downunder Newbie


#1

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”!


#2

Hi Johnonz
You’re fortunate enough to not have this terrible disease in your young age.
Many of us would like to live as much as you.
Be optimistic about future.
God bless you.


#3

John,
Hello and welcome to this PSC forum. I’m not sure about the rules in Australia, but here in the States you are certainly not too young for a liver transplant. 68 is not that old my friend so don’t give up all hope yet. If I were you I would look into all your options. See what the rules are in New Zealand as well since you stated you are from there at least based on the term Kiwi you used from my research. I wasn’t aware of the term although what I read is that it’s a very endearing term to use to those from that country.
If we are able to help you with additional information through this journey please don’t hesitate to post any thoughts or questions you might have. I will encourage you to discontinue all use of alcohol in any form. Your liver is already very sick from the PSC and will continue to progress over time leading eventually to stage 4 cirrhosis near the end. Alcohol intake just accelerates that process so please stop drinking to give yourself all the time possible. But do investigate the transplant process. We are here for you so please don’t hesitate to reach out anytime.

Mark
PSC 2011 / Liver Transplant 2015


#4

Hi Johnonz.

Your diagnoses with Crohns sounds similiar to mine. I was also originally diagnosed with giardia and did a course of flagyl. Long time ago. lol Finally got a colonoscopy though, and cleared it all up. That UC/Crohns hasn’t been a very big deal to me either.

It sure seems to me that there may be some treatments coming for PSC? I think there is reason to be hopeful. I also think there could be quite a bit of time for you before the PSC becomes a big issue. Also, like you, in comparison to what I have read online, I have had smooth sailing. Things are getting more serious for me lately, but such is life.

Hang in there, man. Take as good of care of yourself as you can, and keep moving forward!

Doug


#5

John.

Welcome ANZAC (Mark google that as its an endearing term for Kiwi’s (New Zealanders) and us Aussies combined.

Although 18yrs younger than yourself my story is similar. Look through my past threads.

Anyway just so you know they treated me for nearly three years with all sorts of nab ending drugs, some in black bags delivered in the chemo suit of hospitals. Turns out I didn’t have crohns just Ulcerative colitis (UC). Basically the same symptons and cause except one is restricted to the inside of the colon (UC) and the other can be inside or outside of the intestinal tract (lips to rectum). I had my entire colon removed and thought I was fixed but then PSC was on the radar.

Anyway it must be a down under thing with the doc’s as I got told only one standard drink on any day but preferably not every day. In essence as you described they say ease up on the drinks and food that the liver doesn’t like, to prevent it havnt to work harder than necessary. But as you can see from this forum in the good old USofA its zero for alcohol.

In my research over here I have not found an age limit on transplants, rather general ability to handle the surgery, but did find that if I wanted a live donor transplant then I must take my donor to NZ as Australia doesn’t do them. Interesting. But I took this forum’s and Mark in particular, advice and saw a hepatologist. My guy is linked to the States only transplant unit and he basically said my state (Western Australia) only does 20-25 transplants a year but basically everybody that needs ones get an opportunity to get one and their survival rate was one of the highest in Australia and the western world, which was good to hear.

I have had PSC for 3 years so far and it (touch wood) appears to be slow moving so hopefully I will be like some on these pages and live long and not have any issues. But what I do take from these pages is another message and that is live life to the fullest, dont say no to memories with family, mates and those people you dont even know yet and when PSC comes a knocking, me and it will go a rocking.

Good luck

Gaz


#6

Thanks from “across the ditch” as they say!
I’ve found info on the NZ- AUS liver transplant scene plus a research paper on the alcohol issue. I’ll post them later. Suffice to say, based on the demographics of the transplants so far, my chances of getting one when my liver packs up are beyond remote. Only 5 people post 70 and I would likely be 75ish or more. Realistically it isn’t going to happen! Besides, with the limited number of donors in NZ, you would have to accept that younger potential recipients should be leading the queue. I’m happy with that.


#7

Thanks for invoking His blessings. I hope He is with you on your journey as well.

I did a bit of searching online about the health system in Iran. It would seem you have a degree of user pays which would be hard if health insurance wasn’t available. I don’t know how that affects you though.

It seems as though there are very good medical universities in Iran but that at least some of the graduates end up in overseas hospitals. However, there were still plenty of online references to work being done on PSC in Iran. I hope funding for that has been easier to obtain now.

Best wishes - and thanks again for the welcome.


#8

Thanks Doug! Not sure how my PSC will progress. One of the things I want to find out at my next “hep” appointment is whether there are markers, tests etc that will help with that. It would help with big family decisions such as house downsizing etc to know a little more.
Cheers
John


#9

Thanks for the welcome Mark. A, hopefully, long journey ahead! Looking after my liver will be part of the battle. I could probably survive without wine but hopefully I will get some more guidance on that as the hep guys ascertain my progress. I’ve found a research paper that concludes some alcohol is ok and may even be beneficial - but, while that may have worked for their sample, it may not work for me. So I may well have to give up - and I have to say the pic of your old liver presented a compelling argument!

Cheers
John


#10

Thanks Johnonz
In Iran we have very good transplant hospital with high rate of success. Such as “Namazi hospital” in shiraz.
Good luck.


#11

Hi John, I’m also a kiwi but have been abroad for 20 years. Am returning home in a couple of months to live in Auckland or New Zealand. Do you know whether urso or vancomycin is prescribed in NZ and whether or not it is subsidised? Will try to get assessed at the Liver Unit in Auckland but it might take a while to get back into the system.


#12

Hi Emma,

I can’t answer myself so have asked the “PSC Kiwi Support” group in FaceBook for help. I’m only on the basic drugs for my Crohns with my PSC very much in the early stages. Will get back to you. There are 63 members in that closed group with Ross Hannah as an admin. I’d recommend joining that group if you return.

Cheers,

John


#13

Hi Emma,

I’ve had one reply from the group which indicated he had been prescribed urso and he referred my to the MedSafe.govt.nz website for info on vanco. Vanco is listed as being a prescription only drug but I’m unsure whether that means basically free under Pharmac or not. He said he had to get his urso from the hospital pharmacy as it isn’t a normal stock item in NZ pharmacies.

I’ll let you know anything further to clarify this.

Cheers

John


#14

Very helpful, thanks John!


#15

I’ll join that group now. Thanks so much.