Mark
Also bookmark this.
every time i sign onto this group I start itching. Whats that called pseudo itching.
I am not itching yet any other time. 
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JeffDC1.
Thanks Jeff. Happy to be back, well OK maybe that’s a lie, but happy to be around a group of caring people willing to expose themselves for the benefit of others.
And in possibly a few months/years time I couldn’t think of a better group to chat online.
So to make everyones day here is a ray of Kimberley sunset with a Boab Tree for good measure
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Hey there Gary from Australia,
I hate that you had to come back to group. I wish the dream run ran longer. We’re here though, and the guys gave great advice. Just wanted to check in and say someone in CA is sending you well wishes!!
Keep us posted, take care,
Gaz,
Thanks for the beautiful sun set you posted. I have a friend that is here in the States for a few years that is from Australia. He asked me if that photo was taken at Kunnunnara? Thanks.
Mark
Mark
Wow yes you friend must have either lived there or stayed in the caravan park nearby to recognise this, as this is Lilly Creek or actually Lake Kununurra. Thats actually my view (taken from back yard) each and every night from my house that I rent so now you see the reason why i took on a job so far away from my hepto.
Hi GazfromAus,
Just curious you mentioned you took a new job which can be quite stressful. Did you experience any stress? I took a new job at the beginning of this year after 9 years in my previous role, and it was quite stressful, coinicidently my small duct psc which I have had for at least 4 years progressed to normal psc over the same period and now my blood tests are all over the place with suspected AIH overlap
Hi Rick.
Ummn is my job stressful. Well I went from a full on job doing about 12 hr days to another full on job doing maybe 10hrs days but pretty much on call the rest of the time. So I love my job and I do get some fantastic down time but yes there is components where there is stress.
Do I think stress plays a part. Well I believe stress caused me to have my UC after a particularly stressful event at work which coincided with a financial stress at home.That I would stake my house on.
But this time I don’t know. Waiting to see the Hepto Monday week. What is different was about 3 months ago I had a shallow blood clot in my calf that didn’t quiet make it to be a DVT and they put me on blood thinners. I will ask if that could of played a part.
What I do know is that what will be will be.
Hi GazfromAus,
Well I seemed to develop my symptoms after going through some particularly bad PTSD regarding childhood trauma when I was about 40. I’m now 45. I developed Chron’s and small duct psc practically overnight. Things then settled Down for a few years until the stressful job change and then I developed strictures all over the liver. I don’t think there is any documented evidence of a link but who knows!
Update: Well made the trip south to see the good Heptologist and have the MRCP.
The MRCP showed very little progression in the large ducts however my pain in the liver and my bloods still indicate a cholangitis attack.
the Specialist stated that I might have small duct PSC as well thus why there is a blockage. He then extended my antibiotics for a further 6 weeks.
Interestingly when I told him I was on a ongoing small dose of metronidazole for my “pouchitis” he looked really stumped. He stated that that antibiotic used to be used as treatment for cholangitis and thus I shouldn’t have really got an infection.
He has requested I go the 6 weeks on the stronger antibotic’s and if the pain and the bloods dont improve they may need to do more testing and/or a biopsy.
he did take a heap of blood for a variety of weird tropical diseases since of where I live so will also await those.
So while I was hoping for that definitive piece of news, no joy, just hurry up and wait.
Gaz, I hope he is right and you have a pain-free, or less pain, during the next 6 weeks.
Jeff
Hey all.
Well after my last post I was waiting for some blood tests. Well good old mother nature decided, why get the results over the phone I will give you a few other things to think about and to help you can also take a 3200km low altitude flight on the Royal Flying Doctor service plane on Christmas Day. (In Australia we have a air service type ambulance for people in remote places).
So what did mother nature thrown my way:
Well on 22 December I woke in the middle of the night thinking my wife had enough of my snoring and had actually stabbed me in the back with a knife. (She was actually visiting our daughters some 3200km away by the way before anybody calls the cops). So after driving myself to hospital I was diagnosed with double blood clots in each lung and also pneumonia. Well if that wasn’t so bad two days later my bowel blocked and thus the emergency flight to perth for surgery on Xmas day.
Turned out the blockage (twist) cleared 4 days latter so lucky for me no surgery.
So I am now down in the big smoke so I might as well see the Hepatologist and see the verdict on those blood tests. Well congratulations Gaz, in addition to your PSC you now also have Autoimmune Hepatitis, which explained the ascending cholangitis attack in November.
Anyway all’s good just flew home today. No surgery, no long term damage and a greater appreciation to look after my body and hydrate. As this was my third dvt/PE event I am now on permanent blood thinners. I put this down to not having a colon and not being able to hydrate.
The one question I have for the group is does having Autoimmune hepatitis speed up or complicate having PSC or is it common having both conditions.
My hepatologits is not treating me for the hepatitis side of things yet.
Anyway hope everyone had a great Xmas.
Jeff saw your last post hope the new pain is sorted soon.
Keep punching all. Having love, laughter and an active lifestyle (including work) is what drives me to keep punching.
Hey Gaz,
My husband just got diagnosed with autoimmune hepatitis and PSC after having UC for 10 years (colon still in tack). I can’t really speak to whether the hepatitis complicates the PSC as it’s so new to us, but the hepatitis is treatable (unlike PSC) with drugs that are similar to how they treat colitis. If your numbers are still high for liver, they’ll probably put you on steroids.
The one thing I’m noticing here, which is super common for most people on this forum, is all the overlapping diagnoses that are autoimmune things. Once you have one autoimmune thing, you’re much more likely to develop another. So even though all these things are different, they’re related. Not causing each other, just related.
One of the things you can do is trying to find foods that limit inflammation. Figuring out diet is NOT a replacement for treatment, but can be used to support your body so it better fights these things. We just started the AIP diet to try to figure out what’s bothering my husband. This may be hard with your lack of colon as what you can digest is limited (I would assume). There still may be a way to experiment by removing things from diet (elimination) and reintroducing them to see if they cause issues. Bloodwork might be helpful here, but also symptomology. Gluten, diary, and sugar are some of the big things people find bother them. Maybe a functional MD or nutritionist could help you here.
Gaz, those were some Christmas presents you did not need. Glad you made it through that rough patch. On some days, it is hard to keep things together, but it makes you appreciate the good days. I hope you get there soon.
Hey Jordanah.
thanks for the response. Like your husband I had UC (treated for crohns) and coeliac before being diagnosed with PSC. I was hoping 3 autoimmune types were enough but obviously not so Auto hepatitis makes that 4.
I have tried playing with my diet but with the colon removed my surgeon encourages me not to have fibre and to quote him. Fibre is tohelp the bowels operate well you don’t have one so fibre is just more likely to stick to the walls of the scar tissue and cause you issues.
Thus its a delimea do i each small amounts of health green with more soluable fibre than insoluble or do i go protein which aggravates the liver. Thus I just eat what i think right on a day today basis depending on what my body tells me, and of late the has been a few bits of xmas chocolate in there as well which probably isn’t the best, but hey its xmas.
Thanks also for the AIP link. I pretty much follow this except the dairy, which i swapped to lactose free but after ready this may just try and stop too.
hope your hubbies journey is not to long or hard and stay strong yourself a without my gorgeous strong wife i don’t know where I would be at present.
Thanks for the advice and good luck.
That’s great Gary. I just wanted to mention the food thing in case it was something you hadn’t explored. Everyone has different needs and things they have to balance, so there’s no one right way to do all this stuff. Hope you heal up and are doing well.