Small Duct PSC

[Data_Boy]

Hi,

I’m new here. Was diagnosed with small duct psc and IBD in January 2016. Has anyone else got this condition? For me the fatigue can be terrible at times. I spent most of Easter sleeping but sleep doesn’t relieve the tiredness. It’s really weird feeling. There’s some dizziness and brain fog too. IBD is under control with 2 mesazaline tablets per day. I also have episodes of eczema flare ups that I have never had before. Luckily I don’t have any major itching associated with PSC, just the eczema which steroid cream helps with. Also have developed tinnitus for no apparent reason. Literally I would have said I was healthy in 2015 and then everything went south. Had great care from the Royal Free though. Top hospital for Hepatology.

Any one else have the small duct psc?

[jojokarak]

Hi I haven't got the same condition as you but I am sure someone on here will .... But with all liver disease we all experience or experienced the fatigue somehow in time we just find our own ways to cope with it

Are you on transplant list or waiting to be assessed?

[Kristian]

Hi and welcome to the PSC club.

I'm not entirely sure that I can answer yes to your question as my diagnosis wasn't clear until after I had my liver transplant last year. The initial suspicions were that I had small duct PSC. Unfortunately, none of the tests, scans and biopsies done could ever prove it. They couldn't prove I had large duct PSC either. So the diagnosis was never confirmed and the cirrhosis was listed as being of unknown cause ("cryptogenic cirrhosis").

The pathology on the explanted liver finally confirmed my PSC diagnosis. So whether it was small duct PSC that transformed in to large duct PSC, which can happen, or whether it was large duct PSC all along I just don't know. Hence the reason I can't fully say yes to your question. I do know how it affects you though and what you describe sounds pretty familiar. With the exception of the eczema, I could tick all the other boxes. I too, fortunately, didn't have much itching and managed to escape significant cholangitis episodes.

I wouldn't suggest you take the course of my disease as reflective of what may occur with you. Small duct PSC is supposed to follow a more benign course than large duct PSC. That isn't going to stop you experiencing the symptoms though. Do you have any fibrosis yet? With your symptoms I suspect you might, but its worth discussing with your consultant next time you go if you are not sure.

Its interesting you mention you also have IBD too. There is a known association with that and PSC. I have recently discovered that I too have IBD. I have some form of colitis but not quite sure which yet.

Hope that helps. If you have any further queries feel free to ask.

Kristian

[Data_Boy]

Hi, I’m not on the transplant list. I’ve been told that the course of the disease is highly variable. I could deteriorate rapidly or I could have very little disease progression for the rest of my life and end up dying of something else. In the meantime it’s about managing symptoms. The ‘not knowing’ of how symptoms will develop is difficult.

My colitis sounds similar to yours Kristian. At first it was diagnosed as Chrons but then changed to inderterminate colitis as it wasn’t severe enough to chrons or uc. It is actually quite mild. The last colonoscopy didn’t really find any issues.

[Kristian in reply to Data_Boy]

It sounds like the advice you have been given is about right. Its good to have a diagnosis at least so you can do some research to know what you could expect, how to recognise it and what to do if it occurs. The difficulty of course is recognising if it is a symptom or not. Most times we are aware of acute illnesses because we feel worse than we normally do. With PSC, and liver disease in general, we tend to feel awful most of the time. We can therefore miss things others would normally notice. You'll go round answering the "how are you?" question with "oh, not too bad". Whereas in reality you are pretty unwell. You've just got acclimatised to being unwell all the time. It can be a bit of an insidious little sod in that respect.

Your IBD issue sounds familiar too. I had my first colonoscopy back in 2012 I think. That was pretty inconclusive, a bit of inflammation but nothing that would hint of any particular disease. It was only my last colonoscopy that showed moderately severe active colitis in the ascending colon and mild colitis in the transverse colon. So far its been listed as Indeterminate Colitis for the reason that it doesn't follow the usual pattern for either Crohns or UC. However, the biopsy results may prove otherwise. I understand that UC associated with PSC is atypical to normal UC in that it can affect the right side of the colon whereas traditional UC tends to affect the left (descending) side. So my betting is that it will end up as UC. Just waiting to see now.

Hopefully the course of your disease will not lead to a transplant. Although, i must admit I feel much better after mine :-). You'll just be monitored to see if anything changes over time or whether things like a drop in albumin or sodium or a rise in INR start to occur. Have you had an ultrasound to see if you have portal hypertension or to assess the size and texture of your liver? These are pretty standard monitoring practices.

In terms of what to expect, you'll probably find that you'll be able to do most of things you can do now for quite some time. They'll be harder to do but you should be able to keep doing them. Indeed, my advice would be to try and keep as fit as you can for as long as you can. Do the simple things like taking the stairs rather than the lift, plenty of walking or anything you enjoy doing. Keeping fit will stand you in good stead whatever the outcome.

[monicalynn]

hi I have ducts pancreatic ducts blocked with a stone for so long its caused damage to the duct and I also have ibs and I have had this issue for over 20 years. the extreme tiredness and fatigue are terrible I have mabey 2 to 3 hrs a day that I even have enough energy to get up and do anything and even during that time I yawn and heavy eyes still tired. I also have tinnitus in left ear so loud for over 2 years I think others around me are hearing it as well. the dizziness the headaches the confusion etc all suck terrible. I haven't fully been diagnosed yet as im still waiting for the gis to figure me out in full. but I did just find out that I now have a positive fit test which is for colon cancer or colon ulcers so now gi think it s my colon as well. the dr told me I had ibs over 25 years ago and I dealt with what I thought was just ibs pains etc but that ibs turned to polyps and diverticulitis causing infections. so be careful with colon now and I hope they sort us both out soon