Sclerosing Cholangitis

[Oscar56]

Hi

I have just been diagnosed with psc, is there anybody with this and can anybody give me any advice about living with it, just found out with and MRI Scan

[AyrshireK]

Can't offer personal experience of this condition but can point you in the direction of the British Liver Trust page about PSC @ britishlivertrust.org.uk/li...

All the best, Katie

[bantam12]

There is a psc forum which is very helpful.

[Oscar56 in reply to bantam12]

Ok how can i get to the forum, thanks for the help in pointing in the right direction, all i know is i have narrowing of bile ducts within my liver, im under liver consultant and got to have colonoscopy to see if i also have a bowel problem that has caused the liver diesease

[bantam12 in reply to Oscar56]

pscsupport.org.uk/

[scampi2122]

Morning, I too have psc diagnosed from an MRI then MRCP. I have another MRCP which has just come thru for April, I suppose it is to check how things are going. I have been taking Urso for about 5 months now. I signed up to a study at UK-PSC Study - enquiry via PSC Support, so my medical records are shared with them.

Other than that I don't know a great deal, (I don't think the medics know enough yet, but they know more than me). I presume the Urso should ease the narrowing of bile ducts, but I just take it and go for whatever tests they suggest!

[Identity75]

Hiya. I have/had PSC and UC, now transplanted. It can affect everyone differently. I didn’t present any PSC symptoms for as long as I had it till my liver started to fail and I needed the transplant. PSC Support are great. You can find them on Facebook to. Any Q’s feel free to ask.

[Oscar56 in reply to Identity75]

Hi, im absolutely petrified to the point im crying and have constant headaches, i have psc only with the bile ducts inside my liver, i have had abnormal liver functions for years and constant itching and quite fatigued, but i also have copd, how long was it from diagnosis to transplant? Im in a mess at the moment, he wants me to have a colonoscopy to see if i have a secondary condition.

[Identity75 in reply to Oscar56]

It’s not surprising how you’re feeling, just don’t bottle it up and talk to people about it, let your medical team know how you are feeling.

I was diagnosed with Ulcerative Colitis and PSC in 2003, the two are often found together, as I said the PSC didn’t really cause any issues, I went through some stages of itching. In 2016 I became very jaundiced, tests ensued and it was decided that my PSC had progressed to the stage of needing a transplant. After testing for suitability I was put on the waiting list and was transplanted in December 2017.

Colonoscopy can be quite scary, but it’s nothing to really worry about. The procedure itself once you over come the embarrassing situation is relatively painless, slightly uncomfortable. The more unpleasant part is the bowel prep drink you have to have the day before to clear you out. The taste is by no means nice.

I’ve found the best way to do it is make it up in advance using a large amount of orange cordial over just water and then chill in the fridge. If you then drink it using a straw trying to avoid the majority of your taste buds it’s somewhat bearable.

If you think of anything else you want to ask, nothing is off limits. Feel free to ask on here or DM if private.

[Oscar56]

Thank you for this, that has helped alot, i just keep thinking im going to die, as i now have two progressive dieseases, i dont have appointment with my liver consultant untill 10th april, do you have to have regular scans etc to check on progression?

[Kristian]

Hi Oscar, Welcome to the PSC club.

I was formally diagnosed with PSC when they did the biopsies on my old liver after transplant. Up until that point my diagnosis wasn't clear. PSC was one of the suspected causes but was never proven until after the transplant. Time wise from first suspicions to transplant for me was about 8/9 years. However, progression of the disease is very variable and I understand that 15 - 20 years is becoming more of a stated average now. I'm sure as more research is done those figures will become much clearer and also longer. There is now also lots more research going on in to PSC, so try not to be quite so down hearted. Although, I appreciate that may not be quite so easy.

Scans wise, you will probably have fairly regular ultrasounds and MRCPs. The frequency may vary depending on your test results. In the early stages without cirrhosis they'll probably be every 1 and 2 years respectively, but that isn't a hard and fast rule. As the disease progresses and should cirrhosis develop then the frequency of those scans will increase. Usually Ultrasounds every 6 months. Come to expect colonoscopies too, as Identity75 says, there is quite a high proportion of PSC patients with some other Inflammatory Bowel Disease, so they'll want to check for this so they can treat if necessary. If the colonoscopy is clear then they may not need to go back for a couple of years. If there is signs of some IBD then you may have that delight annually. Its all in your best interest though, and it is fun to watch. Not exactly Bohemian Rhapsody, but it is interesting to see what you look like on the inside.

ID75 has already set out some good points on the colonoscopy side of things and i'd echo those. The worst bit really is the prep. But, if you experiment you can sort out a recipe for the mix that will make it a little more palatable. My recipe uses carbonated water and fizzy orange, but yeah, keep it chilled and drink through a straw are good tips.

The key thing really is to ensure that you are regularly monitored so that any changes in your results can be picked up. Try and keep note of your symptoms too as these can be useful indicators for the doctors to indicate when to do further investigations (such as scans) or whether they need to change or add to your meds. It will also help them to decide when it may be necessary to consider referral to a more specialist transplant centre. I'm not sure where you are based, but in the UK there are protocols set out that advise on appropriate levels of management for PSC and liver disease. You may find in the early stages your clinics at a hospital could be annually, as things develop they will become more frequent, usually 6 monthly or even 3 monthly.

Hope that's a little helpful. I appreciate it is a bit daunting at this stage. However, try not to think everything is as bad as it sounds. Even if you do need a transplant, life afterwards is usually good and long term survival rates for those transplanted for PSC are high. Ok, lots of things can happen with this disease, but that isn't to say they actually will.

Good luck and by all means keep in touch and ask whatever questions you like. Also do look up the facebook group. We're a friendly, if not a little crazy, bunch. I think its under PSC Support UK if you do a search, or try the link below if it works:

facebook.com/groups/pscsupp...

Kristian

[Identity75 in reply to Kristian]

Kristian,

Have you ever tried making your bowel prep up with gelatine and then eating it??? I heard somebody else somewhere mention it and I’ve always fancied trying it but as yet haven’t. Don’t want to risk the prep not working but I don’t see any logical reason why it wouldn’t and it strikes me as an easy way to get it inside you.

Any thoughts?

[Kristian in reply to Identity75]

I saw that too, mix it with orange jelly or something like that. I did think about but then decided it was too much effort, lol. I am a bit of a lazy sod though. I used to just use carbonated water to mix it which was better than still water. However, the addition of the fizzy orange last time did make it even more palatable. I'd definitely recommend doing that to anyone. I think the carbonation just make it a bit more refreshing and less "gloopy" tasting, lol.

[Hidden]

Hi

Hope you are all as well as can be. Last time I had the prep, u found the easiest way was to drink it quite quickly but the prep did not fully work so consultant couldn't see everything! He did say that he thought I didn't need another one , he is quite blasé though!! Love and hugs Lynne xxxx

[Oscar56]

Hi, does anyone know if psc in the small ducts can move to the large ducts, i only have psc in the small ducts in my liver, my prognosis is not so bad at mo as its only in the ones in my liver, just waiting for colonoscopy to see if i have ibd too or ulcertive colitis

[Nicklovestowork]

Hi.. I am patient with elevated GGT to 106 and with vitamin D deficiency, rest of the liver test report were normal from past couples of years I am having a digestion problem with bile also suffering with hiatus hernia. Apparently, my concerned is this symptoms may indicate to PSC disease. Kindly advise further

😔