I’m in the UK and have Primary Sclerosing Cholangitus, what can I expect?

November 9, 2009 5:51 AM

I’m in the UK and have Primary Sclerosing Cholangitus, what can I expect?

On Friday I was diagnosed as having Primary Sclerosing Cholangitus. I have used my Google-fu and found information relating to symptoms (itching, upper-right quadrant pain and so on) but no where I can find describe what that exactly is. Is the itching just normal? What type of pain?

Also, I was trying to get some personal stories from people to tell me that my life isn’t over now or in 10 or so years when I need a transplant.

posted by Nufkin to Health & Fitness (5 answers total)

Best answer: No personal experience of the disease but lots of experience in the NHS.

I find in the UK that the expert patient groups are frequently a fantastic sort of information & help. They are remarkably free of the "I heard if I went to Mexico & eat cactus fruit for 6 months.... " type stories I've seen in other health fora.

NHS advice: You have a chronic condition that can have acute exacerbations so you're going to need to build up the relationship with your GP & hospital consultant, as they will be helping you control symptoms & regularly check bloods. You've just had the diagnosis so you'll be in a bit of shock, but do make another appointment to go back to the clinic with all the questions you've put together from trawling the expert patient sites. The likelyhood is that this last appointment was with a consultant to break the bad news. The next one is far more likely to be with his/her Registrar. That in itself may be no bad thing, as I know some Registrars who are brilliant at getting up to speed with the clinic, but remember that they do probably 6 months to 12 months with this particular part of the specialty whereas the consultant is really the expert.

So if you feel the Reg can't address your queries, very politley ask to see the consultant, even if that means staying until the end of the clinic.

Going by the numbers it may be that your GP has only ever seen this once or twice, so don't be afraid to print off some basic info to stick in your file, particularly since anyone on nights or weekends is almost certainly a locum. Again the GP will prescribe the anti-purectics & pain meds on the NHS approved list. They may not suit you. Very politely ask to be put on an alternative or take it back to clinic to discuss.

Your hospital consultant these days will almost certainly copy you into the correspondance he sends your GP. If he/she is part of the old school though, again ask at the next clinic that you be copied in and keep all the blood results, meds info, and letters in a file>

best of luck, I hope your symptoms are mild.
posted by Wilder at 6:28 AM on November 9, 2009

Response by poster: Thank you, Wilder. I have indeterminate coitus as well, so I have good connections with my existing specialists and GP. I will look into the patient groups.
posted by Nufkin at 6:37 AM on November 9, 2009 [2 favorites]

I think you meant indeterminate colitis, probably?
posted by vytae at 8:47 AM on November 9, 2009

Response by poster: Yes. yes I did.
posted by Nufkin at 9:04 AM on November 9, 2009

"Indeterminate coitus" is the best typo ever typoed.

Another resource is PSC Literature.org.

Sorry to hear about your chronic illness, but it must be a relief to know it's not something more life-threatening.
posted by Sidhedevil at 11:21 AM on November 9, 2009