UC Going on 12 years now PSC

Mike...

Let me tell you that I was meant to be on this site today. I originally got on to post about my recent PSC diagnoses & saw that you beat me to it! I met with a liver specialist on Tuesday who told me that I had PSC. I'm 28 & was just diagnosed with colitis this past November... so... it sounds like we're in very similar boats!

How has your mental state been with all this news? I have to tell you, I was an absolute wreck on Tuesday & has been progressively better through the support of my family & tons & tons of prayer. (Not to sound preachy...) I know exactly how you feel when it comes to your child. My husband & I have 2 boys (Donovan, 3 & Levi, 1) & all I keep thinking is that I'll probably never get to be a grandma. Upon speaking to my liver specialist, he said that almost all of his patients are in need of a liver transplant after 12 years of their diagnosis. That would put me at needing a liver at the age of 40. I'd then have about a 75% change of living until I'm 50. I was devastated at this news, & depression quickly set in worse than I've ever had it.

I spoke to my cousin who is a nurse on the transplant floor at one of the biggest hospitals in Pittsburgh. that made me feel SO much better. She's had many patients who have had a liver transplant before & get another if that one wears out (either due to them contracting Hepa*** again or drinking through their first transplant.) So... if those people are lucky enough to get 2 or 3 livers - I sure hope I can get one! She also told me that she's never heard of anyone dying while waiting for a liver to become available (which is one of my biggest fears.) I spoke with her for an hour & I felt like a huge weight had been lifted!

I have a couple of questions for you:
- Do you know which hospital in PA they're sending your biopsy results to?
- where are you from & how did you choose your doctor/hosptial?
- is your gastroentrologist your hepatologist too?
- Have you had an ERCP? (I had an MRCP & am supposed to be scheduled for an ERCP)
- did your doctor shed any light as to when you'd be looking at getting a transplant?

I'm looking forward to hearing back from you... I don't feel as alone in this as I first did!

Katina

PSC cannot be reversed....it can be halted possibly, or not triggered into an active state, however.


The thing with liver transplants....although awesome option, that new liver will eventually have PSC. q

please post it.
q

I assume that some testing had been done for them to presume PSC? Don't know but still might be interesting to the OP.

quincy said...
PSC cannot be reversed....it can be halted possibly, or not triggered into an active state, however.


The thing with liver transplants....although awesome option, that new liver will eventually have PSC. <BR><BR>q

I actually read somewhere that someone with PSC, had a liver transplant and their UC went away.
I am praying a transplant will not be needed.

Plus anything can happen in the next 10 years. They may find out the cause of UC and PSC.

dexthageek said...


I actually read somewhere that someone with PSC, had a liver transplant and their UC went away.I am praying a transplant will not be needed.

remission maybe. and the transplant will eventually have psc....again.

The trick, at this point, my STRONG belief is to leave invasive testing on the back burner unless there are severe strictures, then it will be treatment.

Keep your UC under control as best you can.....that includes rectal meds considering UC starts there...please use them...I beg you.

Nothing much has changed in 12 years since it was suspect that I had it except that the MRCP has come into being (thankfully) and doctors aren't jumping as quickly on the ERCP test initially (unless there's an emergency I guess)...and they don't really know which comes first, PSC or UC. So, that, in itself states autoimmune.

Take the URSO, make sure it's in the amount appropriate for your body weight.

Right, we don't know what change will happen in the future, but don't put all your hopes in the transplant. Deal with your UC and keep it under control.

Keep me informed as to how you're doing.

quincy

Hey, HI!!! ..hope all continues to be positive, but the URSO will lower your LFTs anyway, so you don't know for sure if it's the Lialda.

I don't believe the Lialda caused the PSC...but it could up the LFTs...but that was before you knew what else was going on..coincidence? You were on a high dosage, however.

Let us know how the c-scope goes.

How are your symptoms otherwise at this point?

I just had my MRCP and purchased the CD rom copy. It's definitely "there"...the beading, etc. I don't know what the report is exactly, but the GI's assistant called me (can't get in to see the GI till Sept) to say I might want to get my GP to see me regarding the suggestion of having an ERCP that it can get a head-start in the process.. I told her not to worry and I can wait to see the GI....I won't be having the ERCP so She did mention there's no change from the last MRCP according to the radiologist. I'm thankful for that, but will get the full info when I see the GI.

Thanks for the update!!!

q

I misunderstood regarding the inflammation part then.

Are you on 500mg URSO twice daily?

Another thing you might consider is milk thistle...cudn't hoit! I've added it again as of last month.

q