I also was diagnosed with PSC before j-pouch surgery.  I did not have biopsy  

After surgery my enzymes went down but PSC doesn't go away.  When I go to see my gastro in the city someone from PSC foundation always comes in the room to try and take blood for studies of PSC but unfortunately they can never get my vein.  When I do go for blood work they always check my enzyme levels and they have been pretty good.

Thanks, Grace

Good to hear that I am not alone in this. Have you concerns about having PSC? Do you know where I can get more information about it? I am having my ileostomy reversed on the 31st and I am apprehensive about that too. Did you have good luck with the jpouch after surgery? Thanks again, Judy K

I was diagnosed with PSC pre-takedown and was told that the odds of any complications I.e. Pouchitis, cuffitis etc are basically doubled for PSCer's.  i am 8 weeks post takedown and the pouch is doing well but I have developed cuffitis.  There is lots of good information the PSC Partners seeking a Cure website.

Thank you so much for getting back to me. It's good to know that there are others going through similar experiences. I guess I also need to do some homework about the other possibilities such as pouchitis and cuffitis. Scheduled for my takedown on Tuesday of next week and I am having a lot of anxiety not knowing what that will be like afterwards. Hope you get cleared up quickly and that life with the jpouch will be trouble free for you! Thanks again, Judy K

I was just diagnosed with PSC after having my j pouch since 2012.  Still in the work up area of it. Healing from having gallbladder removed and biopsy of liver because of PSC.  Recently got a call regarding having Alpha 1 antitryptan deposits, as well.  Needing more blood work from me so, that they will have all information for my May appointment. Not liking that this UC disease just keeps on giving.  Nice to have this format! Haven't been on for awhile....just trying to live a normal life as possible. NOT!!!

Roberta 

UC 2007

j pouch 2012 (two step) 2/12 and 4/12

removal of gallbladder w/liver biopsy 2/2015

PSC 2015

abscess/fistula 1/2015

Judy, you're definitely not alone. My PSC diagnosis came 7 years after my colectomy and it does not affect my jpouch. 

On one hand, be thankful that you will not have to deal with both UC and PSC at the same time. Both can be a handful separately. 

Hello Jeff,

How has the jpouch worked out for you? I am scheduled for my ileostomy reversal on Tuesday, the 31st. What has your experience with PSC been like? Appreciate your insight. Judy

I've had PSC since '99.  The way I was diagnosed was with an ERCP. An upper endoscopy where a  tracer dye is injected into the biliary tree through a catheter. There was evidence"beading" in the biliary tree,and thus began the journey. You are so right about the disease that just keeps on giving. PSC partner's is a great resource for information on the web. I have labs every three months,and the main enzymes we watch is Biliruben,and Alk. phos. These are indicators of how "gunked" up the biliary system is.

Judy, sorry for the late response.

The pouch was twitchy for about a year. I had several dilations to relieve strictures, the number of poops was still high, but at least I could control it, unlike the UC diarrhea, up two to three times  night to poop.....

It took a while to my body and the pouch to get used to each other. I am satisfied with it now, and am glad I had it done.

I hope your recovered from your reversal now, and that your body and pouch get along well.

The PSC is a roller coaster.  The damage to my liver has been called severe, so I know that anything can happen at any time.  I was placed on the transplant list last week, and people can be on that list for years before anything happens. But things can go bad quickly, so it is a test of mental flexibility versus physical ability.

Tech, I hope you're doing fine.

Jeff