PSC and uncertain future for J pouch

Wow, sorry about this turn of events. This is the first I have ever heard that PSC is a contraindication for a j-pouch. It is well known that chronic pouchitis and pouch failure rates are higher in those with PSC, but quality of life is similar overall. I did some digging and vitually all of the literature commented on the affect of PSC on pouchitis rates, but no mention of pouchitis actually affecting the course of PSC. 

Here is a sample of one of those:

http://www.ncbi.nlm.nih.gov/pubmed/21279368

This one article did suggest that the autoimmune inflammation of UC might be a factor in the development of PSC ("gut-liver cross-talk"). It might be an interesting read for you.

http://www.ncbi.nlm.nih.gov/pm...4124273/#!po=53.0303

Everything I saw indicated there was no effective treatment for PSC and its course was rather independent of the UC course. This is highlighted by the fact that it can preceed a UC diagnosis by decades. But, there is much still that is unknown. I certainly would seek a second opinion before resorting to more surgery (pouch removal).

Good luck and I hope the biologics work for you.

Jan

What is PCS?   What were your symptoms for pouchitis?

Thanks Jan

I will be doing some further reading but if I want a second opinion I will have to go to a Specialist in the U.S. as this Doc is the only one I am aware of that specializes in PSC.  People in Vancouver travel to see him in Calgary.

Step PSC is a liver disease that is rare but 70-80 percent of people who get it have UC or CRohan's.  My pouchitis symptoms include a raw sensation inside where my pouch is located and an unwell feeling.

I have never heard this before.  I have had chronic pouchitis for 20 years (see attached pic from 2012) and don't have PSC nor do I have liver damage to my knowledge.  I had always thought PSC is simply another manifestation of autoimmune disorder, independent of whatever else is going on in your body.

There may be another reason for removing the pouch, however: I read that persons with IBD and PSC have a 30x greater risk of developing cololorectal cancer, and you still have your rectal cuff.  Here is one other study on this:

http://www.uptodate.com/conten...lerosing-cholangitis

A liver specialist sounds like the right guy. Whether pouchitis affects the PSC course or not, it is a reasonable plan to do whatever you can to bring it under control. I presume you've looked at the pouchitis article link in the "sticky" post at the top of the Pouchitis forum?

I presume you have tried the traditional antibiotics?

Don't beat yourself up about getting the j-pouch. Plenty of folks have been diagnosed with PSC after getting a j-jouch, and plenty more before getting a j-pouch. 

Jan

Thanks Jan

I am on the road right now but will be spending time reading your links and researching others when I get home.  There will be time as need to try bio logics first then look at if it is working and that kidneys are doing okay.  I so appreciate everyone's support and if you have anymore links that will help with further educating myself please share.  Thanks again.  ��

In case you can't locate the post I was referring to here is the link:

http://www.cghjournal.org/arti...3%2900483-7/fulltext

Jan