Glad to be here

Hello, I have been searching for a support group for some time. I was diagnosed with Crohn’s and PSC in 2016 via ERCP. It has been quit a journey as you all well know. My first hints of trouble may have come to light in 1999 as my AST and ALT were mildly elevated. Next hint of trouble was month long bout with fever/chills and pain in 2007. Two trips to Dr office and Antibiotics. I was feeling back to my old self. At that time Family Dr. did many labs, found nothing specific and followed my labs every year or so. My Alk hovered around 180 consistently. Had times i did not feel well, Crohn’s flare perhaps…Finally in 2015 I took my Family Dr advice and scheduled my Routine colonoscopy. Needless to say my Gastroenterologist didn’t quite know what he was getting into. He was very thorough and many test and labs later-(Got to know his colleague in Omaha NE who specializes in PSC) I was finally diagnosed. I am asymptomatic, Understand I have dominate strictures in common bile duct and left and right hepatic ducts with pruning in bile ducts and land of lake appearance. My alp now hovers around 350. with some elevation in ast and alt. Other labs are now normal! So all is well as I understand, Dr did say I look scary on the inside…Now back to dealing with Crohn’s inflamation and annual colonoscopies. Had some possible indefinite dysplasia-second pathologist at mayo thought it was neg. So I am having a diagnostic colonoscopy (6 mon) follow up to make sure all is well. Will get past this and then hopefully can just move on with the normalcy of life. I understand living with chronic illness as I work with people who face it daily. My husband is great support. Sometimes I think it is harder for him to accept. We are looking at the blessing and are traveling and the doing things we enjoy. Thanks for your thoughts and concerns in advance.

Hi Babs! We’re glad that you’re here too. This is a great community, full of people who share experiences with you. Make yourself at home, join in the conversations, or even start one of your own!
Seenie from Moderator Support

Welcome, Babs.

I’m sorry you had to find us but I am thankful you have… welcome to the community.
I hope you find the support you’re looking for!

Take Care,

Thanks. We all have a common thread!

A very hearty welcome to our growing community. I’m glad you found us although none of us enjoyed getting the diagnosis of PSC. But you have to move on and just live life to its fullest as you have the strength to. We are all at different points in our battle with this disease but we all have the same goal and that is to live and to live life for our families with all the strength the good Lord gives us each day. Please feel free to ask any questions you may have. If you have a specific topic you want to discuss I would encourage you to start a new discussion on that topic that way we can keep the focus on a particular topic at a time. Sometimes we all do get off course and the discussions can take many turns. It does help though for others who join us or are searching for answers to see the continuity of discussion. Keep in touch as you go down this journey.

PSC 2011 / Liver Transplant 7-2015

Have found the discussions helpful. I am sure as I go down this journey I will find great support!

Babs, glad you found us. There are quite a few members here who have both chrons and psc, so you’re in good company. Having one is bad enough, I can’t imagine how to deal with two, but I am glad your psc is asymptomatic.

What I know about psc is that it usually progresses slowly, but then we have to be ready for anything to happen at any time.

I can understand about your husband having a harder time accepting this; it is hard enough as a patient. I try to educate my wife about psc, what it is and its effects on me. While she accepts what I have to deal with, I think she does not fully understand what may be needed from her a caregiver to a psc patient, and if and when I need a transplant and post-transplant.

There is a fine line between denial of psc and living the life you want despite psc. We all have to make this decision, although sometimes we go back and forth.

I wish you and your husband the best in what you’re going through.


Thanks Jeff,

My husband and I have been in the nursing field for 40 years, this is some times a help and sometimes not. I find research and infor helpful and all in all puts things in prospective. I have found some good info on your site that have been shared but first hand life experience and support is something not available in our area of the Midwest. We are in a good place in our lives and will continue to face challenges as they come up. At this point we keep our adult kids and their spouse informed with anything pertinent. Judgement call as to how much. Did see this was addressed in conversation. Down the road I have a few topics I may throw out there such as coordinating care between various physicians and specialties. As of now seems as my family Dr is the gate keeper. He is very good and sends labs to various other Dr as needed. It is always a challenge to navigate through the health care system.

Thanks again,


You received a lot of nice replies. PSCer’s are really nice people, I have found. Over the years on this site, I have learned many have been able to manage PSC as a chronic disease. Mine took a different direction and I required a liver transplant. On February 8th, it will be my fifth anniversary. PSC is gone and the liver, which came from a living donor is doing exceptionally fine. I am grateful that medicine is better able to diagnose and treat PSC. It is rare and still largely unknown to most physicians, but when you find doctors that know PSC, your quality of life can stay good indefinitely.

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Yes, seems to be a very supportive and knowledgeable group(those who have walked the walk) are an invaluable resource. Living in Sioux City Iowa buts me between University of Nebraska Omaha and Mayo in Rochester MN. My Sioux City GI Dr has a colleague in Omaha who specializes in bile duct diseases and has done my 2 ERCP’s. At present I am on surveillance for colon cancer and bi yearly labs. We are basically monitoring and life goes on as usual. Looking forward to many good years ahead! Feel relatively comfortable with Dr’s at this point. My GI is good about consulting others as needed. Very glad your transplant went well! I care for pt’s on kidney dialysis and know how wonderful a life saving transplant can be. Thanks for your reply and support! Babs