Finally Sharing My Story

I’ve been a longtime lurker on the site since my PSC diagnosis in February 2016 and thought it was finally time I share my story with fellow PSCers. I’m a 31 year old mom, wife, and marketer.

In May of 2014 I had been experiencing some abnormal (white colored) stools and decided to see my primary care doctor to get things checked out. My bloodwork showed elevated liver enzymes, so over the course of a few months we conducted an ultrasound, MRI, and colonoscopy. All which appeared normal and did not show any signs of PSC.

The colonoscopy did show I have Ulcerative Proctitis (a less severe form of Ulcerative Colitis which causes inflammation in the last few inches of the large intestine) and a polyp was removed.

I then had an ERCP conducted and had my first introduction to PSC at this point when my Gastro casually mentioned that PSC might be a possibility. He indicated some of my liver ducts were a little more pink than usual but it was a small chance since it’s a rare condition and there was not a clear sign during the ERCP. He did not seem worried and felt that there were no more tests we should run at this time. My husband and I wanted to start a family soon and the Gastro fully supported continuing to live my life as normal since everything else appeared fine. At this point we did a little research on PSC but put it at the back of our minds since I had been feeling good and the doctor did not seem concerned.

In December of 2014, we were blessed to find out I was pregnant and expecting a baby in August. I continued to run my liver bloodwork to keep an eye on things. During the course of my pregnancy, all of my liver enzymes normalized. I ended up consulting with a new Gastro during my pregnancy and she indicated that they often see this in pregnant women with autoimmune diseases and that she’d like to figure out what’s going on after I had the baby.

The rest of the pregnancy continued to go smoothly and in August 2015 I gave birth to an amazing little boy. As suspected, my liver blood work jumped back up and I was sent in for another MRI and biopsy in November 2015. Once again, I had my doctor stumped since everything came back normal. We decided the next step was to go see a specialist at Rochester Mayo to get answers.

We headed to Mayo in February 2016 and during my initial consultation it was suspected that I had PSC. They wanted to run some more blood tests (p-ANCA and c-ANCA) to confirm and have me consult with an additional doctor the following day. The test results came back positive for PSC so I was officially diagnosed.

I was PSC symptom free until September 2016 and have since experienced itching, nausea, vomiting, insomnia, abnormal stools, and dark urine off and on. I’ve had two ERCPs and one hospitalization with an infection. It’s definitely been a roller coaster, but I’ve had more good days than bad at this point.

One thing that helped me the most is reading other PSCer’s stories on here and in blogs. I often found the people who blogged were at the end stages of waiting for a liver transplant or post-transplant. I decided to start a blog (http://www.PSClife.com) to raise awareness of PSC, keep my amazing support system up-to-date on my journey, and help keep me accountable in living a full life no matter how I may be feeling.

My hope is that my blog can provide a glimpse of what it’s like living with a chronic condition from the early stages to wherever it may lead. If sharing my story helps one person learning of their PSC diagnosis or encourages one person to consider being an organ donor, it was worth it.

Feel free to check out my full story at www.PSClife.com if you’re interested.

Thanks for already being such an amazing community!

5 Likes

Dear MyPSCLife,
Thank you for sharing your story with us on the forum. I look forward to reading your blog and keeping up with your progress. Please let us know if there’s anything we can do to help you. I encourage you to stay with a hepatologist specialist for the furtherance of your treatment of this rare disease. I would try and see him at least twice a year for now, and that will need to increase as your symptoms increase. Watch your MELD score and when it starts climbing up towards 12-15 or so, I’d ask to be listed on the transplant list. If you have read much here you will know that the MELD can jump drastically in PSC patients without warning. Try and get at least a 30 minute walk in a day or some other form of exercise as you go on this journey. It will make all the difference in the world when the time for transplant draws near. Thank you again for stepping out and we invite you to be active in the group and feel free to answer any posts that you wish to contribute to or start new posts as well. We are here for you.

Mark
PSC 2011 / Liver Transplant 7-2015

I too was diagnosed with PSC in 2016, Crohn’s in 2015. The last couple of years have also been a roller coaster ride. Glad you are doing well and living life as it comes! This is a great site to find support and a new normal. I also am asymptomatic. It is nice to be aware of signs and symptoms which can develop. As this condition is rare my family Dr and GI are reaching out to other professionals in surrounding Cities which is reassuring. I have found the blogs also helpful. Best to you!

Babs, I am glad you’re asymptomatic, but you’re right to be aware of the symptoms that can develop. Sorry you have two diseases to pay attention to. One is bad enough.
Jeff

At this point the inflammation caused by the Crohn’s is the biggest concern. Considering my PSC/Crohn’s and +family history of colon cancer I am sure we will be discussing a new plan of action. My yearly surveillance colonoscopy showed indefinite for dysplasia so hopefully we can get the colitis under control so we can get a more true picture. Glad my PSC labs are stable. Just taking things in stride for now!

Babs

Thank you for sharing your story, MyPSCLife. I look forward to checking out your blog!