Wanted to share my story and see if anyone has a similar diagnosis and or path. I’m happy to have found a place where I can talk through some of these issues and learn more to have better conversations with my doctor. This disease can be isolating as it seems to be so understood.
My story began in July 2015 when I was pregnant with first baby. I was about 35 weeks pregnant when I started experiencing very intense itching. I called my doctor feeling like something was seriously wrong. They dismissed it and said to take Benadryl, that it could be my skin stretching or my hormones causing a skin reaction. I kept thinkingit felt like it was under my skin. After 4 days, I was losing my mind and researching my symptoms because I couldn’t sleep, I thought I might have cholestatis. My doctor (and probably most of my family) thought I was crazy but he agreed to a blood panel. 2 days later my doc called me and said to come to the hospital right away I was going to have an emergency c-section. He explained it was cholestasis and my bile acids came back at 14. Fast forward 6 months after my son was born I got a physical to make sure everything was all settled. My liver enzymes came back very very elevated. I got an ultra sound that day but there were no findings. My primary doctor decided I should see a heptologist to monitor my enzymes. The heptologist made me feel like I didn’t need to be there that it could just be my body reacting to pregnancy.
Shortly after I saw her I began seeing blood in my stool. I had a colonoscopy and that came back clear. She monitored my enzymes for a couple months and they remained high. She decided to go ahead with an MRCP (w and w out contract) this also came back clear. Next was a Liver biopsy. She couldn’t find a good read so she decided to send it to a pathologist at Mount Sinai in NYC. Report came back as follows: showed few portal ducts containing dilated portal ducts and medium sized ducts containing predictable fibrosis, one showing mucinous metaplasia. Associated hepatic arteoles are thickened. There is minimal portal duct inflammation and ductular reaction. Many inlet venules are dilated. 6 of 30 portal tracts lack bile ducts. Mild portal track fibrosis. Lobules show rare inflammation with a pattern of alternating regeneration and atrophy. No a1at globules are seen on pas-d. Iron stain negative.
**Finding suggest primary or secondary Schlerosing cholangitis stage 2. **
If imaging studies are negative, small ducts will be considered.
So since I already had the MRCP and it came back with no findings we moved on to the ERCP. This was awful, I left the hospital and after a few hours had extreme pain. I ended up in the hospital with pancreatitis for 8 days! The good news is that the doctor who performed the procedure let me know that based on his findings, I do not have large duct PSC. I ended up switching liver specialists at this point because I felt like my original heptologist had other priorities and I knew I needed to have really good care going forward because something was wrong. So my new doctor is calling me a small duct PSC case. He said the possibility of this developing in to large duct is unknown and every case is different. He is treating me with 250mg of Ursodiol daily. The Urso brought my enzymes down after about a month, they are still elevated on it but no longer in the triple digits. He monitors me every 6 months. I have crazy itching episodes about every couple months now that last about a week and it’s hell. I have only tried the Questrian powder once, but I didn’t really feel like it worked well.
I am currently 9 weeks pregnant with my second child and already having a tough time dealing with itch not really being able to take much for it.While I am very happy that my doctor cleared me to have a baby and I am excited, I’m so nervous that this is going to make my PSC worsen or even cause my small duct to develop in to large duct because of the stress pregnancy puts on my body.
Sorry for the lengthy post here! Looking forward to having a place where I can find out more about this crappy disease, hear others stories and have some people going through the same situation to talk to during the tough times.
Thanks for listening!