Newly Diagnosed, Pregnant

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!

Sara, this seems to be a duplicate of your other post. OK if we delete it?

Yes!! Sorry about that! Thanks :slight_smile:

Hi Sara, I wish you all the best with your new pregnancy, you sound positive and strong regarding unknown developments and your future experience with PSC. I was diagnosed ten years ago and had no itching, no symptoms until last year when the itching began and I had to begin endoscopic treatment for portal hypertension. I found that 100% pure Jojoba oil really helps quieten down the inflammation in areas where I have had an itch ( a rash has occurred in those spots which disappears if I stop itching) it also seems to stop the desire to itch? My body has responded positively to diet changes, high carbohydrates, no sodium, minimal sugar and lots of fibre. I generally don’t eat meat. Thanks for posting, your story was inspiring. Winnie

I wonder if you could track certain things that you do. It seems if you only get itchy every couple of months, there might be a pattern to it. Do you eat anything with cardamom, coriander, cumin, chili powder or pepper, jalapeno peppers, curry powder? Those are the ones that bring incredible, insane itching for me. I rarely get any insane itching anymore because of all the habits I’ve established: avoiding spices and fatty foods, getting some sun, and exercising every day earlier in the day rather than late at night. There’s more than that, but you could track your own habits. Also, I find eating enough oil helps, such as occasionally eating sardines, or using olive oil in cooking etc… Using castor oil on my skin instead of body creams helps a lot. Maybe take down all the tips you see under itchiness on this website and experiment with them. I’ve had this illness since 1998, and I pray and hope you do very well as I have. Good luck with your baby!! If it’s a boy, you could name him Steven after our hearty, former forum leader.:wink:

Thanks for much for your reply! I will definitely try jojoba oil, and I have started logging my daily intake to see if there is anything that gives me flare ups.
Appreciate your support :slight_smile:

Thanks Lara! I do eat a lot of spicy food, I will try to cut that out and see if it helps. This last bout had lasted longer than usual, I am willing to do whatever I need to in order to make it stop! That is so encouraging and hopeful to hear that you have had such a positive journey, especially being diagnosed so long ago. Do you have large duct or small duct psc? If you don’t me asking, are you taking Urso? I appreciate the well wishes on the baby as well! Thank you so much!

I’m not sure about small or large duct because they never told me. I have take Urso the whole time. First it was 1500 mg per day, but now it’s 1000 mg per day. It’s supposed to help with the itching and reducing enzyme counts but I have no idea if it helps with the itching. They lowered the amount when they found out too much is not good. It depended on my weight.

I can still have italian seasoning, onion powder and garlic powder, so that’s about how all my food is seasoned.

Good to know, thank you! I take 750mg a day currently. My doctor also said increasing the dosage did not prove to slow progression of disease in any way.
Thanks for letting me know!