PSC with ileostomy

My daughter recently started Ursodiol. She is experiencing mild nausea, increased gas and belching, and liquid output (she has an ileostomy). Is this a common side effect or could she be in a PSC flare. She has been a symptomatic since diagnosis so I don’t know the signs. Any input would be appreciated. I hope everyone is enjoying the holiday and hope to hear from someone when lives are not so busy. God’s Blessings to all!

Hi PSC Mom,
Merry Christmas to you and your family. I’m sorry your daughter is having side effects from the Urso. Not knowing how much she is taking, I would suggest you play around with the times of day you give it and find what works best. I took 1200 mg a day and would usually take 2 in morning and 2 at night, but I did switch to all of them at night for a while, then it seemed it made me get up and down a lot to the restroom at night. It is a valuable quality of life tool for the PSC patient. One thing that was valuable to me for nausea was Zofran. It’s non drowsy and I took it for most of the years I had PSC as needed.

Common Side Effects of Ursodiol

  • Diarrhea or constipation .
  • Upset stomach, indigestion , or vomiting .
  • Dizziness .
  • Cough or sore throat .
  • Runny nose.
  • Back pain .
  • Muscle or joint pain .
  • Hair loss .

PSC 2011 / Liver Transplant 2015

Sorry about your daughter, and especially around the holidays it’s tough to be dealing with. I see to hepatologists at the U of U Hospital and at my last visit they informed me that after years of evaluations they have found that ursodiol has no significant value in slowing down PSC, and that it is not beneficial to keep taking it. But thats what they told me so I would ask your daughters doctor and see if that is a possibility to stop taking it.


I was told by my hepatologist at UCLA that it wouldn’t slow down the PSC. However, it would help thin the bile so it flowed out of the liver, which would keep the liver healthier.

I agree with your hepatologist. It does help thin the bile which will provide quality of life to the PSC patient. No it’s not a cure, but a tool to help get you by until transplant.


Having an ileostomy has its own issues. Liquid output is very common, which I had. Did not have the nausea, belching and gas. But those can be common too. All can be effected/triggered by diet.

Thank you all for your input. She is feeling much better so I don’t think it was the Urso; maybe just a coincidence.
Happy New Year🎉