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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Pain & Nausea


#1

Hello, I am new to this group. My name is Ashley and my boyfriend Mac was diagnosed with PSC a little over a year ago. Long story short, he has had stents placed and removed to help keep everything flowing. He has not been prescribed any medication for the disease yet. He has been eating a clean diet, the AIP (Autoimmune Paleo Protocol) diet for about 4 months now. He has had waves of pain & nausea for a few months now. These symptoms usually occur early in the morning around 5-6am. Sometimes they occur in the middle of the day too.

He is worried about these pains because in October he ended up getting sepsis & cholangitis, which started with similar symptoms. So my question is, has anyone else here experienced waves of pain & nausea? Is this normal with the disease, or something not right?


#2

Hi Ashley and welcome to the group. Does your boyfriend still have any stents in place? If so, they may be infected. Stents are a known place for infections to breed in the bile ducts. I’d encourage him to ask that they be avoided whenever possible and just to the balloon dilation instead.

For the waves of nausea, nausea is a symptom of PSC. I’d ask for a Rx of Zofran. This is a non-drowsy anti-nausea medication. It should help. Sometimes avoiding spicy foods will help with some PSC symptoms. Everyone’s different so encourage him to eat what he likes. A good diet is nice and helpful, but with PSC, sometimes you just have to eat what you can eat due to the nausea, even if that means McDonald’s burgers. We all can eat healthier but the good diet will not change the progression of the disease to my knowledge.

If he continues to have the pains, he probably has another blockage or duct infection. I’d certainly be in touch with his hepatologist as soon as possible. Make sure he’s seeing a hepatologist and not just a GI doctor only.

We are here for him and you with anything we can do to help.

Mark
PSC 2011 / Liver Transplant 2015


#3

Afinn,
Who is treating Mac’s PSC? Hopefully, it is a hepatologist familiar with PSC. One young GI came to my hospital room after I had a cholangitis infection. He asked questions about me and said he wanted to know more about PSC than he learned in a textbook. His professor had said he would not likely see a patient with PSC in his lifetime.

The doctors want to do the right thing, but they don’t always know. I was fortunate to have doctors at a teaching hospital. They collaborated on my case. I think that improves the quality of care one gets. Stents were never used with me. They gave me IV antibiotics, steroids to reduce inflammation and when there was a blockage, an ERCP procedure to clear the bile ducts.

Keep posting your questions.