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Hello. This is my story, which is not as bad as many that I have read. I will try and stay on point. In 2014 I had an ultrasound and was told that my gall bladder needed to be removed via keyhole surgery. Within weeks it was removed via a cut about 3 inches long. My gall bladder contained over 100 stones and had yellow necrotic tissue. The next year I had surgery for the incisional hernia that I got at the surgery site. Then the year after that I had the hernia surgery again but with mesh. About two years ago I thought my hernia was back and my liver enzymes were also going up. This time it was not a hernia but a fatty tumor called a lipoma. After a little side trip after an ultrasound to get a benign growth removed from my kidney which involved six small cuts to look for cancer which resulted in another lipoma below the first one - I still have both of them and they bother me occasionally. My doctor put me on a statin for the first time and I was referred to a gastroenterologist for possible fatty liver. After a month on the statin I had my first but not last experience with pruritis. I would take Benadryl and go to bed with ice packs - One wrapped around my feet and another one on whichever part of my body felt the worst. I also had poor appetite, gut pain, orange urine and small pale stools I discontinued the statin and was back to normal within weeks. After MRI and C/T scans and more blood tests the gastroenterologist suspected PSC and wanted to do a liver biopsy. By this time the pruritis was back and I was having trouble eating. I was put on Ursodiol which after the dosage was adjusted twice continues to stop the itching. I did not want the liver biopsy and requested a second opinion. I was referred to the University of Michigan. More blood tests and an MRCP resulted in an ERCP being scheduled. During the ERCP they removed stones, sludge and debris from my main bile duct and my left hepatic duct. They could not get access to the right hepatic duct. They also used two balloons to widen constricted areas. I felt poorly for about a week after the procedure - fat lip, sore throat and sore gut. I am feeling fairly good now and being careful not to eat fatty foods. I am scheduled for a second MRCP in June and a follow up appointment in August. After reading multiple posts it sounds like I should expect more ERCP procedures in my future. I had positive experiences with in-person support groups in the past for other things but this is my first attempt at an on-line forum. I worked on this post as a text file and pasted it.

If you live near enough to Detroit (you referenced UofM) look up Dr Kimberly Brown at Henry Ford Hospital, she is my doc and is the best doc I have ever encountered in any speciality in health care. She happens to specialize in PSC. Try to see her. Expect more ERCPs and if you get pancreatitis after them it hurts but is worth it. Drink lots of water everyday, it helps in my opinion.

Thanks for sharing. If near Chicago, Dr. Helen Te at University of Chicago treats PSC as well. Liver biopsy does tell you which stage you are in, and if you are like me going on 20 years, a benchmark that is helpful in determining whether you are stable (I am) or getting worse. Ursodiol for about 17 of those years, so very lucky.

Thanks but I am happy with my doctor so far. I have only seen him once. It is good to know that there are choices out there. Does anyone know of an in person support group?

SillyGoose,
I am glad you’re getting good care by your liver doc. Hopefully will get some good news from your schedule MRCP.

For your question on in person support groups:
One thing my hospital does is run a mentor program. If any patient has question/wants to talk with someone, they will assign a mentor to talk with them. So at least they can get a one-on-one from someone who has been down that path.

They also have weekly meetings/classes.

You might want to ask U of MI if they have anything similar.

Jeff