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Liver complications? PSC

Apparently, in a small percentage of IBD patients, this liver disease can develop. Last week I saw the nurse practitioner are my GI doc's office. She is technically highly qualified, and since Dr Johnson is head ot the GI department at EVMS, I'm pretty sure she is good at what she does.

She said she had noticed that in my last few blood tests, my liver enzymes were slightly elevated, and explained different things that can cause it. She ordered an ultrasound of my liver. Results came in, and she just called saying my bile ducts are slightly dilated, so she wants me to have another test - MRCT. She said she is trying to rule out PSC - Primary Sclerosing Cholangitis.

What has me alarmed is that the blood tests she saw were from last January, March, and May. During that time I've seen Dr Johnson 4 times, and my primary care doc twice. None of them mentioned the elevated liver enzymes. Dr Johnson has been doing this for over 30 years. My PC doc is a resident at the hospital where Dr. Johnson is dept head. They share information about me, with my permission. So, apparently my liver enzymes didn't raise any alarms with them. Both of them have told me what was good and bad, and what to do, and neither one mentioned liver enzymes.

This is all piled on top of the fact that I'm having difficulty getting any assistance with the cost of Humira because I'm on medicare.


I have heard from the GI and IBD nurse both that alot of the meds they put us crohnies on cause liver problems. Are they thinking this is a result of the medications perhaps?
Thanks Terriernut - that was my first thought also - it would explain why the doctor isn't alarmed. The nurse practitioner is just ordering test after test. :(

I haven't talked to anyone else except the NP, since she just brought it up last week. She doesn't have much in the way of interpersonal skills - might as well be talking to my computer. IMO she's purely a technician.

She did something similar once before - ordering a bunch of icky tests over nothing - and I complained that I'd rather see the other NP, that this one seemed test-happy. But what do I know... not much, really.


I think she wants to be sure everything is ok, and 'technically' all the tests are to keep on top of things. Which doesnt make it easy for you, but, I'm glad they are doing it. My liver isnt great either. So, 6MP is a risky drug for me, so they are trying to keep doing every 2 weeks tests, and plan on doing it even after I've been on the drug for awhile. (usually it's every 3-6 months after you've been on it for awhile)

I know it must be very worrying for you, but I hope they have your best interests at heart. And I hope that its because of medicines you've taken, and not anything else.
I'm having the opposite problem--my GI won't test my liver function no matter how many times I ask and I'm on Remicade and Imuran. Now I have a scary amount of lipids in my blood and he still won't check my liver or pancreatic function. I'm going to ask my GP to test it tomorrow when I see her. She will usually order a test to check it out.

I hope this turns out to be a non-issue, Miss Underestimated!!
Thanks for the good wishes. :) I'm trying not to think about it, but it keeps popping into my head now that some time has passed and I know they should be getting results soon
They should have the results already!! That's crazy. You could always go tot he hospital where you had the test done and request a copy of the report. I work in Radiology in a hospital in KY and we have the test results back the same day, but doc usually gets them the following day. I'd keep riding them until they tell you something.

On a different note, I've been having the same problem with my liver enzymes being highly elevated. I had an MRCP done and have dilated bile ducts, but they think its because of something that happened when my gallbladder went bad. I have another blood test to check it again and then I may have an ERCP done to open up the duct.

I hope they give you some answers soon!! I'd call and hound them :)
Thanks. Yes, I had my GB removed when I had the resection, they said it had sludge in it. I hope that's it. They usually send me something within a week-10 days.

I was thinking this AM, the radiologist is probably somewhere in the Caribbean for the holidays. ;) I'm going to call them anyway next week about the Abbott medication assistance foundation.

When I start worrying about it all, I think my head is going to explode, so I push it out of my mind, and go read about the children and teenagers who have to deal with this - get my perspective back in line.
I know. Its really hard not to let yourself get engrossed in it. I've had it since I was 15 and I STILL let it get the best of me sometimes.

I'm kind of feeling like that right now! One week away from surgery and I feel like I'm obsessing about it. oh well!!
I don't know how I would react if I was waiting for surgery. That's has to be way worse than waiting for MRI results. It would be really hard to push that out of your head.

I could do that when I was working - but retired, and now I have to find something else to get obsessed with.
hey Miss underestimated :) I know its been a while, but did you ever get results back from your MRI and did you find out if you have PSC or not?
Oh, thanks for asking. Yes, all the tests came back ok. A few weeks after the last scan, my blood tests were normal. Everyone insists it isn't possible, but the dates of the high liver enzymes coincided exactly with the dates I took Entocort, so I believe that was causing it. As soon as I stopped taking it (I went on Humira) everything tested normal.

I felt like framing the letter that gave me the test results.