I posted the following to Jeff. Can anyone else chime in?
My diagnosis is in limbo. My doctor(s) have said that with my Ulcerative Colitis (now just found out possible Crohns) and my enlarged liver on a CT, coupled with my occasional strange “episodes,” we are possibly dealing with PSC. I had an MRI scheduled and saw another doctor for a second opinion and he said the MRI and diagnosis is not crucial right now because my liver enzymes look good. He believes in a minimalist “wait and see” approach because there’s not much that can be done with PSC anyway. He said MRI is not necessary unless my episodes happen more frequently than a few times a year… and to address it if my enzymes are off. Nothing really other than low iron stores (ferritin), and low Vit D in my bloodwork (which is odd because I am always outdoors and am training for an Ironman and gaining, not losing, muscle).
I have these strange episodes where I get stabbing, throbbing pain under my ribs (mostly on my left side), then hours (sometimes a full day) of unrelenting, bright yellow watery diarrhea, sluffing of skin/intestinal bleeding, bright yellow acidic vomiting, and then blood in my urine. It wipes me out for a couple weeks with energy also.
My gallbladder was removed with signs of chronic inflammation and lots of sludge over 2 years ago. At that time, I had signs of infection in my bowels and stomach. Nothing really else…
Last week I had another episode (within a month of the last one) and am waiting to see if he now recommends the MRI. Do these symptoms sound familiar? Everything I’ve read says PSC is asymptomatic.
Rochelle,
I just read your post here at lunch so only have a minute to respond. One important question. Are you under the care yet of a Hepatologist? This is a physician that specializes in the diagnosis and treatment of PSC. If there is suspect for PSC I’d be seeing a hepatologist. One of the first thing he will order is an MRCP w/contrast to look for beading/stricturing in the bile ducts. He may also order an endoscopic ultrasound as well as an ERCP procedure. Unless it’s a hepatologist telling you to wait and see, I’d be finding me a hepatologist as soon as you could. You should not need a referral from your current doctor. Any major hospital that does liver transplants near you will have a hepatologist. Just call or visit their liver transplant section. Good luck.
Mark
PSC 2011 / Liver Transplant 2015
Thank you for your response, Mark! I am moving to a temporary home tomorrow for 3 weeks and then we are buying a home. We should move in the first week of September. I will definitely look in to going straight to a Hepatologist for diagnosis. The MRCP was scheduled by my first doctor, but the second says to wait. After this last episode (it’s terribly upsetting and painful), I am ready to figure out what this is.
Thanks again.
Talked to my GI again today. Not sure if I mentioned I get high levels of blood in my urine after these episodes for days… have seen a urologist with no evidence of stones. My doctor wants that MRI/MRCP as soon as I’m ready for it. For some reason the episodes are like child birth, and a few days after, I seem to down play the pain and forget that I was in fetal position crying and throwing up through the night. Ha. He’s on the fence if it could be symptoms of PSC and wants the MRI to get a more clear look at what we are dealing with here. I’m in the middle of a move, so I suggested we wait until my life settles down a bit, or I have another episode, which ever comes first. 
I’ll keep ya updated.
Let me know if you have had anything similar…
Thanks!
Rochelle
UC can cause quite a bit of abdominal pain and bleeding. I do not know about crohns.
I am thankful that when I had UC, I did not have much pain at all but some bleeding.
Jeff
Rochelle,
So glad you finally got a doctor to agree to the MRCP. Don’t wait too long though. You condition may not improve so you want to stay on top of this. You don’t want to have to have a more serious incident in the mean-time. Keep in touch.
Mark
Thank you for your replies.
I do know UC can cause those problems, but since my UC is in remission according to my last colonoscopy, the doctor is most concerned with my enlarged liver from the CT, the intensity and short duration of the “episode” (that really acts like when I had C.Diff), and the blood in the urine after. He says they just don’t all correlate when it comes to UC or Crohns (unless I had a stricture, but I have no evidence of that either)… 
That’s the “I don’t have any clue” face. ^^^
I had UC . My GI monitored what he called, “slightly elevated” liver enzymes with blood tests each year for 5 years. Gall bladder removed and he did a liver biopsy. I had Stage III liver cirrhosis. That became the basis for my diagnosis of PSC. I had all the other tests you mentioned over the next 12 years under the care of a hepatologist (very important).
Not much you can do for PSC but medicate your symptoms. I got deathly ill at the end. My life was saved by a liver transplant from a living donor, a true angel, five years ago.
I agree with advice to see a hepatologist. It may be too soon to rule PSC in or out. But, a hepatologist will know best on how to care for you liver. GI and urologists may be part of your health care team. They were for me.
Not sure if what you’re describing is PSC, best to let a hematologist determine that. But… for what it’s worth:
PSC can be asymptomatic when you’re not in the middle of an episode. When you’ve got strictures and bile backed up (cholestasis) then, well, I get severe indigestion, fever, chills, vomiting, etc. This is because of infection in the liver. It needs to be treated with antibiotics, and possibly ERCP to open up the strictures. This is a serious condition, and can be deadly.
When I was diagnosed, I was told to get annual MRCP and annual colonoscopy. This is because those with PSC have higher risk of both liver and colon cancers.
Thank you both so much for your comments. A hepatologist sure sounds like a good idea.