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MRCP finally happened

Rowan clearly was sick with a virus over her spring break. Easter was ruined by a fever, vomiting and high ostomy output. We went to the ER to be turned back home, didnt even give her an IV, made me feel like I was over reacting. Then to the Pediatrician whom said she was fine and getting over it. The next day she couldnt stop with the nausea and she was obviously very dehydrated so I took her into the ER AGAIN. Luckily I did, bc her ileostomy output turned beige/off white in color which indicated a liver or gallbladder problem. The OR Flooded:eek2: literally that day so she was admitted for IV fluids by the next morning all was stable and back to normal including her poop color. Regardless the POS GI had me freaked out talking ERCP and stinting her liver ducts and jaundice and liver failure. Such a jerk! I was so freaked out. She seems fine now and didnt need any of that!

Now I sit here waiting for the results of the MRCP. I find out if Primary Sclerosing Cholangitis is real for her or not. I am very worried and scared. I am just praying that yet again the doctors are wrong... Like they have been all along. Story of my life over here. Sorry I haven't been on. Trying to focus on anything else. We are doing the Take Steps walk this year and I have a lot to do to get ready for a huge garage sale.

Results soon to come.

Good news is she had a huge viral bug and her inflammatory numbers stayed pretty stable so I would think if she had CD it would have spiraled into a flare, not being on meds at all.

The GI mentioned Tacro suppositories for the 1 inch of rectal cuff that is now inflamed. I would like to hear about the good bad and the ugly experiences. I worry bc Asacol destroyed her colon so no 5asas are allowed over here. Though I know Tacro is an immunosuppressant I worry about adverse rare possible reactions.
Aw QueenGothel, I sure wish you had longer chunks of time where Rowan's health was less of a worry. Keep trusting your mummy instincts despite the frustrating experiences with the docs--your instincts have kept Rowan as healthy as she is today. Perhaps izzi'smom could help you--I seem to remember that her daughter is well on Tacro. :hug:
Good news about the virus not kicking her into a flare! I think you are spot on about that indicating more UC than crohn's.

I will say a prayer for no PSC diagnosis. Is the MRCP a definitive test? Will it change her treatment course at all if she does have PSC?

I just keep thinking as Rowan just gets a little bit older things will get easier. Please let us know how she is doing. I hope you are hanging in there!


I know Dex hasn't been around in awhile. DustyKat - do you know if EJ was diagnosed through MRCP?



Super Moderator
Sending much love and healing thoughts your way Mary. :ghug:

@AZMOM, IIRC EJ had elevated liver enzymes which precipitated an ultrasound and then an MRI but perhaps the MRI was in fact an MRCP. I assume the results of this was what led to the biopsy being done as definitive confirmation.

Dusty. xxx
An MRCP is a glorified MRI of the Biliary System and Liver. It came back as early onset PSC. I havent talked directly with her doctor yet.

According to our hospital it doesnt matter if she is Dx or not bc there are no real treatments that actually slow the disease progression. Basically it progresses and does what it wants to do. It could be one year or two decades, no rhyme or reasoning with it. I also am aware of Dr Cox and his thinking if PSC is caught early enough it can be cured.... (Totally hearsay) so I could do nothing or I could do something. Granted everyone at our hospital says "no"... long term Vanco is a terrible idea bc of MRSA an C.diff susceptibility. All I know is if it is VEO PSC I want to do what could cure her not do nothing and watch it progress.

I am getting mixed info on the gold standard for Dx this darn disease.

I am putting a lid on it though I am not going to freak out and get upset. Regardless I am not going to sit and wait either. Sucks living in Dx purgatory.

my little penguin

Staff member
Big hugs waiting to see if it gets worse for definitive dx is horrid.

DS has a wait and see kidney thing which either could be nothing or ESRF in the end.
Not the same or even close by a long shot to PSC but they can't tell us for sure either way for another 10 -20 years or possible sooner if he suddenly gets worse plus no treatment to stop it from getting worse makes life lots of fun.

Did cchmc give you any guidance ?
Once you have been seen they will sometimes answer calls or questions up to a year afterwards ....

Hope you can find a plan , dx and some peace soon .
You and R deserve it .
Mlp, I plan to keep going back to Cincinnati and possibly off to Stanford to see Cox. Never though PSC would be part of my first trip to California. I think he will do a phone consultation.
We are still at Mott we will get opinions elsewhere and I think they completely understand that I am just not leaving any stone unturned. Talked to Cox and he said based on her current info it is not PSC but suspicion is warranted. So we wait and hope it never changes.