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Primary Sclerosing Cholangitis

Rowan was diagnosed with PSC via MRE they have not taken a biopsy yet because she has good liver numbers. We will be seeing hepotology while in Cincinnati in the next couple of week. Trying to get her on vancomyacin next, soon to start hydrocortisone enemas for chronic pouchitis and then VSL enema thereafter. Probably going to have the pouch removed and go to an end ileostomy.
Are you removing the pouch because of the chronic pouchitis or is there a theory that she could be dealing with CD? Sorry I think I have missed an update, so sorry to hear of all you are dealing with hope the trip to Cinncy goes well! Hugs.
The pouch is a failure. It got dilated and bogged down currently dealing with chronic pouchitis and I am sick of all the antibiotics. They want me to redo it and I am not doing that. Her life is already shortened with this new PSC so I really don't need her to be dealing with jpouch issues on top if it. Realizing she will probably also always be on Vanco as well, trying to minimize the drugs. 6 surgeries were enough. I have had it completely, I was promised a cure and she was better off with her colon diseased and bleeding than now. I really am sick of signing papers allowing doctors to cut my kid up.

This is so much to take in, do you need to make the decision right now on the redo or do you have some time? I can imagine you have just had about all you can take over the last year. This is a lot to digest.

Just want to send you lots of love, hugs, and prayers right now. We have only dealt with a crohn's diagnosis, but I remember those first few weeks being overwhelming sad and difficult.

When I think about the major medical advances of the last few decades I am just amazed. Sounds like there are some clinical trials and lots of research for PSC.

Big (((Hugs))):ghug::ghug::ghug:


Staff member
Mary, I don't know what to say... I'm so sorry you have more to deal with :ghug: I agree with Johnnysmom, you have had to make so many decisions, have been given so many conflicting opinions and treatment options, if you can take some time to think, at least until the Cincy apptmt, it may help you feel certain about whatever your decision may be.

Lots of love and prayers for you and Rowan!!! :ghug: :ghug:
No it was her second MRE her last one was Feb 14th 2012. It was on there as well but easily missed because it wasn't as obvious and could have been easily mistaken for normal.

Well I have my Cinncinnati appointment, I am keeping it and going to talk to them about it, but the pouch is coming out and we are done with this damn j-pouch bs. I am going to Cincy basically to see if they can take it out less invasive and to see the GI, and hepotology. I am very emotional now because I just had to administer her 1st of 7 hydrocortisone retention enema. The pouch cannot come out fast enough in my opinion. I want and end ileostomy. They can leave the rectum intact for her to decide later. I just cannot do this anymore. I am flipping heart broken. Talked to her surgeon and she tried to convince me try it again... once I said, I will outlive my child and you actually want me to deal with the issues of a j-pouch as well. She needs to live what life she has.

I know there are advancements in medicine happening right now. I don't mean to be so doom and gloom. I just am so pissed off, I could scream. Which I did do last week, at surgeons and doctors and I kicked two residents out of my room.
Clash sorry I didn't completely answer your question.... They did a ton of biopsies and CD did not show in them. Regardless there are studies that show Pouchitis linked to and PSC.


The doctor from a fellowship at Cincinnati, our hospitals new attending told me some people at Cincinnati are calling CD and UC a spectrum IBD disorder that some believe UC really is CD and can manifest itself at anytime later in life. I was surprised to hear someone tell me that.
I know Mary you have always been very level headed and so great about considering all of Rowan's options. I am sure if you feel so strongly about the removal of the jpouch it is the right thing for her.

Cincinnati is a wonderful hospital. Rowan will be in very good hands.

I plan to leave the rectum somewhat intact (if I can) so when she is old enough to decide for herself she can decide to redo or live with the bag. Right now she has no body image issues and she is fine with her ostomy. She hates me for the enemas so I defiantly don't want to be doing them for years let alone dreading tonight completely.


Super Moderator
Oh my goodness Mary, I can't even begin to imagine the heartbreak and sorrow and the fear and frustration you are feeling right now, my heart goes out to you. :ghug:

Sending you all the love, luck and well wishes I can possibly muster for the decisions that are before you Mary. You are an incredible mum and advocate for Rowan and whatever you decide you can be be rest assured it will have been done with the utmost love, care and compassion for your darling girl. Remember, there are no wrong decisions here Mary just what is right for Rowan and you know that better than anyone. :hug:

In my thoughts always. :heart:

Dusty. xxx
Thanks everyone. The hardest part to stomach is I was so scared of CD. Now this is 1000X worse. I want to blame someone or punch something, and all I do is cry all the time now. I just cannot come to terms with this disease and how morbid it is. The lack of treatment is unbelievable, the look on the doctors faces. Said it all. Unfortunate when they told me I knew what the disease was already, I just broke down right there. Then there is the Tx. I mean really how do you approach asking a healthy person for part of their liver. The statistic are just absolutely terrible. As positive as they appear on paper, a liver transplant only buys so much time before you need another one and another one. Then the drugs afterwards. It all breaks my heart, I keep looking for a light at the end of the tunnel and all I find is darkness. It just sucks. Everytime someone asks me how Rowan is I just cry. Most have no idea the seriousness of this new diagnosis. Or even know about the new diagnosis and then I have to explain it. I really don't know how much more I can take. I am so sick of being the person everyone feels sorry for and I cannot even imagine what she thinks when she keeps seeing me break down all the time.

Regarding the pouch we are going to Cincy before making any changes. Her surgeon will not be doing anymore surgeries on Rowan. Not that I think she is a bad surgeon or anything. I just want the most highly recommended skilled surgeon in the building, and it will probably happen in Cincinnati.
((((hugs))) I'm sorry. I don't know a thing (other than what I just googled) about this disease. You have every right to feel the way you do right now. That is a lot to take in. I will keep Rowan (and your family) in my prayers.


Super Moderator
Mary, there are no words I can say to take the hurt away and I just wish I was there with you now to hold you. :ghug:

When I read the title of this thread it is one of those things that makes you draw your breath in and hold it. My heart is breaking for you which means your heartache must be unbearable. You are in my thoughts and prayers Mary and if there is anything I can ever do please just say the word. :heart:

Dusty. xxx


Staff member
I know it's so little to offer but know that you and your family are in my thoughts and prayers. :ghug:

There is a site you may want to look into, www.carepages.com . My cousin's baby was born with a heart defect and they have used this site for years to keep everyone up-to-date on their son's condition and it's relieved them of the pain of explaining, answering questions, listening to well-intentioned advice, etc. We all know there are times that those shared conversations are appreciated and times when they become painful and draining. :ghug: You can update as much, as often or as little as you want re Rowan and your 'page' can only be viewed by those whom you invite, close friends, family, etc.

I so wish I could do more to help you now :ghug:


Well-known member
Mary, I am so sorry it has taken me days to respond. I was just so thrown by this latest development and breathless and speechless. I have never met you yet my heart is literally breaking for you. I actually lost sleep last night. I kept waking up thinking this was all a bad dream and that the docs were going to come in and say they made yet another mistake. Gosh! If I am feeling this way I can only imagine how you must be feeling. I am praying that because she is young and medicine advances at great speed these days that they find a way to help all sufferers of PSC and that this becomes another blip on the screen.

You are an inspiration to us all! Hugs, kisses and most of all prayers!
Let us know when you are here. We need to do lunch. JohnnysMom is a Cincinnati lady too. I'm sure Mallory would love to meet Rowan! It's hard to hear of all of these tough times with the kiddos. We just had clinic on Wednesday and I just cried no stop for like 20 minutes. Sobbing. Couldn't barely speak or get my hubby in speaker to talk for me. The frustration just got the best of me. The disease and the worries that come along with it are so frustrating.
Thanks! I already have been in contact with Johnnymom privately. It would be great if we could all meet up I have no idea what they have in store for us. I am under the impression it was originally outpatient but with this new diagnosis the clinic nurse mentioned getting hepatology more involved an possibly testing her. She mentioned the Ronald McDonald House so I am wondering if in fact this has changed the course of her second opinion dramatically. Still waiting on a date, as of today they should now have all of her new records to go along with her other records. I overnighted the discs and results.

The clinic nurse in Cincy was worried about her original colonoscopy slides from Detroit before we transferred her to U of M. When I asked why she said she cannot find them. Great now they lost them, I was told at U of M it was very taboo to keep or lose someone's slides. I hope they found them. Damned if I do damned if I don't. They said no you cannot drive them there, I think they would have been safer in my care though it would have been weird to have slides of my kids guts sitting around the house.
Just wanted to send you guys a hug!!!! Thinking of Rowan and continuing to send prayers her way. As the others said I wish we were neighbors so I could come give you both a big hug!!! If there is anything we can do long distance please let us know!!!
They are going to try to do a liver biopsy while she has her next surgery, if they do an ex-lap. Otherwise we are putting that off until after she heals from the surgery. Later we are also supposed to have a ERCP to know for sure if the PSC is real. The liver hepotology expert I met with in Cincinnati felt the inflammation was very subtle on her MRE. But an MRE is not usually how they diagnose it anyway so it might just be a bad picture because that is not what they were aiming to view in the MRE. Also they think she has pancreas divisum.

Pancreas divisum is a birth defect in which parts of the pancreas fail to join together. The majority of people with this birth defect/anomally never flare from it the 1% that does has pantretitis flares. It can be surgically corrected but this is usually avoided unless the person is really sick from it.
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Grace has pancreas divisum. Actually has has what looks like 3 small pancreases joined at the end.
The Mayo GI said most don't have a problem with it but it's something to put in her records.

So do you feel like she has PSC? I know you have two different doc saying different things. Hugs.
You know I hope not. PSC is way too scary to deal with. I have no idea what is going on anymore. I just know I cannot get to her end ostomy fast enough. So sick of over medicating her and being in the hospital I could just scream.

my little penguin

Staff member
Hugs I wish it was easier and you could find out once and for all.
not knowing is hard but sometimes better sometimes not so much.