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Liver transplant list - some questions for others with experience

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Ulcerative Colitis
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Posted 4/7/2013 3:25 AM (GMT 0)
Hi.  My name's Brian.  I have ulcerative colitis and primary schlerosing choliangitis (I think I spelled it right).  I am going to be put on a list for a liver transplant soon.  I have a big question.  Once I have the transplant, will I be able to consume any alcohol whatsoever?  Even medications with alcohol in them?  A drink once in a great while or nothing at all?  That's my only question right now but if anyone who's gone through this can tell me more I'd appreciate it alot.  Just anything about the whole procedure and what's in store for me.  I am nervous as heck but not half as nervous as I'm sure I will be the night before the operation.  As those who've been through this know, I don't know when it will be.  Once on the list, they could call me up at any time and tell me to get to the hospital.  Thanks for any info you may have. 
Posted 4/7/2013 3:43 AM (GMT 0)
why are you asking that question here ? isn't there a liver forum ?
Posted 4/7/2013 3:52 AM (GMT 0)
No, I just looked.  There is no forum dedicated to liver diseases or liver transplants, so that's why I posted it here.  UC is what is causing my liver problems anyway so I felt this that forum was the most apropriate.

Post Edited (Sawyerbrownfan) : 4/6/2013 9:56:28 PM (GMT-6)

Posted 4/7/2013 3:58 AM (GMT 0)
hey, you're welcome to ask anything here - just thought you might get some some better info somewhere else - never heard of anyone here having a liver transplant -

no need to get butt hurt - we're all friends here - :-)
Posted 4/7/2013 5:19 AM (GMT 0)
Thank you. I apologize if I seemed harsh.
Posted 4/7/2013 6:15 AM (GMT 0)
As If UC isn't enough! Life's cruel
Posted 4/7/2013 6:52 AM (GMT 0)
I found this which might be of some help.

I hope you get your new liver soon...please take care of it.

http://mypscstory-ben.moonfruit.com/#/post-op-advice/4567961779

q

Posted 4/7/2013 9:02 AM (GMT 0)
Thank you for that info.
Posted 4/7/2013 2:27 PM (GMT 0)
Wow. I'm so afraid of this possibility. It's my son that's 18 he has UC and the doctor has hinted about pbc as his liver enzymes are high and a liver biopsy suggests it may be possible. Showing some inflammation and portal hypertension. He was recently started on Urso. His next appointment is coming up. I have a feeling the GI is slowing introducing him to the disease possibly so we handle the news better.

Could you tell me a lot more about your diagnoses and your symptoms. And what tests you had to confirm the attack on your liver. As well as how many years it took for progression to a liver transplant.

Please be well. I wish you all the best.
Posted 4/7/2013 2:37 PM (GMT 0)
i'm sorry you're dealing with this. Have you read about the vancomycin studies being carried out at STandrod? I don't know if your disease progression means it won't work but it's certainly worth a shot (if you haven't seen/tried it before that is). I always post this on the chance that someone with psc might be helped. One of the girls mentioned in the article was on the transplant track as well...
http://stanmed.stanford.edu/2011spring/article6.html
Posted 4/7/2013 4:11 PM (GMT 0)
Very interesting. Thank you. I know of another young teen girl in my community recently diagnosed with this dreadful disease. I have already passed the article to her. Thank you. That's 3 people instantly that you have provided hope to and quite possibly success as well. Thank you again. :))
Posted 4/7/2013 4:22 PM (GMT 0)
Canadamom, I have friends whose children have gone through this treatment and for the first time in years (since dx) their UC and PSC are in full remission. You can email me if you want their details and I'll connect you to them. Dr Cox is happy to speak to patients/parents over the phone- he says he gets several calls a week from around the world. He's great. I recommend if you're interested that you contact his office for a phone consult (he would not accept payment when we spoke to him but it's possible to donate to his research if you wish). Many drs don't know and or are dismissive of this unfortunately.

http://www.childrenspsc.org/
Posted 4/7/2013 4:57 PM (GMT 0)
How long have you had PSC? I just found out I might have it also. MY GI wants to do an ERCP test once my UC flare is under control. I had a Mrcp last week but it was not conclusive. There was some narrowing of the bile ducts but not major.
Posted 4/7/2013 9:51 PM (GMT 0)
Well let's see now. I've had UC and PSC for around 10 years or so I think. I was recently in the hospital in February for 9 days with a flare up. I began having really bad pains in my lower left abdomine (spleen) area. It got so bad that I was keeling over. I was in intense pain and couldn't function, nor could I get any sleep. So I went to the emergency room. They admitted me and during the course of my stay, my gastroenterologist came to see me and had looked over some tests they'd done. I had a colonoscopy done and some blood tests and that sort of led to the liver thing. My doctor then told me that my liver was pretty bad, it had alot of scarring tissue. The reason I was in intense pain was because my liver is blocked. Most of my blood can't get through the liver to get to my heart. So it took and alternate route (my spleen) t get to my heart. That cuased my spleen to enlarge and that caused the pain. I am taking Asacol and Urso and just finished tapering down Prednisone. The Prednisone was prescribed to me after I left the hospital. I have not had any major issues as far as sudden urges to go in public. Not in awhile anyway. I do go for Remicade infusions every 6 weeks and also get iron injections once in awhile because I have low iron levels. That has only been in the past year or so though. That hasn't been the case the whole 10 years I've had these two conditions. One thing I hate is getting anxiety when in public. Not crazy bad like I've read some people have had on this forum. But I get a little nervous in public about not making the restroom. Sometimes I am a bit nervous even when I don't have an urge, cause I know the urge could come on at any time. Killcolitis, do you have more info on this vancomycin that you mentioned?
Posted 4/7/2013 10:20 PM (GMT 0)
Read the article in the link and contact the Dr in the article's office. They're trialling it at the moment and I believe they had a 100% remission rate (in cases of UC and psc together) last I heard but that may not be accurate. Best to go to the source, I hope it's helpful for you.
Posted 4/8/2013 12:14 AM (GMT 0)
Thank you Killcolitis. I think I'll wait for our next GI appointment and ask the question directly as to what my son has. I am confused whether pbc and psc can be treated the same way. I would like to make contact with you when I know for sure what's going on. Fingers crossed.
Posted 4/8/2013 12:26 AM (GMT 0)
canadamom, I don't know if pbc and psc can be treated this way. If you need it (hope not) and would like I'll put you in touch with my friends but really I'd speak to Dr Cox, the hepatologist in the article.
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