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03-24-2012, 05:38 PM   #1
AngieFevo
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Location: St. Leonards-on-Sea, United Kingdom
Liver/bile duct problems

I am having problems with liver/bile duct. Had my gallbladder out a year ago and still getting lots of pain. Have recently had ERCP and sphincterotomy for Sphincter of Oddi Dysfunction. I have a stent in at the moment which is due to be taken out next week. I have had Crohn's for 36 years and have an ileostomy and recently read that these problems may be associated with Crohn's and steroid use. Does anyone else have this?
03-24-2012, 09:43 PM   #2
David
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I'm sorry you're having so much trouble Have any of your doctors brought up the idea of Primary Sclerosing Cholangitis?
03-25-2012, 05:21 PM   #3
AngieFevo
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No, but I have looked into it a bit and think it is a possibility. I will ask them if it carries on.
03-29-2012, 12:02 PM   #4
David
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I saw you requested "additional support" so free bump in the hopes that someone else out there can provide you some additional insight.
03-29-2012, 07:52 PM   #5
DustyKat
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I have no personal experience with the dysfunction but I have not heard of it being associated with steroid use. Since you have Crohn's would it be more likely that is due to past inflammation in the duodenum that caused narrowing and scarring?

Dusty. xxx
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04-02-2012, 07:42 PM   #6
AngieFevo
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Hmm, hadn't thought of that Dusty. I don't think so though as I haven't had any problems with duodenum that I am aware of. I have read some stuff about it and there is a connection between Crohn's and bile duct problems.
04-05-2012, 08:50 PM   #7
Miss Underestimated
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There are tests that will tell if it's PSC. I've been tested for it - first they did a sonogram, then an MRI, then an EUS. Then my LFT's came back normal, and it all stopped.

If you had ERCP, I think they probably have a good idea what it is. Ask them.
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*diagnosed 2008 when I underwent emergency surgery;
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**Staying on Humira for maintenance**

The statistics I see so far for my situation seem pretty good. There ARE long term statistics for the Anti-TNF drug treatments now. I'm here to make them longER.
04-06-2012, 05:01 AM   #8
AngieFevo
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Thank you. I have now had the stent out from my bile duct, so I will wait and see what happens next. If I get more pain I will ask about being tested for PSC.
09-30-2012, 07:02 PM   #9
leslie1760
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I was dx;d with crohns in 2006 and in april 2011 was dx'd with Primary sclerosing cholangitis. I have been hospitalized numerous times since and had 4 ercps done to dialate my bile ducts and clean everything out.I recently just got out again this month for an 8 day stay for active crohns and had another ercp done. There is no cure and treatment is liver transplant once your meld score is high enough. Before i was dxd with PSC i had never been in the hospital for my crohns other than the ER and when they found my psc i seem to do a week long or more stay every 3-6 months. I did a week in april of 11,week in july of 11,week in sept of 11, week in jan of 12,week in sept of 12. The hospital workers in the lab and xray know me by name now and the nurses on the floor im always on know me by name also..They now give me a private room automatically because they know my situation and how long i will be there.I am supposed to call my gi doc back tomorrow because of some issues i have been having with pain and they cant figure out what is causing it so i am supposed to be having a small bowel follow through and the pill cam next to check the part of my small bowel that they can't see during colonscopy or endoscopy.
10-02-2012, 03:37 PM   #10
highlandsrock
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I was an emergency admission to hospital at the end of May this year vomiting blood. The upper GI endoscopy showed oesophageal varices and the consultant suspected PSC. I've since had an MRI scan which shows an enlarged spleen but the liver appears to be homogeneous with no signs of the cirrhosis so the PSC has now been changed (downgraded?) to PVT.

I've now been referred to a liver specialist who suspects that the PVT goes back to 1979 when I had a hole in the gut and it leaked into my abdominal cavity resulting in peritonitis. It's been laying dormant all this time. I've been put on beta blockers and I'm currently having variceal banding sessions. In November I'm having a fibroscan (one test I haven't had before) which is a non-invasive alternative to the usual needle biopsy on the liver.

If you Google PSC/Crphn's or PVT/Crohn's you will find that there are quite a few references to the link between the two but it is quite rare. Just our luck!
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