Hello! My husband was diagnosed officially with U.C. in 2011 and PSC in Feb 2016. His UC causes issues sometimes, which needs prednisone/meds (just a couple of times in the last 6 years). His PSC has been asymptomatic for most of the time.
Beginning in February of this year, his liver numbers began to rise, specifically his ALP (from 636 in Feb to 844 in June down to 729 last week). His ALT and AST did as well but his bilirubin never went over 1.2. From my research, it seems they don’t seem to worry as much about these numbers, but I can’t imagine it’s good for the body/liver/ducts after this long of a period of time. He doesn’t take any meds for his PSC.
Two weeks ago this Wednesday, he finally had an ERCP (first one). He had an MRCP a month or so before and they couldn’t “see” the common bile duct. The ERCP doctor took a look before he did the ERCP and said he could see it just fine but it was pretty narrowed.
The ERCP was done and there was a dominant stricture in the CBD along with some other minor narrowings in both L/R intrahepatic ducts. The doctor said his dilation wasn’t that bad. The 2mm camera couldn’t get through it and when they shot the contrast, some went up into the pancreatic duct. Thankfully, he didn’t develop pancreatitis.
They put a 5 Fr by 9 cm stent “9 cm into the right hepatic duct”. I’m not sure how large 5 fr is, but 9cm is longer than I expected. lol When he showed me the pictures, I couldn’t believe how small his CBD is. (He told me normal sizes are between 5mm-7mm.) The whole thing is the same size and it’s barely bigger than the stricture itself.The report said “main bile duct contained a diffuse irregularity and was of very small caliber–2mm maximal diameter”. Even with the stent, I can’t imagine it being opened up that much more. He’ll have it removed this coming Wednesday (exactly two weeks later). Hoping and praying it stays open. <3
Hubby does remember before the stent was put in that he couldn’t eat a lot and now his appetite is back again (since the stent was put in). Beyond that, he never had any symptoms (no itching or pain). Most of the time, if he has pain or discomfort, he usually blames it on the UC anyway. lol
He did get a fibroscan done and he has mild fibrosis, which isn’t too bad, I don’t think. Better than cirrhosis. They did a brushing and FISH as well. We’ve not heard those results, but I assume if it was bad, we’d have heard by now.
So, question, is it unusual for a long stent to be put in like his? I understand PSC causes narrowing of the ducts, but is this much narrowing common or just inevitable? The doc said there isn’t much they can do for him except make him as comfortable as possible. (yes, he said that, otherwise, he was super nice and answered all of my questions…I think I’ll keep him anyway). Of course, that seems like he’s on death’s door step, which we all know isn’t necessarily true. Anything can happen.
Also, the report said “the sphincterotome could not be passed through the stricture-too tight”. Does anyone know what that means? They made a 9mm biliary sphincterotomy, but I thought that was to put the stent in. (More questions to ask on Wednesday, I’m sure.)
Otherwise, we’re doing good. We have two kids: 10-year-old girl and 7 (almost 8) year-old boy who keep us very busy.
Thanks for listening to my rambling! Can’t wait to get to know more people who understand (because it’s real hard to find people who get it) and are willing to listen.