Hello all. Perhaps some of you can shed some light on what I am feeling. I believe mine is considered secondary sclerosing cholangitis from a botched gallbladder surgery last July 2011. I have been in the hospital now 15 times, one of which was ankle fractures, the rest, biliary related. I've had drainage bags, stent after stent after stent, ampulla of vater stenosis, dilated common bile duct, dilated pancreatic duct, sepsis, elevated ammonia levels, and what I think I'm feeling is severe twisting of the bile ducts now. I always felt the twisting, but these are like lightening bolts, just jabbing stabbing pain that doubles me over on the side. I also have SOD since they have done so many sphincterotomies, but I'm sure, like the rest of you, there are so many symptoms, I can't tell what's what any longer. Anyone experience these symptoms? I'm on so many medications and constant antibiotics, my body is exhausted.
I had to look up secondary sclerosing cholangitis and there are many causes of it - one being surgical trauma. Perhaps some PSC patients have had some of the symptoms and treatments you have had. Is there any surgery that could correct the damage done? Did you have laparoscopic or open gallbladder surgery? Are you seeing a hepatologist or a gastroenterologist? Or both? Have you had a liver biopsy? I think after 15 hospitalizations in 18 months, I'd be completely exhausted, too. I only experienced that type of pain (though I didn't describe as twisting pain) on my initial bout of cholangitis, long before they knew what was going on with me. A gallbladder surgery actually helped me and helped point the doctors toward liver disease of some sort. A biopsy was done at the time of the GB surgery because the surgeon had the presence of mind to call the Liver Team mid-surgery and they asked him to do a biopsy then. It took 8 more months and 3 ERCPs to get a definitive diagnosis of PSC. I'm sorry for what you're going through. I hope you get referred to someone who can provide more overall treatment of your condition. -danabee
It appears that mostly SSC comes from surgical trauma, and since they hacked up my CBD at the initial gallbladder surgery, that's where the problems started. My first stent was placed 3 weeks after my surgery due to a bile duct leak, which now we are almost certain was a nicked distal common bile duct at initial surgery. That stent rotted and my CBD closed shut b/c I then fractured both ankles and they would not transport me to get the stent removed. Then, in November of 2011, the stent was removed (with difficulty), and a new one had to be put in. I ended up three hours later with bacteremia from the rotted stent. The bile duct leak was fairly large sized and required a drainage bag which they didn't put in until December!!! I went with that bile duct leak for almost 6 months! I've had ERCPs and now am going to see the chief biliary specialist there on 10/22/12 for exploratory ERCP b/c he thinks that there's more going on than just the CBD. I could only describe the pain as sort of lightening bold or zapping in nature, the kind that doubles you over and you saw 'OWE!' They are really quick stabbing sharp pains. Then they die off some. I've been on constant antibiotics since July of this year. My CBD is now over 12 MM in width. I suppose that's a little too large! I also have other weird symptoms of daily low grade fevers that can go up over 100, and when these attacks come on, my ankles and feet swell so bad, I've got like 6+ pitting edema in the morning even before I get out of bed. This to me would be liver related, although I'm not certain. I've lost count, but I think this will be my 7th or 8th ERCP. Lisa
Gosh Danabee, this sounds horrible. I feel very bad you are going through all this. My PSC did not cause any of these conditions. I had my gall bladder removed, like you did. I was told that the gall bladder disease and Ulcerative Colitis were produced by PSC, not visa versa. I also had a Splenamegly (enlargaged spleen), portal hypertension, varicies that needed banding periodically and I was on 23 medications right up to when I got transplanted. Fatigue was huge. muscle and tissue loss got bad in my latter stages of PSC. My transplant cured all those things. I pray for you to get transplanted and have your health restored, too. Hold to the truth that you will be better some time soon. It has great power on how you get victory over PSC or SSC, whatever the it is.
God bless you and keep you.
Paul Hain said:
Gosh Danabee, this sounds horrible. I feel very bad you are going through all this. My PSC did not cause any of these conditions. I had my gall bladder removed, like you did. I was told that the gall bladder disease and Ulcerative Colitis were produced by PSC, not visa versa. I also had a Splenamegly (enlargaged spleen), portal hypertension, varicies that needed banding periodically and I was on 23 medications right up to when I got transplanted. Fatigue was huge. muscle and tissue loss got bad in my latter stages of PSC. My transplant cured all those things. I pray for you to get transplanted and have your health restored, too. Hold to the truth that you will be better some time soon. It has great power on how you get victory over PSC or SSC, whatever the it is.
God bless you and keep you.
Does anyone experience those stabbing pains, like piercing, intermittent RUQ (almost like electricity), and it's the kind that makes you actually say "OWE!" I don't know much about secondary SC, but it appears very much similar to PSC. What are typical symptoms with PSC? I usually run a low grade fever every single day, 99.5 to 100.1 and I have night sweats. That piercing pain just started up a few days ago, so I'm guessing by now, my bile ducts is over 12 mm. I have patiently waited to go to Cedars Sinai now since May and am finally going to be on maybe my 8th ERCP. They are also going to do manomotry on me, and that scares me. This ERCP will go further down into the biliary tree, which scares the heck out of me as well, b/c apparently, the specialist believes the nick or cut is further into the distal CBD. I have malabsorption, severe diarrhea, floating poos, you name it. I believe I, too have ulcerative colitis, but I've never been dx'd with it. I do know that when I was dealing with the very bad bout of ammonia, I passed what appeared to be these huge white cysts. I know it's gross, and I'm sorry, but I'm not getting much information from any other source, so your thoughts are much appreciated. Oh, and my lipase is almost 0, so that's a problem in my eyes. Lisa