I've recently had my 10th ERCP and believe before I've written about sclerosing cholangitis. My symptoms change from day to day, but I am now feeling extremely sharp stabbing pains on the right upper quadrant, these have been waxing and waning, as well as ongoing fullness there and inflammation and swelling. I'm starting to see that my upper abdomen is very swollen and I have large veins popping out of my right side of my abdomen. Anyone explain these symptoms? What keeps the cholangitis at bay? I've on so many medications now just to keep the symptoms at bay, that I can hardly keep track any longer. The pain is unremarkable and never goes away.
Hello USUFan
I had stabbing pains for over three years. Many times I could not even stand up. My doctor said it was the membrane around my liver contracting and expanding. It wasn't until I was rushed to the ER that they discovered that I had a gallbadder infection. Normanly they would just remove the gallbadder, but he didn't want to open me up and take the chance of infection. It took a 3 week hospital stay to clear it up. That was almost a year ago. Have not had any stabbing pains since.
Swollen abdomen? Has anyone mentioned ascites to you? Have you cut salt from your diet? Are you taking any diuretics? I'm taking Spironolactone and Furosemide. You will be in the bathroom a lot but it can help with the ascites.
Cholangitis at bay? I've had stents placed in my bile ducts twice (they can only stay in for a week). It did give me some temporary relief.
I hope this helps you and maybe gives you a direction to go in. God speed.
I've had now 4 stents over the past year (I believe it was four, could have been more - cannot recall). The last ERCP that was done was to clean up scar tissue at the ampulla, manomotry, balloon sweep (dilate) the bile ducts, and there was extensive bile acid in my stomach. It seems that these ERCPs are only a temporary fix. I'm worried about the veins coming through on the sides of my abdomen, thick blue veins. My gallbladder is out, so I presume this would be secondary sclerosing cholangitis.
Sorry to here that you are having so much trouble, OSUFan,
The veins popping out on the wall of your abdomen is a common sign that you have portal hypertension, meaning the venous blood can’t easily make it through your scarred liver. So, it finds a way to get back to your heart through the skin of your abdomen. I have the same problem. I agree that limiting salt intake and a diuretic may be helpful. I also take a beta blocker that helps prevent bleeding from varicies (dilated vessels in your esophagus) which frequently accompanies portal hypertension. I had an episode a few months ago when my bowel movements turned black (melena) from this problem. Dr. said get to ER ASAP and I had a procedure done to prevent more internal bleeding.
Wishes for improvement for you!
EAD3
Sounds like a definite call/visit to your hepatologist ... or gastroenterologist, whichever specialist you see for the PSC. These symptoms are not to be ignored. I think the veins popping out on your right side are not a good sign at all, especially combined with the pain.
EAD3 gave good feedback! Fiancé’s feet and legs began to swell in the evenings. We took the issue to our Gastro doc, who sent us to our Hemat doc, who sent us to our general doc… (Story of our life.) All spoke of issues within the veins. After placing phone books under the foot of the mattress, drinking more electrolytes, changing socks and monitoring salt intake that much more, his swelling decreased. I don’t think it was anything we did that “cured” my fiancé’s swelling. I think the symptoms were just a sign of what’s to come. The docs said they could write more meds into the picture but we opt’d out of until they truly necessary. He’s also had a handful of ERCPs. Stents placed and removed monthly it seems. Blood tests show liver function is worsening BUT we’re alive and that’s a blessing!
My veins are not to the point they are bulging yet, but they are very large and blue and show right through the abdomen on the right side. These veins then travel downwards at an angel towards my belly button. My GI doctor said it was from weight loss, but I'm sorry, it's all too coincidental that this is now coming out. How do people get portal hypertension? I'm also experiencing a tremendous amount of bile acid, which I'm being treated for, but have to go in for impedence testing and manomatry, tube through the nose to the stomach, etc. Yuck. Personally, GI doctors have no business consulting on biliary issues in my opinion.
Hi OSUFan,
Here is a link where you can read about this condition:
http://www.wisegeek.com/what-is-caput-medusae.htm
Your doctor is partially right in the weight loss does make it easier to see the "Caput Medusa" because of less fat just under your skin.
Portal Hypertension can be treated with a Beta Blocker medicine, which has helped me keep my head above water (and ascites)!
Stay Healthy and as fit as you can!
EAD3
EAD3,
So, why doesn't the article mention that cirrhosis of the liver is a cause (and a major cause) of portal hypertension? That's what causes the backup of blood into varices that form in the esophagus and stomach. Most people with PSC and resultant cirrhosis (almost all, really) have portal hypertension to some degree or other.
And OSUFan, I am in total agreement with you about GI docs consulting on biliary issues, most specifically a disorder of the bile ducts like PSC. Unless he or she has done a fellowship in hepatology and has a LOT of PSC patients in his or her practice. Not even all hepatologists are equal in this matter - you need to find one with a lot of experience and knowledge about PSC. It's a tricky little monkey!
Beta blockers don't work for me because I have asthma - I told one hepatologist this and he still wanted me to try the beta blocker. I did - for 3 days. And my sister and her husband who I was living with at the time both asked, what the hell is going on with you? I was acting goofy and wasn't making sense. So not all drugs fit all people. I have never had ascites but my hep. started me on furosemide and spironolactone almost right away. I don't understand doctors that try to treat a repeatable situation like swelling and ascites with "natural" methods when it's a really toxic and even life-threatening condition. It's only going to return. It has to if you have portal hypertension. I get really irritated when I hear about bad doctoring. There are too many good doctors. Even my internist would beat that GI - hands down.
My 2 cents,
Danabee
Yes, Danabee, the article is somewhat limited in its scope and you are absolutely correct that advanced cirrhosis causes portal hypertension because the liver is so scarred that venous blood from the intestines can't easily return to the heart through the portal vein to the liver. Thus, the pressure in the hepatic (portal) vein goes up and the venous blood has to find other pathways back to the heart. One them happens to be the wall of the stomach causing the "Caput Medusa," which is ugly cosmetically, but usually not serious. Another is fluid leaking through the backed up veins, causing ascites (swelling and distention of the abdomen). Hemorrhoids are another route. Esophageal varices, however, may be the worst - we all should be aware that black tarry bowel movements, or vomiting blood or stuff that looks like used coffee grounds, are go to the hospital ASAP serious!
It is easy to assume we all have the same knowledge base, but that is very difficult to judge. We all should be trying to catch each other up with what we have learned about this difficult and oh so challenging disorder! And trying to understand these distressing changes in our bodies and life style. Every little piece of information we add here may be helping someone with PSC understand it better and, in some instances, save people from learning things the hard way!
Fight to stay healthy, all!
EAD3
Yes, EAD3, exactly re the portal hypertension. And I did have to make the trip to the ER with the black tarry stools - that just wouldn't quit. Without throwing up blood, which didn't happen till much later, you may have little sense of what is going on. And this is precisely the FIRST sign of shock (blood loss) - you stop having good mental judgment because your brain is very rapidly losing precious oxygen from lack of blood supply to it. The very first sign of shock is disorientation, dizziness, confusion. I had to have my hepatology nurse tell me, Get to the ER right now, Dana, because you are bleeding. You have to go now. And I still wanted to whine about having to go. And I had no clue till that incident what the hell esophageal varices were or how they formed or that they were a possibility. Nada. It was no one's fault. But it is a malicious, sneaky disease with many odd complications. It takes years to learn basic knowledge and there remained with me for a long time a sense of unbelief that I had this disease. I just couldn't grasp it. And doctors would say, oh, this is a bad disease to have. But they didn't really say why. A layman's book about liver, liver functions, and liver diseases? Sorely needed.
By the way, I was trained as an EMT and the main focus of the whole 6-month course was recognizing signs and symptoms of shock. I used to teach it in a pediatric first aid class for 4 years. But when it's your own shock going on - twice in my life it's happened to me, and both times it turned me into Major Stupid. Which is just the first clear sign of blood loss going on somewhere - dehydration, an internal bleed, extreme hives (body fluids go external), and the clearest of all - loss of blood to the environment through an injury or vomiting. So, go to the ER if you have black tarry stools and you're getting really Stupid and confused and maybe a little dizzy...
I hit the nail on the head when I said my GI doctor shouldn't be even remotely counseling on biliary issues. I am a little chubby and haven't lost that much weight to cause such large dilated veins, although they are not necessarily bulging yet, but you can sure see them, and when I went to my internist, she right away put in an order for US of the abdomen. I have also noticed that around my belly button, I have this little rash like thing going on -- almost like a tiny little shingles, but sort of acne sores, and then I see these little red spots on my abdomen or breasts, they are just the size of a pin head. I don't have the veins bulging out around my belly button, which my GI said was a sure sign of cirrhosis, and he said my labs didn't warrant any further testing at this time of that. You can see these veins running down from the liver definitely. They are a few millimeters in width, maybe 2 or so. I also have to have impedence testing and esophageal manomatry done now for bile acid, which is the worst.
Again, I detest Stupid Doctors and that's what I call this so-called specialist you see. Do listen to your internist - she sounds smart and she acts like a knowledgeable professional.
As for the rash, I developed what's called lichen planus, a rather harmless and self-limiting (it goes away with proper treatment - steroid cream - within 6 months to 4 years - that's the full range I've heard and read). Your description sounds very much like it. It's another autoimmune disorder and once you have one, like PSC, you tend to get others. It usually is very itchy but is controlled with the steroid cream within a couple of days.
In the meantime - get thee to a Real Doctor!!! And avoid Stupid Doctors at all costs!
Dana
Hello, OSUFan1965.
We saw our Hepa doc for the little red pin head spots you're talking about. It goes hand in hand with the veins having too much pressure in them. I don't have the doctor verbiage in front of me. (It gets so confusing at times I have to take notes on everything.) I'll try to find them for you and get back to you with an 'official response' but I did want to just say, our doctor told us they were nothing to worry about. Cosmetically he could refer us to dermatology and they could zap them for us if they bothered us that much. The belly button protruding is another subject though. Swelling in the abdomen needs to be watched. How did the results of your abdomen order look?
-G