Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 > > I have varices and am having problems and I have a blood clot in one one of my ducts that is being monitored. > I am interested in symptoms or problems others are having and what medicine they are on. ============================ Hi Ellen -- I'm a bit puzzled. You have a clot in one of your bile ducts???? I have varices also and have multiple, extensive bloodclots in the veins leading to the liver (mesenteric, splenic, and portal veins) which are being monitored. The hepatologist told me that clots like mine are a very rare complication of PSC and would prefer that I be on coumadin. However, since I'm having to go in and out of the hospital for banding the varices (not to mention bouts of cholangitis), my GI and I aren't really keen about the idea of stopping and starting the coumadin since it's so hard to get stabilized. I've had 9 varices banded so far and have more yet to go. Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Hi Ellen, I have only had a firm diagnosis for the last two months, but I’ve been having trouble for maybe 12 years. Starting with high liver enzymes, and then 5 years ago started having periodic high fevers and chills. 3 years ago I had an operation to create a new common bile duct because they couldn’t even get a stint in mine. More fevers after a few months, and they put me on antibiotics one week a month to keep infections away. Finally, last April, they put in a bile drainage tube that runs across my liver, and put me on the transplant list. I was on Ursodiol but had strong side effects and the dr put me on a Phenobarbital just before bedtime to keep the bile thin enough to drain into the tube. I’ve had a couple of mild infections since the tube – but no real doozys. I take protonix for reflux. Celebrex for arthritis. Norvasc for high blood pressure. Wellbutrin because I started it when my husband died and they won’t let me phase it out. Other than that, I’m trying to remember to take my vitamins and eat healthily, though my sweet tooth has really been ruling the roost lately. You will find that the people here are a font of great information and caring. Nita From: [mailto: ] On Behalf Of Ellen Sent: Saturday, January 10, 2009 6:12 PM To: Subject: problems of PSC Hi! I'm new to this but I'm hoping it will be helpful. I've had PSC for 11 years and really haven't had any problems until the last 3 years. I have varices and am having problems and I have a blood clot in one one of my ducts that is being monitored. I am interested in symptoms or problems others are having and what medicine they are on. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Hi Ellen, I have only had a firm diagnosis for the last two months, but I’ve been having trouble for maybe 12 years. Starting with high liver enzymes, and then 5 years ago started having periodic high fevers and chills. 3 years ago I had an operation to create a new common bile duct because they couldn’t even get a stint in mine. More fevers after a few months, and they put me on antibiotics one week a month to keep infections away. Finally, last April, they put in a bile drainage tube that runs across my liver, and put me on the transplant list. I was on Ursodiol but had strong side effects and the dr put me on a Phenobarbital just before bedtime to keep the bile thin enough to drain into the tube. I’ve had a couple of mild infections since the tube – but no real doozys. I take protonix for reflux. Celebrex for arthritis. Norvasc for high blood pressure. Wellbutrin because I started it when my husband died and they won’t let me phase it out. Other than that, I’m trying to remember to take my vitamins and eat healthily, though my sweet tooth has really been ruling the roost lately. You will find that the people here are a font of great information and caring. Nita From: [mailto: ] On Behalf Of Ellen Sent: Saturday, January 10, 2009 6:12 PM To: Subject: problems of PSC Hi! I'm new to this but I'm hoping it will be helpful. I've had PSC for 11 years and really haven't had any problems until the last 3 years. I have varices and am having problems and I have a blood clot in one one of my ducts that is being monitored. I am interested in symptoms or problems others are having and what medicine they are on. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Hi Ellen, I have only had a firm diagnosis for the last two months, but I’ve been having trouble for maybe 12 years. Starting with high liver enzymes, and then 5 years ago started having periodic high fevers and chills. 3 years ago I had an operation to create a new common bile duct because they couldn’t even get a stint in mine. More fevers after a few months, and they put me on antibiotics one week a month to keep infections away. Finally, last April, they put in a bile drainage tube that runs across my liver, and put me on the transplant list. I was on Ursodiol but had strong side effects and the dr put me on a Phenobarbital just before bedtime to keep the bile thin enough to drain into the tube. I’ve had a couple of mild infections since the tube – but no real doozys. I take protonix for reflux. Celebrex for arthritis. Norvasc for high blood pressure. Wellbutrin because I started it when my husband died and they won’t let me phase it out. Other than that, I’m trying to remember to take my vitamins and eat healthily, though my sweet tooth has really been ruling the roost lately. You will find that the people here are a font of great information and caring. Nita From: [mailto: ] On Behalf Of Ellen Sent: Saturday, January 10, 2009 6:12 PM To: Subject: problems of PSC Hi! I'm new to this but I'm hoping it will be helpful. I've had PSC for 11 years and really haven't had any problems until the last 3 years. I have varices and am having problems and I have a blood clot in one one of my ducts that is being monitored. I am interested in symptoms or problems others are having and what medicine they are on. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 > > > > I have varices and am having problems and I have a blood clot in one > one of my ducts that is being monitored. > > I am interested in symptoms or problems others are having and what > medicine they are on. > ============================ > > Hi Ellen -- > > I'm a bit puzzled. You have a clot in one of your bile ducts???? > > I have varices also and have multiple, extensive bloodclots in the > veins leading to the liver (mesenteric, splenic, and portal veins) > which are being monitored. The hepatologist told me that clots like > mine are a very rare complication of PSC and would prefer that I be on > coumadin. However, since I'm having to go in and out of the hospital > for banding the varices (not to mention bouts of cholangitis), my GI > and I aren't really keen about the idea of stopping and starting the > coumadin since it's so hard to get stabilized. I've had 9 varices > banded so far and have more yet to go. > > Regards, > Carolyn B. in SC > They haven't banded any of my varices. My GI doctor thinks they should but my specialist doesn't think it's necessary yet. I really confused about the blood clot. It showed up in a sonagram and they sent me to a group of hemotologist. One said a blood clot had passed, one said it was still there and another said veins has grown around it and it was stable. I go back to the liver doctor the end of this month. They did not want to put me on any blood thinners. Just said they would monitor it. What problems were you having before they banded the varices? Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 > > > They haven't banded any of my varices. My GI doctor thinks they should > but my specialist doesn't think it's necessary yet. I really confused > about the blood clot. It showed up in a sonagram and they sent me to > a group of hemotologist. One said a blood clot had passed, one said > it was still there and another said veins has grown around it and it > was stable. I go back to the liver doctor the end of this month. > They did not want to put me on any blood thinners. Just said they > would monitor it. > What problems were you having before they banded the varices? =============================== Ellen -- Generally, they don't band varices unless they are at a grade 3 (which mine were). I think most likely your blood clot is in the portal vein (that's the most likely spot) and the veins that have grown around it are called collateral veins. Collaterals tend to form in any part of the circulatory system where there is a blockage. This is a good thing! I would ask your drs. what grade your varices are; also, ask them just where your clot supposedly passed to! They discovered my clots and varices this past April when I was in the hospital for a particularly rough bout of cholangitis. After further tests and monitoring, they banded 4 varices in early October and 5 in early November. I have more which need to be banded but I'm trying to wait until flu season is over before going back to the germ factory (hospital)!! By the way, I've had PSC at least since 1993 that we're sure of. My meds include Xifaxan for the hepatic encephalopathy (this drug also put my Crohn's in total remission ... that's the kind of side effect I like!), Asacol for the Crohn's, Protonix for GERD, Singulair for asthma and Elavil for fibromyalgia. I asked the drs if these clots could break loose and do any damage elsewhere and they assured me that with my level of cirrhosis, there's no way those clots will ever work their way through my liver! There's always a silver lining to everything, if you just look hard enough. Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 > > Wow! you have so much information. My varices are 2. Did you ever > have spasms in the esophogus? > > When did you find out you have fibermyolgia? I just went to the dr. > because my hips and legs ache all the time. ==================== Ellen -- Yes, esophageal spasms are just part of the territory that comes with all this! I've had them for at least 6 years. Generally speaking, anything really cold will set them off big-time, so watch the ice cream & sherbet! Fibromyalgia -- I was diagnosed in 1990. I also have spinal stenosis and some mild peripheral neuropathy. The big problem with fibro is that when you get those varices banded, you will hurt far, far more than the average patient. Each time, I've had to be on Lortabs for about 10 days following each banding procedure. The pain was waaaaaay more intense than the pain when my gall bladder went bad (by the time they figured out the problem, the gall bladder was beginning to go gangrenous). Others in this group have had minimal pain with the esophageal banding. I know that Ken Henshaw was able to eat fast food hamburgers within hours of his, whereas I couldn't tolerate even soft solids (pudding, grits, scrambled eggs) for a week, and even liquids were excruciating. Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 > > Wow! you have so much information. My varices are 2. Did you ever > have spasms in the esophogus? > > When did you find out you have fibermyolgia? I just went to the dr. > because my hips and legs ache all the time. ==================== Ellen -- Yes, esophageal spasms are just part of the territory that comes with all this! I've had them for at least 6 years. Generally speaking, anything really cold will set them off big-time, so watch the ice cream & sherbet! Fibromyalgia -- I was diagnosed in 1990. I also have spinal stenosis and some mild peripheral neuropathy. The big problem with fibro is that when you get those varices banded, you will hurt far, far more than the average patient. Each time, I've had to be on Lortabs for about 10 days following each banding procedure. The pain was waaaaaay more intense than the pain when my gall bladder went bad (by the time they figured out the problem, the gall bladder was beginning to go gangrenous). Others in this group have had minimal pain with the esophageal banding. I know that Ken Henshaw was able to eat fast food hamburgers within hours of his, whereas I couldn't tolerate even soft solids (pudding, grits, scrambled eggs) for a week, and even liquids were excruciating. Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Back problems - if there's a mechanical problem, cortisone injections won't help. It WILL help with inflammation. I had back surgery 12 years ago to correct bone overgrowth impinging my sciatic nerve. I still bale hay, so it must have worked I doubt if cortisone treatment (especially local injections) have any relationship to PSC. Although PSC is considered to be an autoimmune disease, steroid treatment has shown to be ineffective. Arne > > I go today for a MRI of my back. I have been having extreme leg and > hip pain. They want to check the stenosis. Have you ever had the > cortisone injections. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Back problems - if there's a mechanical problem, cortisone injections won't help. It WILL help with inflammation. I had back surgery 12 years ago to correct bone overgrowth impinging my sciatic nerve. I still bale hay, so it must have worked I doubt if cortisone treatment (especially local injections) have any relationship to PSC. Although PSC is considered to be an autoimmune disease, steroid treatment has shown to be ineffective. Arne > > I go today for a MRI of my back. I have been having extreme leg and > hip pain. They want to check the stenosis. Have you ever had the > cortisone injections. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 I also have Fibro along with degenerative disc and joint disease. Cortisone injections have helped me a lot with the pain. I am 40 years old so they don't want to operate on most of my joints yet, though they did have to fuse some of my cervical spine last year. The cortisone really helped last year when I tore my rotator cuff and when I get flare ups of Bursitis in my hips. Some times the inflamtion there gets so bad that I cannot stand to have pants on and can only ware skirts. My otho is cautious in giving them to me because he says I can only have them so often in the same area. I also have stenosis at L 4/5 & s/1 and the lower thorasic vertabrea and c 2/3 (they fused C4-6 when I completely lost the discs). I have never had corticone injections for them. Just physical therapy and I have a heated matress pad that has helped a lot so that I am not so stiff in the mornings. Good luck. > > > > I go today for a MRI of my back. I have been having extreme leg and > > hip pain. They want to check the stenosis. Have you ever had the > > cortisone injections. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 I also have Fibro along with degenerative disc and joint disease. Cortisone injections have helped me a lot with the pain. I am 40 years old so they don't want to operate on most of my joints yet, though they did have to fuse some of my cervical spine last year. The cortisone really helped last year when I tore my rotator cuff and when I get flare ups of Bursitis in my hips. Some times the inflamtion there gets so bad that I cannot stand to have pants on and can only ware skirts. My otho is cautious in giving them to me because he says I can only have them so often in the same area. I also have stenosis at L 4/5 & s/1 and the lower thorasic vertabrea and c 2/3 (they fused C4-6 when I completely lost the discs). I have never had corticone injections for them. Just physical therapy and I have a heated matress pad that has helped a lot so that I am not so stiff in the mornings. Good luck. > > > > I go today for a MRI of my back. I have been having extreme leg and > > hip pain. They want to check the stenosis. Have you ever had the > > cortisone injections. > Quote Link to comment Share on other sites More sharing options...
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