Primary Sclerosing Cholangitis

Question: ulcerative colitis and primary sclerosing cholangitis? how likely is it that my children will have problems if my future husband has these diseases? should i not have children with him? he might not even live long enough to see them in college anyway. i don't know what to do. he always talking about having children with me in the future but i just dont know if it's a good idea.

Answer: There is a genetic link, but the risk to your future children is actually quite low. About 1 in 100 of the population have ulcerative colitis (UC). If you have a relative with the condition, this goes up to about 3 in 100 (3% chance). Even among identical twins (who share identical genes), where one twin has the disease, only 6% of the "normal" twins went on to develop the ulcerative colitis. Most people live reasonably normal lives with UC and surgery to remove the large bowel can cure the disease if it can't be managed with medication. Primary sclerosing cholangitis is a much rarer disease, but people with colitis are known to be at higher risk. The outcome for this condition tends not to be so good, with most people developing liver failure after about 10 years and needing a liver transplant. The genetic risk of this condition for any future children would be very small but the disease itself and/or the implications of a liver transplant could possibly affect fertility. Hope this helps.

Question: Primary Sclerosing Cholangitis, due to Ulcerative Colitis, anyone got it? Any tips on how to manage it? I was diagnosed just last year. Not on any meds yet, but I have seriously cut down on my drinking.

Answer: Wikipedia provides a good place to start http://en.wikipedia.org/wiki/Primary_scl…

Question: primary sclerosing cholangitis? How can we prevent primary sclerosing cholongitis , and what is its brognosis ? Thanks will y I'm a medical student too ( 1st year ), I have to do a report on this disease. thanx Sumanitu Taka

Answer: Prevention It is not possible to prevent PSC because the cause remains unknown. Liver damage and cirrhosis is often presumed to be caused by drinking too much alcohol, however PSC is not related to alcohol in any way. Current evidence suggests that the disease may be triggered by an unknown bacteria or virus in people who are genetically programmed to get the disease. The common viruses known to cause hepatitis have not been associated with it. The frequent occurrence of PSC in association with inflammatory bowel disease suggests that a common cause for both diseases may exist or that the inflamed colon allows toxins or infections to be absorbed into the body and this can cause the bile duct inflammation. The disease affects both genders, although two male patients are affected for every female patient. It can affect all ages, but it is most commonly found in young adults. Prognosis and Treatment Usually, primary sclerosing cholangitis worsens gradually. Liver failure occurs about 12 years after the disorder is diagnosed. The drug ursodeoxycholic acid may help relieve itching. Recurring bacterial cholangitis is treated with antibiotics Blocked ducts can be widened (dilated) during ERCP. Sometimes tubes to keep the ducts open (stents) are inserted temporarily. Liver transplantation (see Transplantation: Liver Transplantation) is the only treatment that prolongs life. It can cure some types of this otherwise fatal disorder. People with cirrhosis that causes serious complications or those with recurrent bacterial cholangitis may require liver transplantation. If cancer of the bile ducts develops and surgery to remove the cancer is not possible, stents may be passed through an endoscope and placed in bile ducts that are blocked by the cancer. These stents open the ducts.

Question: primary sclerosing cholangitis progression? liver cancer and rectal cancer. What are progession signs?

Answer: If the person you are asking about has both primary sclerosing cholangitis and rectal and liver cancer then the prognosis is not good. PSC is not cancer but the combination of the two diseases carries a poor prognosis. Scroll down for the section on PSC and colon cancer http://www.emedicine.com/ped/topic1895.h… Symptoms of progression would be the same as for advanced cirrhosis in combination with liver cancer - ascites, swelling, potential bowel blockage, malaise. good luck

Question: what is primary sclerosing cholangitis?

Answer: very serious disease of the blood vessels in the biliary tract, ie. connection btn liver-gallbladder-bowel. the blood supply to those areas is threatened and can cause necrosis (meaning tissue dies off). this needs to be seen by a general surgeon asap!

Question: My boyfriend has ulcerative colitis and primary sclerosing cholangitis.. along with bipolar.? i'm 19 and he is 21. he recently got diagnosed a few months ago and our relationship has been more stressful than ever. stress is normal in a time like this but i don't know if i should spend the rest of my life with him. i was planning on marrying him, but everyone tells me that would not be a good idea because i am young and i will most likely outlive him.... also, my children might come out with problems too. i love him and i feel i should stay with him and take care of him. i love him but people tell me love isn't enough and sometimes i have to think with my head and not my heart??? what happened to 'through sickness and through health..." maybe i'm just naive.i don't know what to do. anyone have some good advice?

Answer: Hopefully, deep down you know the answer to this one yourself, and, whatever your decision, I think it can only come from within yourself. Whatever happens, you must never stay with someone out of guilt or pity - that can't end well for either of you. You are very young to be thinking of marriage, regardless of all the medical stuff going on - you have lots of time to decide and "take care" of him if you want, without commiting to marriage or children. My brother's wife is schizophrenic and their son has colitis and I can tell you it is has been a difficult and sometimes lonely life for many years, though I don't think he would ever dream of leaving.

Question: Do patients with Ulcerative Colitis have faster progression of Primary Sclerosing Cholangitis? My husband has just been diagnosed with PSC. He has had UC for over 10 years. In December 2007, routine blood tests found increased levels of billirubin among other discrepancies and he displayed jaundice so the doctor ordered extra tests in the ensuing months. He was taken off Azathioprine around March with no change in blood tests. Then he had an MRI and a liver biopsy only a couple of months ago and both returned negative results so we were at a loss as to the cause. A different doctor put him on Ursofalk and ordered another MRI and a CT which were performed a couple of weeks ago and it shows PSC with signs of cirrhosis already. I may not be a doctor but this seems like very rapid progression for a usually slowly progressing disease. Does the UC meds or history cause a quicker progression of the disease? What is the expected progression from here? Thank you :)

Answer: If your husband had PSC and has been diagnosed with cirrhosis of the liver...I would ask to be referred to a Hepatologist that is connected with a Transplant Center. Cirrhosis of the liver is a very serious disease, you can read about it here: http://www.emedicinehealth.com/cirrhosis… Let me explain this further: Usually liver disease starts out as inflammation of the liver cells. When the inflammation continues for a certain period of time, it can cause the death of the liver cells that form scar tissue inside the liver and this scar tissue blocks the flow of blood and nourishment and oxygen from reaching the healthy cells that are left and they can die also. When cirrhosis develops, they can only try to slow down the progression of the cells being destroyed. Some people can live for years with cirrhosis and others are not the fortunate and will advance in the disease much faster. PSC is an auto immune disease of which they have not found out the true cause of the disease and there is no cure. Usually, the bile ducts are twisted and strictured and cause the bile to back up into the liver and can cause liver damage. Ulcerative colitis is known to go hand in hand with PSC. I am posting a site on transplantation also. This is not to scare you, as you may not need this right away, but to help you if this disease keeps progressing: This site will tell you much that you need to know to have your husband evaluated to be placed on the transplant list. http://www.surgery.usc.edu/divisions/hep… The liver is a very quiet organ as far as showing signs or symptoms that something is wrong. It usually does not show these signs until the liver isn't able to perform the functions that the liver cells does, efficiently. Being jaundice is that first sign that usually appears. In some patients PSC doesn't progress fast, in other patients they can go into liver failure faster...it all depends on the patient themselves and how their chemistry is. I am posting this website that will inform you more about cirrhosis and people there are very caring and helpful to caregivers and each other. It is a group for people who have cirrhosis of the liver. You will find answers to your questions faster here and there are links you can go to from this site. The joining and posting on this group and everything is free. You can just read or post if you feel like it. http://health.groups.yahoo.com/group/liv…

Question: Was Walter Payton an alcoholic or was he ever heavily involved with alcohol? The late great, Walter Payton died of a rare liver disease called, "Primary Sclerosing Cholangitis". Does anyone or can anyone tell me if Walter Payton as ever involved with alcohol on a steady basis?

Answer: No, when it was disclosed that he and the disease the doctors even said that it was just a rare disorder and not caused by anything like drugs or alcohol. If he had been a heavy drink it would have taken much longer for the effects of alcohol to cause that much damage to his liver. His liver disease worked so quickly he didn't even have time to find a transplant, when alcohol is to blame it works very slowly over the course of many years. Don't listen to people who claim that he was a drunk because they're just making up lies about a man who was greatly admired.

Question: Is there a relation to celiac and Ulcerative Colitis? I have Ulcerative Colitis, Primary Sclerosing Cholangitis and now I'm looking at Celiac. My new doctor checked my B12 and Iron and I'm severly deficient. I had a test last Wednesday, but I removed Gluten from my diet after a lot of reading on the internet and I feet GREAT! I'm just wondering if there is a relation between the UC/PSC and the possible Celiac

Answer: They are both autoimmune diseases, and studies are pending. Go here: http://cat.inist.fr/?aModele=afficheN&cp… http://www.ncbi.nlm.nih.gov/pubmed/17918… I have heard that many people with Chron's and IBD have benefitted from a gluten free diet while not actually celiacs. My guess is that they are like my brother who is a non-allergic, non-celiac gluten sensitive. You might just have both Chron's and celiac.

Question: Does drinking too much diet coke or taking more than 2 tylenol a day harm your liver? I drink about 2 cans of diet coke a day and i am wondering if it damages your liver? i have spent hours looking for proof online about drinking diet coke but haven't found any. I am aware of how tylenol can adversly affect your liver but the docs have told me that it's the only thing i can take for pain (on top of that i am allergic to aspirin and ibuprofen) I had this rare liver disorder called "primary sclerosing cholangitis" (it damages the bile ducts and then causes liver cirrhosis and death unless you have a transplant) and was lucky enough to have had a liver transplant in december of 2001 after i was stage 3 for 4 years. Now i was diagnosed with another rare liver disorder called "primary billary cirrhosis" (it doesn't differ much from the first illness i described) Fortunately I am still stage one and have no or little symptoms. Maybe someone can tell more about the effects of diet coke or tylenol? (btw, I also drink plenty of juices and other things as well as soda). thank you

Answer: ouch, lots of misinformation in these answers. diet products are not harmful to the liver, and have not been proven to be harmful to human in any way (except those with phenylketonuria). the most common claim is that they cause cancer, which is false (see the link below). there is no way for them to "clog up" your body or urinary tract. you are right to be concerned with taking tylenol or any product containing acetominophen (many cold remedies have it). tylenol can be fatal to anyone if they take too much, and the cause of death is liver failure. you are definitely a special case, with multiple liver disorders AND allergies to other pain meds. you really need to call your gastroenterologist and ask them whta the maxiumum dose of tylenol you should have is. if the transplanted liver is functionally normally, you should be able to take it, although I can understand wanting to be extra careful with your gift.