Guest guest Posted April 5, 2009 Report Share Posted April 5, 2009 hello My husband was recently diagonesed with psc about a month ago. I have alot of questions for one before we got the diagonisis he was first diagonesed, with chrohns, then they took that back and said he had ulcerative colonitis, then they took that back now he has psc. The symptons were within the past year he dropped about 4o pounds, now i have been with my husband for 14 years and he has always been itching, so they said his enzymes were up we never thought much of the itching all these years.Another thing that makes our situation complicated is that as a child he was born with an enlarged liver and he was really sick from the age of 6 till about ten he used to throw up couldnt eat or anything then he was treated with predisone and everything stopped we cannot get hold of these earlier records because they did not keep records back then we are relying on his mom's memory so now during the past year his urine went from regular color to orange to that dirty color he had pancretis about 2 months ago so they removed his gallbladder, then they gave him and ercp they said the removed stones and slush and that's what caused the pancreatis, we came home only two weeks later and he was still throwing up and still sick we went back to the hospital and they did another ercp and said they had left some gallstones in there. The thing i don't understand is they say he has had liver disease for about 15 years but i thought you cannot survive past ten years. They have him on uradosil, pentanasa, cholestraynamine, asocal. He is always tired and he can only eat so much if he eats too much he throws up, and if he is not throwing up he is puping everything he ate he is weak he cannot gain any weight. Now his ankles, knees are swollen I dont know we go back to his doctor on the 17th of april, but i dont think they are getting right, i have made another appointment with another liver doctor, i would appreciate any suggestions or any feedback. My husband is 44 years old. lost and confused Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2009 Report Share Posted April 5, 2009 -Welcome to the group. It won't be long until people start chiming in. I'm sorry for your husbands' diagnosis, but happy you found this group. It sounds very classic PSC symptoms are effecting your husband. Reminds me a lot of my brother. My brother had the insentience itching for a very long time. It is very important that you trust your doctor. I can not stress that enough. PSC is a wacky enough journey without a doctor to trust. I would suggest going through some of the archives and absorbing all the information in them. Don't be afraid to ask questions, everyone in this group has had something similar in some way or another. in TexasTwitter Feed: tiffylee Caching as La Bella Mafia For my PSC crowd: Brother, , 32, UC & PSC, Liver tx 12-12-07Subject: New memberTo: Date: Sunday, April 5, 2009, 9:14 AM hello My husband was recently diagonesed with psc about a month ago. I have alot of questions for one before we got the diagonisis he was first diagonesed, with chrohns, then they took that back and said he had ulcerative colonitis, then they took that back now he has psc. The symptons were within the past year he dropped about 4o pounds, now i have been with my husband for 14 years and he has always been itching, so they said his enzymes were up we never thought much of the itching all these years.Another thing that makes our situation complicated is that as a child he was born with an enlarged liver and he was really sick from the age of 6 till about ten he used to throw up couldnt eat or anything then he was treated with predisone and everything stopped we cannot get hold of these earlier records because they did not keep records back then we are relying on his mom's memory so now during the past year his urine went from regular color to orange to that dirty color he had pancretis about 2 months ago so they removed his gallbladder, then they gave him and ercp they said the removed stones and slush and that's what caused the pancreatis, we came home only two weeks later and he was still throwing up and still sick we went back to the hospital and they did another ercp and said they had left some gallstones in there. The thing i don't understand is they say he has had liver disease for about 15 years but i thought you cannot survive past ten years. They have him on uradosil, pentanasa, cholestraynamine, asocal. He is always tired and he can only eat so much if he eats too much he throws up, and if he is not throwing up he is puping everything he ate he is weak he cannot gain any weight. Now his ankles, knees are swollen I dont know we go back to his doctor on the 17th of april, but i dont think they are getting right, i have made another appointment with another liver doctor, i would appreciate any suggestions or any feedback. My husband is 44 years old. lost and confused Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2009 Report Share Posted April 5, 2009 -Welcome to the group. It won't be long until people start chiming in. I'm sorry for your husbands' diagnosis, but happy you found this group. It sounds very classic PSC symptoms are effecting your husband. Reminds me a lot of my brother. My brother had the insentience itching for a very long time. It is very important that you trust your doctor. I can not stress that enough. PSC is a wacky enough journey without a doctor to trust. I would suggest going through some of the archives and absorbing all the information in them. Don't be afraid to ask questions, everyone in this group has had something similar in some way or another. in TexasTwitter Feed: tiffylee Caching as La Bella Mafia For my PSC crowd: Brother, , 32, UC & PSC, Liver tx 12-12-07Subject: New memberTo: Date: Sunday, April 5, 2009, 9:14 AM hello My husband was recently diagonesed with psc about a month ago. I have alot of questions for one before we got the diagonisis he was first diagonesed, with chrohns, then they took that back and said he had ulcerative colonitis, then they took that back now he has psc. The symptons were within the past year he dropped about 4o pounds, now i have been with my husband for 14 years and he has always been itching, so they said his enzymes were up we never thought much of the itching all these years.Another thing that makes our situation complicated is that as a child he was born with an enlarged liver and he was really sick from the age of 6 till about ten he used to throw up couldnt eat or anything then he was treated with predisone and everything stopped we cannot get hold of these earlier records because they did not keep records back then we are relying on his mom's memory so now during the past year his urine went from regular color to orange to that dirty color he had pancretis about 2 months ago so they removed his gallbladder, then they gave him and ercp they said the removed stones and slush and that's what caused the pancreatis, we came home only two weeks later and he was still throwing up and still sick we went back to the hospital and they did another ercp and said they had left some gallstones in there. The thing i don't understand is they say he has had liver disease for about 15 years but i thought you cannot survive past ten years. They have him on uradosil, pentanasa, cholestraynamine, asocal. He is always tired and he can only eat so much if he eats too much he throws up, and if he is not throwing up he is puping everything he ate he is weak he cannot gain any weight. Now his ankles, knees are swollen I dont know we go back to his doctor on the 17th of april, but i dont think they are getting right, i have made another appointment with another liver doctor, i would appreciate any suggestions or any feedback. My husband is 44 years old. lost and confused Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2009 Report Share Posted April 5, 2009 ..... As we say on this site...WELCOME TO THE CLUB NO ONE WANTS TO BE A MEMBER OF! But... WE are GLAD YOU FOUND US! hit the nail on the head....This Group will help you....Also...It sounds like you are lucky and have a Dr. that at least knew something about PSC...Mine didn't...Anyway check out these two sites below... They will help you alot! You and your husband are NOT alone! http://www.psc-literature.org/psc.htm http://www.pscpartners.org/links.htm Don B. PSC/ UC 11-08 Subject: New memberTo: Date: Sunday, April 5, 2009, 2:14 PM hello My husband was recently diagonesed with psc about a month ago. I have alot of questions for one before we got the diagonisis he was first diagonesed, with chrohns, then they took that back and said he had ulcerative colonitis, then they took that back now he has psc. The symptons were within the past year he dropped about 4o pounds, now i have been with my husband for 14 years and he has always been itching, so they said his enzymes were up we never thought much of the itching all these years.Another thing that makes our situation complicated is that as a child he was born with an enlarged liver and he was really sick from the age of 6 till about ten he used to throw up couldnt eat or anything then he was treated with predisone and everything stopped we cannot get hold of these earlier records because they did not keep records back then we are relying on his mom's memory so now during the past year his urine went from regular color to orange to that dirty color he had pancretis about 2 months ago so they removed his gallbladder, then they gave him and ercp they said the removed stones and slush and that's what caused the pancreatis, we came home only two weeks later and he was still throwing up and still sick we went back to the hospital and they did another ercp and said they had left some gallstones in there. The thing i don't understand is they say he has had liver disease for about 15 years but i thought you cannot survive past ten years. They have him on uradosil, pentanasa, cholestraynamine, asocal. He is always tired and he can only eat so much if he eats too much he throws up, and if he is not throwing up he is puping everything he ate he is weak he cannot gain any weight. Now his ankles, knees are swollen I dont know we go back to his doctor on the 17th of april, but i dont think they are getting right, i have made another appointment with another liver doctor, i would appreciate any suggestions or any feedback. My husband is 44 years old. lost and confused Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2009 Report Share Posted April 5, 2009 Hi ,  And welcome to the group. There are many members of the group that have had PSC a long time. I was diagnosed in 1989 when I got quite sick and they removed my gall bladder and bile ducts (outside the liver). Others in the group weren't diagnosed as long ago but had symptoms long before they were diagnosed. The symptoms of the disease seem to vary a lot from person to person and the rate of progression varies a lot. Feel free to ask any question, most likely someone in the group has gone through it before. We will also pray for you, your husband, and the rest of your family.  Ian (almost 53) PSC 89 hello My husband was recently diagonesed with psc about a month ago. I have alot of questions for one before we got the diagonisis he was first diagonesed, with chrohns, then they took that back and said he had ulcerative colonitis, then they took that back now he has psc. The symptons were within the past year he dropped about 4o pounds, now i have been with my husband for 14 years and he has always been itching, so they said his enzymes were up we never thought much of the itching all these years.Another thing that makes our situation complicated is that as a child he was born with an enlarged liver and he was really sick from the age of 6 till about ten he used to throw up couldnt eat or anything then he was treated with predisone and everything stopped we cannot get hold of these earlier records because they did not keep records back then we are relying on his mom's memory so now during the past year his urine went from regular color to orange to that dirty color he had pancretis about 2 months ago so they removed his gallbladder, then they gave him and ercp they said the removed stones and slush and that's what caused the pancreatis, we came home only two weeks later and he was still throwing up and still sick we went back to the hospital and they did another ercp and said they had left some gallstones in there. The thing i don't understand is they say he has had liver disease for about 15 years but i thought you cannot survive past ten years. They have him on uradosil, pentanasa, cholestraynamine, asocal. He is always tired and he can only eat so much if he eats too much he throws up, and if he is not throwing up he is puping everything he ate he is weak he cannot gain any weight. Now his ankles, knees are swollen I dont know we go back to his doctor on the 17th of april, but i dont think they are getting right, i have made another appointment with another liver doctor, i would appreciate any suggestions or any feedback. My husband is 44 years old.  lost and confused -- Ian Cribb  P.Eng.cell: Enefen - Reviewer/Designerwww.enefen.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2009 Report Share Posted April 5, 2009 Hi ,  And welcome to the group. There are many members of the group that have had PSC a long time. I was diagnosed in 1989 when I got quite sick and they removed my gall bladder and bile ducts (outside the liver). Others in the group weren't diagnosed as long ago but had symptoms long before they were diagnosed. The symptoms of the disease seem to vary a lot from person to person and the rate of progression varies a lot. Feel free to ask any question, most likely someone in the group has gone through it before. We will also pray for you, your husband, and the rest of your family.  Ian (almost 53) PSC 89 hello My husband was recently diagonesed with psc about a month ago. I have alot of questions for one before we got the diagonisis he was first diagonesed, with chrohns, then they took that back and said he had ulcerative colonitis, then they took that back now he has psc. The symptons were within the past year he dropped about 4o pounds, now i have been with my husband for 14 years and he has always been itching, so they said his enzymes were up we never thought much of the itching all these years.Another thing that makes our situation complicated is that as a child he was born with an enlarged liver and he was really sick from the age of 6 till about ten he used to throw up couldnt eat or anything then he was treated with predisone and everything stopped we cannot get hold of these earlier records because they did not keep records back then we are relying on his mom's memory so now during the past year his urine went from regular color to orange to that dirty color he had pancretis about 2 months ago so they removed his gallbladder, then they gave him and ercp they said the removed stones and slush and that's what caused the pancreatis, we came home only two weeks later and he was still throwing up and still sick we went back to the hospital and they did another ercp and said they had left some gallstones in there. The thing i don't understand is they say he has had liver disease for about 15 years but i thought you cannot survive past ten years. They have him on uradosil, pentanasa, cholestraynamine, asocal. He is always tired and he can only eat so much if he eats too much he throws up, and if he is not throwing up he is puping everything he ate he is weak he cannot gain any weight. Now his ankles, knees are swollen I dont know we go back to his doctor on the 17th of april, but i dont think they are getting right, i have made another appointment with another liver doctor, i would appreciate any suggestions or any feedback. My husband is 44 years old.  lost and confused -- Ian Cribb  P.Eng.cell: Enefen - Reviewer/Designerwww.enefen.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2009 Report Share Posted April 5, 2009 Hello everyone I would like to thank everyone for their support i am so glad i found you guys.I am not feeling secluded anymore am glad I have some people who can know what am talking about. My husband should be signing in soon I am going to trust my doctor since everyone seems to be sure that he does have the psc symptoms. Thanks for all your help. From: Kakaire <kakairesarah@ yahoo.com>Subject: New memberTo: @ yahoogroups. comDate: Sunday, April 5, 2009, 9:14 AM hello My husband was recently diagonesed with psc about a month ago. I have alot of questions for one before we got the diagonisis he was first diagonesed, with chrohns, then they took that back and said he had ulcerative colonitis, then they took that back now he has psc. The symptons were within the past year he dropped about 4o pounds, now i have been with my husband for 14 years and he has always been itching, so they said his enzymes were up we never thought much of the itching all these years.Another thing that makes our situation complicated is that as a child he was born with an enlarged liver and he was really sick from the age of 6 till about ten he used to throw up couldnt eat or anything then he was treated with predisone and everything stopped we cannot get hold of these earlier records because they did not keep records back then we are relying on his mom's memory so now during the past year his urine went from regular color to orange to that dirty color he had pancretis about 2 months ago so they removed his gallbladder, then they gave him and ercp they said the removed stones and slush and that's what caused the pancreatis, we came home only two weeks later and he was still throwing up and still sick we went back to the hospital and they did another ercp and said they had left some gallstones in there. The thing i don't understand is they say he has had liver disease for about 15 years but i thought you cannot survive past ten years. They have him on uradosil, pentanasa, cholestraynamine, asocal. He is always tired and he can only eat so much if he eats too much he throws up, and if he is not throwing up he is puping everything he ate he is weak he cannot gain any weight. Now his ankles, knees are swollen I dont know we go back to his doctor on the 17th of april, but i dont think they are getting right, i have made another appointment with another liver doctor, i would appreciate any suggestions or any feedback. My husband is 44 years old. lost and confused Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2009 Report Share Posted April 5, 2009 IMHO, the number one authority on PSC are all the people living everyday with the disease. But I know what you meant ;-) Barb in Texas - Together in the Fight - Whatever it Takes! Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas >>> I think the general consciences is that the Mayo clinic is the number one authority on PSC? .._,___ Quote Link to comment Share on other sites More sharing options...
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