Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 Jim~ Welcome to the group! This group is full of understanding, compassion but lets not forget humor! Feel free to ask questions because someone useally knows the answer and also if you are having a bad day feel free to let it out. Welcome!!! ~ --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 Jim~ Welcome to the group! This group is full of understanding, compassion but lets not forget humor! Feel free to ask questions because someone useally knows the answer and also if you are having a bad day feel free to let it out. Welcome!!! ~ --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 In a message dated 08/28/2002 6:04:24 AM US Eastern Standard Time, catstamp@... writes: > The whole > idea of putting it in home water was to help protect kids teeth, why do > they need even more in the bottled water they drink? Yeah thats what they said on the report that they did as well...That they were doing this to protect everyone's teeth especially children, but like you said too much of anything isn't good. ) yeeahhhh me is da offical water sniffer outter....*chuckle* Allicia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Hi Enid and welcome,I was diagnosed with PSC early in 1989, and with Graves in 2004. The PSC can cause fatigue (tired although you haven't being doing anything) which I treat with naps (which fortunately I can take). The Graves or hyperthyroid caused me to very quickly become winded by an sort of physcal activity (short walk up hill, climbing more than one flight of stairs). It was explain to me, that it's like your idle in your car is set to high, causing eccess wear and a lack of reserve power. I lived with that for about a year (I could eat whatever and as much as I wanted without gaining weight) then they " killed " off my thyroid (using radioactive iodine) and I now take synthryoid daily to supply the level of enyzyme? the thyroid is suppose to make . Ian (52) PSC 89 Hi, My name is Enid Cresson. I was diagnosed in August, 2008 with PSC. I have been ill with a low grade fever and extreme fatigue since June, 2005. At the time I received my diagnosis, I was also diagnosed with Graves disease. All the doctors I have seen have not been very helpful in explaining things to me or being able to address my fatigue. I'd like to find out if anyone has been able to treat there fatigue with success. Also my PSC has started mostly in the Bilary Tree on the left side and don't know if the progression will go to my liver sooner than if it had started in the CBD. Lately, my cholestrol has become high and would like to know if that is because of the disease in the ducts or the liver. I'm quite thin and can't believe that my cholesterol is high. Thanks. -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Hi Enid and welcome,I was diagnosed with PSC early in 1989, and with Graves in 2004. The PSC can cause fatigue (tired although you haven't being doing anything) which I treat with naps (which fortunately I can take). The Graves or hyperthyroid caused me to very quickly become winded by an sort of physcal activity (short walk up hill, climbing more than one flight of stairs). It was explain to me, that it's like your idle in your car is set to high, causing eccess wear and a lack of reserve power. I lived with that for about a year (I could eat whatever and as much as I wanted without gaining weight) then they " killed " off my thyroid (using radioactive iodine) and I now take synthryoid daily to supply the level of enyzyme? the thyroid is suppose to make . Ian (52) PSC 89 Hi, My name is Enid Cresson. I was diagnosed in August, 2008 with PSC. I have been ill with a low grade fever and extreme fatigue since June, 2005. At the time I received my diagnosis, I was also diagnosed with Graves disease. All the doctors I have seen have not been very helpful in explaining things to me or being able to address my fatigue. I'd like to find out if anyone has been able to treat there fatigue with success. Also my PSC has started mostly in the Bilary Tree on the left side and don't know if the progression will go to my liver sooner than if it had started in the CBD. Lately, my cholestrol has become high and would like to know if that is because of the disease in the ducts or the liver. I'm quite thin and can't believe that my cholesterol is high. Thanks. -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Hi Enid and welcome,I was diagnosed with PSC early in 1989, and with Graves in 2004. The PSC can cause fatigue (tired although you haven't being doing anything) which I treat with naps (which fortunately I can take). The Graves or hyperthyroid caused me to very quickly become winded by an sort of physcal activity (short walk up hill, climbing more than one flight of stairs). It was explain to me, that it's like your idle in your car is set to high, causing eccess wear and a lack of reserve power. I lived with that for about a year (I could eat whatever and as much as I wanted without gaining weight) then they " killed " off my thyroid (using radioactive iodine) and I now take synthryoid daily to supply the level of enyzyme? the thyroid is suppose to make . Ian (52) PSC 89 Hi, My name is Enid Cresson. I was diagnosed in August, 2008 with PSC. I have been ill with a low grade fever and extreme fatigue since June, 2005. At the time I received my diagnosis, I was also diagnosed with Graves disease. All the doctors I have seen have not been very helpful in explaining things to me or being able to address my fatigue. I'd like to find out if anyone has been able to treat there fatigue with success. Also my PSC has started mostly in the Bilary Tree on the left side and don't know if the progression will go to my liver sooner than if it had started in the CBD. Lately, my cholestrol has become high and would like to know if that is because of the disease in the ducts or the liver. I'm quite thin and can't believe that my cholesterol is high. Thanks. -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
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 ..... 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 , Here's another site From the UK.....What State are you in? I think the general consciences is that the Mayo clinic is the number one authority on PSC? http://www...demon.co.uk/page45a.html Don B. PSC/ UC 11-08 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 6, 2009 Report Share Posted April 6, 2009 , First of all hello. I'm glad you found the group. Though, hate to hear you had to. I do not know much about liver disease. My son has only recently been diagnosed with some type of liver disease on the spectrum between AIH and PSC. I did want to reply and send you some fresh warm thoughts of prayer and concern. I'm sure others from this group who know more will share more pertinent information with you soon. I have learned most of what I do know from the group. It is pretty active. Reading old posts seemed to help me a lot this far. Good luck and blessings, in MO. son, Nick(9)liver disease 1/09 Subject: 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 6, 2009 Report Share Posted April 6, 2009 , First of all hello. I'm glad you found the group. Though, hate to hear you had to. I do not know much about liver disease. My son has only recently been diagnosed with some type of liver disease on the spectrum between AIH and PSC. I did want to reply and send you some fresh warm thoughts of prayer and concern. I'm sure others from this group who know more will share more pertinent information with you soon. I have learned most of what I do know from the group. It is pretty active. Reading old posts seemed to help me a lot this far. Good luck and blessings, in MO. son, Nick(9)liver disease 1/09 Subject: 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 8, 2009 Report Share Posted April 8, 2009 Hey LoganThanks for our insight I had the same question to why did they have him on the pentasa and the asocal. My other question is that is a liver transplant inevitable for every psc patient. After the transplant what happens are you good or you still have the disease.Subject: Re: New memberTo: Date: Monday, April 6, 2009, 1:00 AM Hi , Where do you live? This must be very scary for you right now. I also had a similar experience with doctors not sure what disease I had. Many of us have been dx for longer than 20 or more years and are still fine. I was first hospitalized for upper abdomenal pain in '84, nine years later they took out my gall bladder, I got even sicker. I was dx with chronic non viral hepatitis somewhere in the middle of '93-'00. Dec '00 I was told I had Ulcerative Colitis and then that I had Primary Bilirary Cirrohsis and then a week later Auto-immune hepatitis. I was put on prednsisone and four months later when my liver numbers did not come down, they did an ERCP and then the doctor definitively diagnosed PSC. It took a few years for the doctor to get my UC under control.I was on Pred for a year and was on 6-mp for another few years. My UC is now in remission with no meds. April 17, must seem forever away right now. With all of the symptoms he is displaying I would feel quite frantic (but that's the way I am). I had brown urine, my eyes were yellow (high bilirubin), my legs were swollen and I was itching like a mad woman at the time they dx me in Dec '00. From a liver biopsy, they placed me at stage 3. I was able to work another two years after dx. Many people have been able to work up until time of transplant. If we know where you are we might even be able to recommend a specific doctor. I would high recommend the book How Doctors Think by Jerome Groopman. I only found it this week at and Noble, but it has opened up a whole new world of communicating with doctors that I would have found invaluable before. Your husband is very lucky to have a wife like you. My husband is very supportive, but all the doctoring and research is my own project. I try to check e-mails every day. This is a very difficult time please feel free to ask any questions. I am wondering why the doctor has your husband on Pentasa and Asocal? They both do the same thing, I thought? I could not take either one of them myself. I'm not sure why they are convinced that your husband began his liver disease 15 years ago. Do you know why? I have heard of many people in this group and those without liver disease that have reacted the same way your husband did after having his gall bladder out. Take care, Cheryl ID, 50, PSC/UC/ RP/undx kidney problem New member > hello > My husband was recently diagonesed with psc about a month ago. > 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 8, 2009 Report Share Posted April 8, 2009 Hey LoganThanks for our insight I had the same question to why did they have him on the pentasa and the asocal. My other question is that is a liver transplant inevitable for every psc patient. After the transplant what happens are you good or you still have the disease.Subject: Re: New memberTo: Date: Monday, April 6, 2009, 1:00 AM Hi , Where do you live? This must be very scary for you right now. I also had a similar experience with doctors not sure what disease I had. Many of us have been dx for longer than 20 or more years and are still fine. I was first hospitalized for upper abdomenal pain in '84, nine years later they took out my gall bladder, I got even sicker. I was dx with chronic non viral hepatitis somewhere in the middle of '93-'00. Dec '00 I was told I had Ulcerative Colitis and then that I had Primary Bilirary Cirrohsis and then a week later Auto-immune hepatitis. I was put on prednsisone and four months later when my liver numbers did not come down, they did an ERCP and then the doctor definitively diagnosed PSC. It took a few years for the doctor to get my UC under control.I was on Pred for a year and was on 6-mp for another few years. My UC is now in remission with no meds. April 17, must seem forever away right now. With all of the symptoms he is displaying I would feel quite frantic (but that's the way I am). I had brown urine, my eyes were yellow (high bilirubin), my legs were swollen and I was itching like a mad woman at the time they dx me in Dec '00. From a liver biopsy, they placed me at stage 3. I was able to work another two years after dx. Many people have been able to work up until time of transplant. If we know where you are we might even be able to recommend a specific doctor. I would high recommend the book How Doctors Think by Jerome Groopman. I only found it this week at and Noble, but it has opened up a whole new world of communicating with doctors that I would have found invaluable before. Your husband is very lucky to have a wife like you. My husband is very supportive, but all the doctoring and research is my own project. I try to check e-mails every day. This is a very difficult time please feel free to ask any questions. I am wondering why the doctor has your husband on Pentasa and Asocal? They both do the same thing, I thought? I could not take either one of them myself. I'm not sure why they are convinced that your husband began his liver disease 15 years ago. Do you know why? I have heard of many people in this group and those without liver disease that have reacted the same way your husband did after having his gall bladder out. Take care, Cheryl ID, 50, PSC/UC/ RP/undx kidney problem New member > hello > My husband was recently diagonesed with psc about a month ago. > 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 8, 2009 Report Share Posted April 8, 2009 Original message: After the transplant what happens are you good or you still have the disease. , PSC can return after transplant. My transplant center removed all of my PSC meds at transplant. Depending on where you read, the risk varies from 2% to 40% that it will return. I am eighteen months post transplant and have no symptoms – my labs are great. Quote Link to comment Share on other sites More sharing options...
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