Guest guest Posted April 5, 2009 Report Share Posted April 5, 2009 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 6, 2009 Report Share Posted April 6, 2009 I am in detroit michigan 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 I am in detroit michigan 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 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 Same question here re Asacol and Pentasa - same chemical (mesalamine). Each uses a release mechanism that dumps the mesalamine in the intestine (so they basically act as a topical coating for the gut). Asacol is released at pH 7-7.5 (in the colon), and Pentasa is designed to release higher up so it can be used for crohns as well as UC which typically impacts more of the intestine (those tiny white pellets inside the capsule are like whiffle balls with powder inside that spews out as it goes through the gut -I used to know what the trigger is, but I've forgotten. I've never heard of anyone taking both at the same time (although switching from one to the other might be possible if a different location needed to be reached). , Mom to 18 yo daughter UC 6/95, PSC 3/09To: Sent: Wednesday, April 8, 2009 8:48:58 AMSubject: Re: New member 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Same question here re Asacol and Pentasa - same chemical (mesalamine). Each uses a release mechanism that dumps the mesalamine in the intestine (so they basically act as a topical coating for the gut). Asacol is released at pH 7-7.5 (in the colon), and Pentasa is designed to release higher up so it can be used for crohns as well as UC which typically impacts more of the intestine (those tiny white pellets inside the capsule are like whiffle balls with powder inside that spews out as it goes through the gut -I used to know what the trigger is, but I've forgotten. I've never heard of anyone taking both at the same time (although switching from one to the other might be possible if a different location needed to be reached). , Mom to 18 yo daughter UC 6/95, PSC 3/09To: Sent: Wednesday, April 8, 2009 8:48:58 AMSubject: Re: New member 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Same question here re Asacol and Pentasa - same chemical (mesalamine). Each uses a release mechanism that dumps the mesalamine in the intestine (so they basically act as a topical coating for the gut). Asacol is released at pH 7-7.5 (in the colon), and Pentasa is designed to release higher up so it can be used for crohns as well as UC which typically impacts more of the intestine (those tiny white pellets inside the capsule are like whiffle balls with powder inside that spews out as it goes through the gut -I used to know what the trigger is, but I've forgotten. I've never heard of anyone taking both at the same time (although switching from one to the other might be possible if a different location needed to be reached). , Mom to 18 yo daughter UC 6/95, PSC 3/09To: Sent: Wednesday, April 8, 2009 8:48:58 AMSubject: Re: New member 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. 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...
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...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 , You are very welcome. I am Cheryl, my husband is Logan. I can hardly remember what it was like to be a new member (or newly dx). I do remember the great relief at the time of finally getting a diagnosis. I think over the years one thing that has been hard for me is the long, slow suspense of wondering how my liver would deteriorate and how I would handle it. I got some idealistic ideas in mind about how I would work right up to the transplant, I would be so noble, I wouldn't complain, doctors and nurses would all admire me, and I would inspire those around me. It sounds funny or just plain weird, but I am kind of that way. I worked for two years and between the fatigue, pain, chronic infections, and a work injury, I didn't last long. Just when I learn to live with my level of health, I drop a few levels, and have to figure out how to adjust. It really helps to have this group to relate to. don't hesitate to ask questions and if we don't answer, ask again. Take care, Cheryl ID, 50, PSC/UC/RP/undx kidney problem Re: New member > Hey Logan > Thanks for our insight > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 , You are very welcome. I am Cheryl, my husband is Logan. I can hardly remember what it was like to be a new member (or newly dx). I do remember the great relief at the time of finally getting a diagnosis. I think over the years one thing that has been hard for me is the long, slow suspense of wondering how my liver would deteriorate and how I would handle it. I got some idealistic ideas in mind about how I would work right up to the transplant, I would be so noble, I wouldn't complain, doctors and nurses would all admire me, and I would inspire those around me. It sounds funny or just plain weird, but I am kind of that way. I worked for two years and between the fatigue, pain, chronic infections, and a work injury, I didn't last long. Just when I learn to live with my level of health, I drop a few levels, and have to figure out how to adjust. It really helps to have this group to relate to. don't hesitate to ask questions and if we don't answer, ask again. Take care, Cheryl ID, 50, PSC/UC/RP/undx kidney problem Re: New member > Hey Logan > Thanks for our insight > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Hello my new family my name is john my e-mail adddress is jiahotby@... the questions i have is i had surgery about 2 mounths ago an my belly is swollen all the time i really don't know what 2 do about it like it has water all in it but i still get hungary an must eat any help on this matter will be nice thank's Subject: Re: New memberTo: Date: Wednesday, April 8, 2009, 2:31 PM ,You are very welcome. I am Cheryl, my husband is Logan. I can hardly remember what it was like to be a new member (or newly dx). I do remember the great relief at the time of finally getting a diagnosis. I think over the years one thing that has been hard for me is the long, slow suspense of wondering how my liver would deteriorate and how I would handle it. I got some idealistic ideas in mind about how I would work right up to the transplant, I would be so noble, I wouldn't complain, doctors and nurses would all admire me, and I would inspire those around me. It sounds funny or just plain weird, but I am kind of that way. I worked for two years and between the fatigue, pain, chronic infections, and a work injury, I didn't last long. Just when I learn to live with my level of health, I drop a few levels, and have to figure out how to adjust. It really helps to have this group to relate to. don't hesitate to ask questions and if we don't answer, ask again. Take care, Cheryl ID, 50, PSC/UC/RP/undx kidney problem Re: New member> Hey Logan> Thanks for our insight > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Hello my new family my name is john my e-mail adddress is jiahotby@... the questions i have is i had surgery about 2 mounths ago an my belly is swollen all the time i really don't know what 2 do about it like it has water all in it but i still get hungary an must eat any help on this matter will be nice thank's Subject: Re: New memberTo: Date: Wednesday, April 8, 2009, 2:31 PM ,You are very welcome. I am Cheryl, my husband is Logan. I can hardly remember what it was like to be a new member (or newly dx). I do remember the great relief at the time of finally getting a diagnosis. I think over the years one thing that has been hard for me is the long, slow suspense of wondering how my liver would deteriorate and how I would handle it. I got some idealistic ideas in mind about how I would work right up to the transplant, I would be so noble, I wouldn't complain, doctors and nurses would all admire me, and I would inspire those around me. It sounds funny or just plain weird, but I am kind of that way. I worked for two years and between the fatigue, pain, chronic infections, and a work injury, I didn't last long. Just when I learn to live with my level of health, I drop a few levels, and have to figure out how to adjust. It really helps to have this group to relate to. don't hesitate to ask questions and if we don't answer, ask again. Take care, Cheryl ID, 50, PSC/UC/RP/undx kidney problem Re: New member> Hey Logan> Thanks for our insight > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Hi , It sounds from your brief description maybe like ascites – see http://en.wikipedia.org/wiki/Ascites. What does your doctor say? Anita From: [mailto: ] On Behalf Of Kakaire Sent: Wednesday, April 08, 2009 2:10 PM To: Subject: Re: New member Hello my new family my name is john my e-mail adddress is jiahotby@... the questions i have is i had surgery about 2 mounths ago an my belly is swollen all the time i really don't know what 2 do about it like it has water all in it but i still get hungary an must eat any help on this matter will be nice thank's Subject: Re: New member To: Date: Wednesday, April 8, 2009, 2:31 PM , You are very welcome. I am Cheryl, my husband is Logan. I can hardly remember what it was like to be a new member (or newly dx). I do remember the great relief at the time of finally getting a diagnosis. I think over the years one thing that has been hard for me is the long, slow suspense of wondering how my liver would deteriorate and how I would handle it. I got some idealistic ideas in mind about how I would work right up to the transplant, I would be so noble, I wouldn't complain, doctors and nurses would all admire me, and I would inspire those around me. It sounds funny or just plain weird, but I am kind of that way. I worked for two years and between the fatigue, pain, chronic infections, and a work injury, I didn't last long. Just when I learn to live with my level of health, I drop a few levels, and have to figure out how to adjust. It really helps to have this group to relate to. don't hesitate to ask questions and if we don't answer, ask again. Take care, Cheryl ID, 50, PSC/UC/RP/undx kidney problem Re: New member > Hey Logan > Thanks for our insight > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Hi , It sounds from your brief description maybe like ascites – see http://en.wikipedia.org/wiki/Ascites. What does your doctor say? Anita From: [mailto: ] On Behalf Of Kakaire Sent: Wednesday, April 08, 2009 2:10 PM To: Subject: Re: New member Hello my new family my name is john my e-mail adddress is jiahotby@... the questions i have is i had surgery about 2 mounths ago an my belly is swollen all the time i really don't know what 2 do about it like it has water all in it but i still get hungary an must eat any help on this matter will be nice thank's Subject: Re: New member To: Date: Wednesday, April 8, 2009, 2:31 PM , You are very welcome. I am Cheryl, my husband is Logan. I can hardly remember what it was like to be a new member (or newly dx). I do remember the great relief at the time of finally getting a diagnosis. I think over the years one thing that has been hard for me is the long, slow suspense of wondering how my liver would deteriorate and how I would handle it. I got some idealistic ideas in mind about how I would work right up to the transplant, I would be so noble, I wouldn't complain, doctors and nurses would all admire me, and I would inspire those around me. It sounds funny or just plain weird, but I am kind of that way. I worked for two years and between the fatigue, pain, chronic infections, and a work injury, I didn't last long. Just when I learn to live with my level of health, I drop a few levels, and have to figure out how to adjust. It really helps to have this group to relate to. don't hesitate to ask questions and if we don't answer, ask again. Take care, Cheryl ID, 50, PSC/UC/RP/undx kidney problem Re: New member > Hey Logan > Thanks for our insight > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Hi , It sounds from your brief description maybe like ascites – see http://en.wikipedia.org/wiki/Ascites. What does your doctor say? Anita From: [mailto: ] On Behalf Of Kakaire Sent: Wednesday, April 08, 2009 2:10 PM To: Subject: Re: New member Hello my new family my name is john my e-mail adddress is jiahotby@... the questions i have is i had surgery about 2 mounths ago an my belly is swollen all the time i really don't know what 2 do about it like it has water all in it but i still get hungary an must eat any help on this matter will be nice thank's Subject: Re: New member To: Date: Wednesday, April 8, 2009, 2:31 PM , You are very welcome. I am Cheryl, my husband is Logan. I can hardly remember what it was like to be a new member (or newly dx). I do remember the great relief at the time of finally getting a diagnosis. I think over the years one thing that has been hard for me is the long, slow suspense of wondering how my liver would deteriorate and how I would handle it. I got some idealistic ideas in mind about how I would work right up to the transplant, I would be so noble, I wouldn't complain, doctors and nurses would all admire me, and I would inspire those around me. It sounds funny or just plain weird, but I am kind of that way. I worked for two years and between the fatigue, pain, chronic infections, and a work injury, I didn't last long. Just when I learn to live with my level of health, I drop a few levels, and have to figure out how to adjust. It really helps to have this group to relate to. don't hesitate to ask questions and if we don't answer, ask again. Take care, Cheryl ID, 50, PSC/UC/RP/undx kidney problem Re: New member > Hey Logan > Thanks for our insight > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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