Guest guest Posted December 8, 2002 Report Share Posted December 8, 2002 Dear , Hello hope u are feeling better. There is alot to learn and you will in time.Follow your diet and know that we are here to listen.On days u don't feel like eatting remember at least try Jell-O.Read everything you can and take care of yourself. Your new friend Lola Lola New Member Hello all: My name is . I have recently been diagnosed with Pancreatitis. Today make 1 week since I have been out of the hospital after a 2 week stay. I am learning how to cope with my new diet and now with the pain. The pain medicine at this point is not helping at all. On wednesday i was ready to check myself back into the hospital, the pain was just more than I could handle. One of the problems I am having is once you tell people you have pancreatitis and they look it up they come back and say girl I did not know you drank like that. I have had 5 dacquris this year :-) far from being an alcoholic. :-( Even my mom doesn't want me to tell people why i was in the hospital because she thinks people will think i am a drun. The doctors can not figure out how I got it. did any of you go through that? What was the outcome? Also do you get use ot the diet? If anyone is in GA are you happy with your GI doctor. ANd is there anything else I need to know about the illness and the pain? Does it get better? Like I said I have just been diagnosed after 2 1/2 months of feeling bloated, vomiting, pain and just plan being sick. Any info you have I would greatly appreciate it. I have been praying that I found a support group or just people who have heard of this illness and understand. Just someone I could talk to. I appreciate any responses. Thanks so much tanya PANCREATITIS Association, Intl. Online e-mail group To reply to this message hit & quot;reply & quot; or send an e-mail to: Pancreatitis (AT) Yahoo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2002 Report Share Posted December 8, 2002 In a message dated 12/7/02 11:06:52 AM Eastern Standard Time, tanyamitchell@... writes: > Hi , I'm in the northside of Atlanta area and I can recommend either Dr. john Horney or Dr. Bruce Saltzberg. Both practice in the Atlanta area. Also please feel free to directly email me as I am the Georgia state representative. Sorry you have the cause to be here on the board, but glad you might find assistance here. Best Wishes, Poncho - GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2002 Report Share Posted December 8, 2002 In a message dated 12/7/02 11:06:52 AM Eastern Standard Time, tanyamitchell@... writes: > Hi , I'm in the northside of Atlanta area and I can recommend either Dr. john Horney or Dr. Bruce Saltzberg. Both practice in the Atlanta area. Also please feel free to directly email me as I am the Georgia state representative. Sorry you have the cause to be here on the board, but glad you might find assistance here. Best Wishes, Poncho - GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2002 Report Share Posted December 8, 2002 In a message dated 12/7/02 11:06:52 AM Eastern Standard Time, tanyamitchell@... writes: > Hi , I'm in the northside of Atlanta area and I can recommend either Dr. john Horney or Dr. Bruce Saltzberg. Both practice in the Atlanta area. Also please feel free to directly email me as I am the Georgia state representative. Sorry you have the cause to be here on the board, but glad you might find assistance here. Best Wishes, Poncho - GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2002 Report Share Posted December 8, 2002 > Hello all: > My name is . I have recently been diagnosed with > Pancreatitis. Today make 1 week since I have been out of the hospital > after a 2 week stay. I am learning how to cope with my new diet and > now with the pain. The pain medicine at this point is not helping at > all. On wednesday i was ready to check myself back into the hospital, > the pain was just more than I could handle. > >If anyone is in GA are you happy with your GI doctor. > Thanks so much > tanya : I live in SC but onthe state line at Augusta. IF you need someone in that area d-mail me directly and I will be glad to give you some names. --NOT at the Medical College of GA. -SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2002 Report Share Posted December 8, 2002 > Hello all: > My name is . I have recently been diagnosed with > Pancreatitis. Today make 1 week since I have been out of the hospital > after a 2 week stay. I am learning how to cope with my new diet and > now with the pain. The pain medicine at this point is not helping at > all. On wednesday i was ready to check myself back into the hospital, > the pain was just more than I could handle. > >If anyone is in GA are you happy with your GI doctor. > Thanks so much > tanya : I live in SC but onthe state line at Augusta. IF you need someone in that area d-mail me directly and I will be glad to give you some names. --NOT at the Medical College of GA. -SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2002 Report Share Posted December 8, 2002 > Hello all: > My name is . I have recently been diagnosed with > Pancreatitis. Today make 1 week since I have been out of the hospital > after a 2 week stay. I am learning how to cope with my new diet and > now with the pain. The pain medicine at this point is not helping at > all. On wednesday i was ready to check myself back into the hospital, > the pain was just more than I could handle. > >If anyone is in GA are you happy with your GI doctor. > Thanks so much > tanya : I live in SC but onthe state line at Augusta. IF you need someone in that area d-mail me directly and I will be glad to give you some names. --NOT at the Medical College of GA. -SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2002 Report Share Posted December 8, 2002 > Hello all: > My name is . I have recently been diagnosed with > Pancreatitis. Today make 1 week since I have been out of the hospital > after a 2 week stay. I am learning how to cope with my new diet and > now with the pain. The pain medicine at this point is not helping at > all. On wednesday i was ready to check myself back into the hospital, > the pain was just more than I could handle. > >If anyone is in GA are you happy with your GI doctor. > Thanks so much > tanya : I live in SC but onthe state line at Augusta. IF you need someone in that area d-mail me directly and I will be glad to give you some names. --NOT at the Medical College of GA. -SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2002 Report Share Posted December 8, 2002 > Hello all: > My name is . I have recently been diagnosed with > Pancreatitis. Today make 1 week since I have been out of the hospital > after a 2 week stay. I am learning how to cope with my new diet and > now with the pain. The pain medicine at this point is not helping at > all. On wednesday i was ready to check myself back into the hospital, > the pain was just more than I could handle. > >If anyone is in GA are you happy with your GI doctor. > Thanks so much > tanya : I live in SC but onthe state line at Augusta. IF you need someone in that area d-mail me directly and I will be glad to give you some names. --NOT at the Medical College of GA. -SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2002 Report Share Posted December 8, 2002 > Hello all: > My name is . I have recently been diagnosed with > Pancreatitis. Today make 1 week since I have been out of the hospital > after a 2 week stay. I am learning how to cope with my new diet and > now with the pain. The pain medicine at this point is not helping at > all. On wednesday i was ready to check myself back into the hospital, > the pain was just more than I could handle. > >If anyone is in GA are you happy with your GI doctor. > Thanks so much > tanya : I live in SC but onthe state line at Augusta. IF you need someone in that area d-mail me directly and I will be glad to give you some names. --NOT at the Medical College of GA. -SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 Hello. My name is Mark E. Armstrong (aka casca)I am glad you joined us here at the group. I am sure that you will find our group very helpful. There are many great people here and I hope that you get the support you need from this disease. If I can ever do anything to help you please let me know. I have also set up a website that deals with Pancreatitis and it can be found at http://www.top5plus5.com Also you will find some great alternate medicine at http://www.top5plus5.com/Pancreas/PAIN%20RELIEF/CranioSacral%20Therapy.htm We also have some good info on Reflexology which can be found at http://www.top5plus5.com/Pancreas/QUESTIONS%20&%20ANSWERS/Reflexology%20and% 20Massage%20Therapy.htm We also try to meet nightly in our chatroom at 8:30EST/ 5:30 PST. The chat room can be found at http://www.top5plus5.com/CHAT%20ROOMS-PANCREAS%20RELATED.htm I hope that if you have some questions or just want to share your experiences with us, you will join us there. Also if you are a diabetic and have some questions, you can find some info here http://www.top5plus5.com/Pancreas/Diabetes/DIABETES.htm I hope this finds you and yours well ICQ numbers 59196115 for house 26698786 for studio. Mark E. Armstrong NW Rep, PAI www.top5plus5.com casca@... new member > > Hi all, > My name is and my boyfriend of 10 years has been in > the hospital for over 3 weeks with Pancreatitis. I've been > doing research and just beginning to learn between the hospital > and whatever I learn from reading material. He spent 2 weeks > in the hospital and then was sent to a nursing home. His 3rd > cat scan showed the phlegemon around his pancreas healing well. > He is on pic lines for intravenous food. He seemed to be doing > great... But..his 4th cat scan showed water surrounding the > pancreas. I just got the news and I'm sure not all of it but > since it's late...I've been searching around. The doctor said > they would give him a shot to clear it up first and see if that > works. And then he will have more cat scans. He doesn't have > insurance either. He so far has been diagnosed with acute > Pancreatitis but has not had a final diagnosis. Thank you so much > for listening...I really appreciate feel so alone and I love him > so much... - > > > PANCREATITIS Association, Intl. > Online e-mail group > > To reply to this message hit & quot;reply & quot; or send an e-mail to: Pancreatitis (AT) Yahoo > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 Hello. My name is Mark E. Armstrong (aka casca)I am glad you joined us here at the group. I am sure that you will find our group very helpful. There are many great people here and I hope that you get the support you need from this disease. If I can ever do anything to help you please let me know. I have also set up a website that deals with Pancreatitis and it can be found at http://www.top5plus5.com Also you will find some great alternate medicine at http://www.top5plus5.com/Pancreas/PAIN%20RELIEF/CranioSacral%20Therapy.htm We also have some good info on Reflexology which can be found at http://www.top5plus5.com/Pancreas/QUESTIONS%20&%20ANSWERS/Reflexology%20and% 20Massage%20Therapy.htm We also try to meet nightly in our chatroom at 8:30EST/ 5:30 PST. The chat room can be found at http://www.top5plus5.com/CHAT%20ROOMS-PANCREAS%20RELATED.htm I hope that if you have some questions or just want to share your experiences with us, you will join us there. Also if you are a diabetic and have some questions, you can find some info here http://www.top5plus5.com/Pancreas/Diabetes/DIABETES.htm I hope this finds you and yours well ICQ numbers 59196115 for house 26698786 for studio. Mark E. Armstrong NW Rep, PAI www.top5plus5.com casca@... new member > > Hi all, > My name is and my boyfriend of 10 years has been in > the hospital for over 3 weeks with Pancreatitis. I've been > doing research and just beginning to learn between the hospital > and whatever I learn from reading material. He spent 2 weeks > in the hospital and then was sent to a nursing home. His 3rd > cat scan showed the phlegemon around his pancreas healing well. > He is on pic lines for intravenous food. He seemed to be doing > great... But..his 4th cat scan showed water surrounding the > pancreas. I just got the news and I'm sure not all of it but > since it's late...I've been searching around. The doctor said > they would give him a shot to clear it up first and see if that > works. And then he will have more cat scans. He doesn't have > insurance either. He so far has been diagnosed with acute > Pancreatitis but has not had a final diagnosis. Thank you so much > for listening...I really appreciate feel so alone and I love him > so much... - > > > PANCREATITIS Association, Intl. > Online e-mail group > > To reply to this message hit & quot;reply & quot; or send an e-mail to: Pancreatitis (AT) Yahoo > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 Hello. My name is Mark E. Armstrong (aka casca)I am glad you joined us here at the group. I am sure that you will find our group very helpful. There are many great people here and I hope that you get the support you need from this disease. If I can ever do anything to help you please let me know. I have also set up a website that deals with Pancreatitis and it can be found at http://www.top5plus5.com Also you will find some great alternate medicine at http://www.top5plus5.com/Pancreas/PAIN%20RELIEF/CranioSacral%20Therapy.htm We also have some good info on Reflexology which can be found at http://www.top5plus5.com/Pancreas/QUESTIONS%20&%20ANSWERS/Reflexology%20and% 20Massage%20Therapy.htm We also try to meet nightly in our chatroom at 8:30EST/ 5:30 PST. The chat room can be found at http://www.top5plus5.com/CHAT%20ROOMS-PANCREAS%20RELATED.htm I hope that if you have some questions or just want to share your experiences with us, you will join us there. Also if you are a diabetic and have some questions, you can find some info here http://www.top5plus5.com/Pancreas/Diabetes/DIABETES.htm I hope this finds you and yours well ICQ numbers 59196115 for house 26698786 for studio. Mark E. Armstrong NW Rep, PAI www.top5plus5.com casca@... new member > > Hi all, > My name is and my boyfriend of 10 years has been in > the hospital for over 3 weeks with Pancreatitis. I've been > doing research and just beginning to learn between the hospital > and whatever I learn from reading material. He spent 2 weeks > in the hospital and then was sent to a nursing home. His 3rd > cat scan showed the phlegemon around his pancreas healing well. > He is on pic lines for intravenous food. He seemed to be doing > great... But..his 4th cat scan showed water surrounding the > pancreas. I just got the news and I'm sure not all of it but > since it's late...I've been searching around. The doctor said > they would give him a shot to clear it up first and see if that > works. And then he will have more cat scans. He doesn't have > insurance either. He so far has been diagnosed with acute > Pancreatitis but has not had a final diagnosis. Thank you so much > for listening...I really appreciate feel so alone and I love him > so much... - > > > PANCREATITIS Association, Intl. > Online e-mail group > > To reply to this message hit & quot;reply & quot; or send an e-mail to: Pancreatitis (AT) Yahoo > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 , We a loved one has their first experience with this disease is it can be a time of great worry and concern. Most people initially know nothing about pancreatitis and all its complications, and I commend you for trying to research about it and for coming here for support and information. Those are positive steps, and the more knowledge you have, the better equipped you will be to help your boyfriend in the future. If you go to our pancreatitis library site at: http://www.top5plus5.com/ you will learn valuable information about pancreatitis and related subjects of interest. There is also good information in our " Files " section from Hopkins Medical University. Some cases of acute pancreatitis are a one time occurance, and once recovered, if the patient follows strict medical guidelines, they may never have another attack. Others are known to have acute attacks only, but not the chronic condition, and others develop the chronic condition called chronic pancreatitis where they have regular chronic pain interspersed with acute attacks. At this point in the game, it is unknown what catagory your boyfried will fall in to. We will hope for the best outcome for him. Please let us know if there are any specific questions you may have. And please know that we are here for you and want to help you through this troubled time. You are not alone. With hope and prayers, Heidi Heidi H. Griffeth South Carolina Southeastern Representative PAI, Intl. Hi all, My name is and my boyfriend of 10 years has been in the hospital for over 3 weeks with Pancreatitis. He spent 2 weeks in the hospital and then was sent to a nursing home. His 3rd cat scan showed the phlegemon around his pancreas healing well. He is on pic lines for intravenous food. He seemed to be doing great... But..his 4th cat scan showed water surrounding the pancreas. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 , We a loved one has their first experience with this disease is it can be a time of great worry and concern. Most people initially know nothing about pancreatitis and all its complications, and I commend you for trying to research about it and for coming here for support and information. Those are positive steps, and the more knowledge you have, the better equipped you will be to help your boyfriend in the future. If you go to our pancreatitis library site at: http://www.top5plus5.com/ you will learn valuable information about pancreatitis and related subjects of interest. There is also good information in our " Files " section from Hopkins Medical University. Some cases of acute pancreatitis are a one time occurance, and once recovered, if the patient follows strict medical guidelines, they may never have another attack. Others are known to have acute attacks only, but not the chronic condition, and others develop the chronic condition called chronic pancreatitis where they have regular chronic pain interspersed with acute attacks. At this point in the game, it is unknown what catagory your boyfried will fall in to. We will hope for the best outcome for him. Please let us know if there are any specific questions you may have. And please know that we are here for you and want to help you through this troubled time. You are not alone. With hope and prayers, Heidi Heidi H. Griffeth South Carolina Southeastern Representative PAI, Intl. Hi all, My name is and my boyfriend of 10 years has been in the hospital for over 3 weeks with Pancreatitis. He spent 2 weeks in the hospital and then was sent to a nursing home. His 3rd cat scan showed the phlegemon around his pancreas healing well. He is on pic lines for intravenous food. He seemed to be doing great... But..his 4th cat scan showed water surrounding the pancreas. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 , We a loved one has their first experience with this disease is it can be a time of great worry and concern. Most people initially know nothing about pancreatitis and all its complications, and I commend you for trying to research about it and for coming here for support and information. Those are positive steps, and the more knowledge you have, the better equipped you will be to help your boyfriend in the future. If you go to our pancreatitis library site at: http://www.top5plus5.com/ you will learn valuable information about pancreatitis and related subjects of interest. There is also good information in our " Files " section from Hopkins Medical University. Some cases of acute pancreatitis are a one time occurance, and once recovered, if the patient follows strict medical guidelines, they may never have another attack. Others are known to have acute attacks only, but not the chronic condition, and others develop the chronic condition called chronic pancreatitis where they have regular chronic pain interspersed with acute attacks. At this point in the game, it is unknown what catagory your boyfried will fall in to. We will hope for the best outcome for him. Please let us know if there are any specific questions you may have. And please know that we are here for you and want to help you through this troubled time. You are not alone. With hope and prayers, Heidi Heidi H. Griffeth South Carolina Southeastern Representative PAI, Intl. Hi all, My name is and my boyfriend of 10 years has been in the hospital for over 3 weeks with Pancreatitis. He spent 2 weeks in the hospital and then was sent to a nursing home. His 3rd cat scan showed the phlegemon around his pancreas healing well. He is on pic lines for intravenous food. He seemed to be doing great... But..his 4th cat scan showed water surrounding the pancreas. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2006 Report Share Posted February 6, 2006 Hi , This is a great place to be when starting off and then maintaining SCD. It's a very healthy diet and I'm sure your daughter to be will be a healthier and happy girl for it! Cheryl Mom to 7.5 yrs SCD 1.5 yrs and 3 > > Hello Everyone! > > I am new here and just wanted to introduce myself. I am from > Florida and have a daughter with a Brain Injury from birth (best DR's guess is > stroke in utero) that I am in the process of Adopting. She is non verbal, CP , > Developmental delayed and wheel chiar bound . She is 6 1/2 and functions > cognitively around 24 months. She does not have autism but I have heard from parents > with Brain injured children that have tried the SCD and said that it has > helped improve their children's behavior. She is having trouble at school handling > her angry due to her lack of communication she is getting frustrated very > easily with the teacher. I also heard about the book BTVC from a BI seminar I went > to in Nov. So I have decided to order the book and see where I go from there. > I thought I would join this group to get a feel for the diet. Thanks for > having me. > > > Sincerely, > > > ¸...¸ __/ /\____ ____ > ,·´º o`·,/__/ _/\_ //____/\ > ```)¨(´´´ | | | | | | | || |l±±±± | > ¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-. :º° > As for me and my house, we will serve the Lord! > > > 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, As we always say, I'm sorry you need to be here, but you have found a wonderful caring group of people, many of whom know more about PSC than most doctors. Never hesitate to ask questions, but you might want to prowl around the site and look at the links, etc. As for your cholesterol, I had always had lower than average cholestrol and, when it spiked in the fall of 1996, my doctor looked for a reason and found gallstones in my CBD and gallbladder. The ERCP to deal with them resulted in the PSC diagnosis. Penny -- In , " offgridaudio " wrote: > > Hi, My name is Enid Cresson. 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. > 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, As we always say, I'm sorry you need to be here, but you have found a wonderful caring group of people, many of whom know more about PSC than most doctors. Never hesitate to ask questions, but you might want to prowl around the site and look at the links, etc. As for your cholesterol, I had always had lower than average cholestrol and, when it spiked in the fall of 1996, my doctor looked for a reason and found gallstones in my CBD and gallbladder. The ERCP to deal with them resulted in the PSC diagnosis. Penny -- In , " offgridaudio " wrote: > > Hi, My name is Enid Cresson. 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. > 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, As we always say, I'm sorry you need to be here, but you have found a wonderful caring group of people, many of whom know more about PSC than most doctors. Never hesitate to ask questions, but you might want to prowl around the site and look at the links, etc. As for your cholesterol, I had always had lower than average cholestrol and, when it spiked in the fall of 1996, my doctor looked for a reason and found gallstones in my CBD and gallbladder. The ERCP to deal with them resulted in the PSC diagnosis. Penny -- In , " offgridaudio " wrote: > > Hi, My name is Enid Cresson. 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. > 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 -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 , 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 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...
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