Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Hi , Sorry about your diagnosis, but glad you found us. I can relate I was diagnosed when I was 33 and saw some a scary prognosis which turned out to be wrong that was 19years ago. A lot of the info on the web is dated and they have made advances in the treatment of the disorder and in Liver transplants (if needed further down the road). A couple of good websites were you can get more info are; - PSC Literature - PSC Partners- PSC Support (UK) Faith is a very important part in keeping going. I and others in this group are very blessed in having a faith in God. We will be praying for you and your family. Ian (52) PSC 89 Hi may name is kelly I am 35yrs old. I was just told I have the begining stages of PCS. I have UC/j-pouch for over 15 years. I am a mom of boy /girl twins. I am not on any meds yet. Just going to the doc today for some answers I hope. I have had CT's/MRI's/ERCP's/lab work ect done. Next is the liver biopsy. I am still lost. I hope chating here will help me cope.I thought having UC was bad enough. I really had survived and conquered after being married and (my husband)him hanging aroud after the colostomy. Then the birth of my twins. I have so much scar tissue the doc said any more surgurey will be very dangerous. I was raised catholic.... Have never been the prayer type as I got older. Yet at this time in my life I feel it is all I got to keep me in a safe zone! Please respond if you can relate! thnks for listing ... -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Hi , Sorry about your diagnosis, but glad you found us. I can relate I was diagnosed when I was 33 and saw some a scary prognosis which turned out to be wrong that was 19years ago. A lot of the info on the web is dated and they have made advances in the treatment of the disorder and in Liver transplants (if needed further down the road). A couple of good websites were you can get more info are; - PSC Literature - PSC Partners- PSC Support (UK) Faith is a very important part in keeping going. I and others in this group are very blessed in having a faith in God. We will be praying for you and your family. Ian (52) PSC 89 Hi may name is kelly I am 35yrs old. I was just told I have the begining stages of PCS. I have UC/j-pouch for over 15 years. I am a mom of boy /girl twins. I am not on any meds yet. Just going to the doc today for some answers I hope. I have had CT's/MRI's/ERCP's/lab work ect done. Next is the liver biopsy. I am still lost. I hope chating here will help me cope.I thought having UC was bad enough. I really had survived and conquered after being married and (my husband)him hanging aroud after the colostomy. Then the birth of my twins. I have so much scar tissue the doc said any more surgurey will be very dangerous. I was raised catholic.... Have never been the prayer type as I got older. Yet at this time in my life I feel it is all I got to keep me in a safe zone! Please respond if you can relate! thnks for listing ... -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Hi , Sorry about your diagnosis, but glad you found us. I can relate I was diagnosed when I was 33 and saw some a scary prognosis which turned out to be wrong that was 19years ago. A lot of the info on the web is dated and they have made advances in the treatment of the disorder and in Liver transplants (if needed further down the road). A couple of good websites were you can get more info are; - PSC Literature - PSC Partners- PSC Support (UK) Faith is a very important part in keeping going. I and others in this group are very blessed in having a faith in God. We will be praying for you and your family. Ian (52) PSC 89 Hi may name is kelly I am 35yrs old. I was just told I have the begining stages of PCS. I have UC/j-pouch for over 15 years. I am a mom of boy /girl twins. I am not on any meds yet. Just going to the doc today for some answers I hope. I have had CT's/MRI's/ERCP's/lab work ect done. Next is the liver biopsy. I am still lost. I hope chating here will help me cope.I thought having UC was bad enough. I really had survived and conquered after being married and (my husband)him hanging aroud after the colostomy. Then the birth of my twins. I have so much scar tissue the doc said any more surgurey will be very dangerous. I was raised catholic.... Have never been the prayer type as I got older. Yet at this time in my life I feel it is all I got to keep me in a safe zone! Please respond if you can relate! thnks for listing ... -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Hi , Sorry about your diagnosis, but glad you found us. I can relate I was diagnosed when I was 33 and saw some a scary prognosis which turned out to be wrong that was 19years ago. A lot of the info on the web is dated and they have made advances in the treatment of the disorder and in Liver transplants (if needed further down the road). A couple of good websites were you can get more info are; - PSC Literature - PSC Partners- PSC Support (UK) Faith is a very important part in keeping going. I and others in this group are very blessed in having a faith in God. We will be praying for you and your family. Ian (52) PSC 89 Hi may name is kelly I am 35yrs old. I was just told I have the begining stages of PCS. I have UC/j-pouch for over 15 years. I am a mom of boy /girl twins. I am not on any meds yet. Just going to the doc today for some answers I hope. I have had CT's/MRI's/ERCP's/lab work ect done. Next is the liver biopsy. I am still lost. I hope chating here will help me cope.I thought having UC was bad enough. I really had survived and conquered after being married and (my husband)him hanging aroud after the colostomy. Then the birth of my twins. I have so much scar tissue the doc said any more surgurey will be very dangerous. I was raised catholic.... Have never been the prayer type as I got older. Yet at this time in my life I feel it is all I got to keep me in a safe zone! Please respond if you can relate! thnks for listing ... -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Hi , Sorry about your diagnosis, but glad you found us. I can relate I was diagnosed when I was 33 and saw some a scary prognosis which turned out to be wrong that was 19years ago. A lot of the info on the web is dated and they have made advances in the treatment of the disorder and in Liver transplants (if needed further down the road). A couple of good websites were you can get more info are; - PSC Literature - PSC Partners- PSC Support (UK) Faith is a very important part in keeping going. I and others in this group are very blessed in having a faith in God. We will be praying for you and your family. Ian (52) PSC 89 Hi may name is kelly I am 35yrs old. I was just told I have the begining stages of PCS. I have UC/j-pouch for over 15 years. I am a mom of boy /girl twins. I am not on any meds yet. Just going to the doc today for some answers I hope. I have had CT's/MRI's/ERCP's/lab work ect done. Next is the liver biopsy. I am still lost. I hope chating here will help me cope.I thought having UC was bad enough. I really had survived and conquered after being married and (my husband)him hanging aroud after the colostomy. Then the birth of my twins. I have so much scar tissue the doc said any more surgurey will be very dangerous. I was raised catholic.... Have never been the prayer type as I got older. Yet at this time in my life I feel it is all I got to keep me in a safe zone! Please respond if you can relate! thnks for listing ... -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Hi , Sorry about your diagnosis, but glad you found us. I can relate I was diagnosed when I was 33 and saw some a scary prognosis which turned out to be wrong that was 19years ago. A lot of the info on the web is dated and they have made advances in the treatment of the disorder and in Liver transplants (if needed further down the road). A couple of good websites were you can get more info are; - PSC Literature - PSC Partners- PSC Support (UK) Faith is a very important part in keeping going. I and others in this group are very blessed in having a faith in God. We will be praying for you and your family. Ian (52) PSC 89 Hi may name is kelly I am 35yrs old. I was just told I have the begining stages of PCS. I have UC/j-pouch for over 15 years. I am a mom of boy /girl twins. I am not on any meds yet. Just going to the doc today for some answers I hope. I have had CT's/MRI's/ERCP's/lab work ect done. Next is the liver biopsy. I am still lost. I hope chating here will help me cope.I thought having UC was bad enough. I really had survived and conquered after being married and (my husband)him hanging aroud after the colostomy. Then the birth of my twins. I have so much scar tissue the doc said any more surgurey will be very dangerous. I was raised catholic.... Have never been the prayer type as I got older. Yet at this time in my life I feel it is all I got to keep me in a safe zone! Please respond if you can relate! thnks for listing ... -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Welcome to the group. Every one faces and accepts the challenges of PSC (just like any other form of chronic illness) differently. Every member of this group is wonderful and that is an understatement. This group is probably the best piece of arsenal in our fight against PSC. ShaulPSC UCSent via BlackBerry by AT&TFrom: "" Date: Tue, 30 Dec 2008 16:12:50 -0000To: < >Subject: New to this! Hi may name is kelly I am 35yrs old. I was just told I have the begining stages of PCS. I have UC/j-pouch for over 15 years. I am a mom of boy /girl twins. I am not on any meds yet. Just going to the doc today for some answers I hope. I have had CT's/MRI's/ERCP's/lab work ect done. Next is the liver biopsy. I am still lost. I hope chating here will help me cope. I thought having UC was bad enough. I really had survived and conquered after being married and (my husband)him hanging aroud after the colostomy. Then the birth of my twins. I have so much scar tissue the doc said any more surgurey will be very dangerous. I was raised catholic.... Have never been the prayer type as I got older. Yet at this time in my life I feel it is all I got to keep me in a safe zone! Please respond if you can relate! thnks for listing ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Welcome to the group. Every one faces and accepts the challenges of PSC (just like any other form of chronic illness) differently. Every member of this group is wonderful and that is an understatement. This group is probably the best piece of arsenal in our fight against PSC. ShaulPSC UCSent via BlackBerry by AT&TFrom: "" Date: Tue, 30 Dec 2008 16:12:50 -0000To: < >Subject: New to this! Hi may name is kelly I am 35yrs old. I was just told I have the begining stages of PCS. I have UC/j-pouch for over 15 years. I am a mom of boy /girl twins. I am not on any meds yet. Just going to the doc today for some answers I hope. I have had CT's/MRI's/ERCP's/lab work ect done. Next is the liver biopsy. I am still lost. I hope chating here will help me cope. I thought having UC was bad enough. I really had survived and conquered after being married and (my husband)him hanging aroud after the colostomy. Then the birth of my twins. I have so much scar tissue the doc said any more surgurey will be very dangerous. I was raised catholic.... Have never been the prayer type as I got older. Yet at this time in my life I feel it is all I got to keep me in a safe zone! Please respond if you can relate! thnks for listing ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Hi , sorry you had to meet us this way, but you are not alone. I had UC for 16 years and then was dx with PSC..and 2 years later had jpouch. I have now had the pouch for 9 years and PSC 11 going on 12 years. I am on the transplant list, but my MELD score is low for my geographic area. Prayer never hurts but can help alot. When you have questions, we can always answer them based on our experience. I have found that sometimes I don't know the question I need to ask the doctor, but with the help of this group, I go to him with understanding about what I am asking and therefore am able to communicate to my Hep about my disease a whole lot better...which makes me a partner with him in the fight, instead of being a helpless victim. Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Hi , sorry you had to meet us this way, but you are not alone. I had UC for 16 years and then was dx with PSC..and 2 years later had jpouch. I have now had the pouch for 9 years and PSC 11 going on 12 years. I am on the transplant list, but my MELD score is low for my geographic area. Prayer never hurts but can help alot. When you have questions, we can always answer them based on our experience. I have found that sometimes I don't know the question I need to ask the doctor, but with the help of this group, I go to him with understanding about what I am asking and therefore am able to communicate to my Hep about my disease a whole lot better...which makes me a partner with him in the fight, instead of being a helpless victim. Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Hi , sorry you had to meet us this way, but you are not alone. I had UC for 16 years and then was dx with PSC..and 2 years later had jpouch. I have now had the pouch for 9 years and PSC 11 going on 12 years. I am on the transplant list, but my MELD score is low for my geographic area. Prayer never hurts but can help alot. When you have questions, we can always answer them based on our experience. I have found that sometimes I don't know the question I need to ask the doctor, but with the help of this group, I go to him with understanding about what I am asking and therefore am able to communicate to my Hep about my disease a whole lot better...which makes me a partner with him in the fight, instead of being a helpless victim. Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Thanks!Sent from my iPhone Welcome to the group. Every one faces and accepts the challenges of PSC (just like any other form of chronic illness) differently. Every member of this group is wonderful and that is an understatement. This group is probably the best piece of arsenal in our fight against PSC. ShaulPSC UCSent via BlackBerry by AT & TFrom: "" Date: Tue, 30 Dec 2008 16:12:50 -0000To: < >Subject: New to this! Hi may name is kelly I am 35yrs old. I was just told I have the begining stages of PCS. I have UC/j-pouch for over 15 years. I am a mom of boy /girl twins. I am not on any meds yet. Just going to the doc today for some answers I hope. I have had CT's/MRI's/ERCP's/lab work ect done. Next is the liver biopsy. I am still lost. I hope chating here will help me cope. I thought having UC was bad enough. I really had survived and conquered after being married and (my husband)him hanging aroud after the colostomy. Then the birth of my twins. I have so much scar tissue the doc said any more surgurey will be very dangerous. I was raised catholic.... Have never been the prayer type as I got older. Yet at this time in my life I feel it is all I got to keep me in a safe zone! Please respond if you can relate! thnks for listing ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Thanks!Sent from my iPhone Welcome to the group. Every one faces and accepts the challenges of PSC (just like any other form of chronic illness) differently. Every member of this group is wonderful and that is an understatement. This group is probably the best piece of arsenal in our fight against PSC. ShaulPSC UCSent via BlackBerry by AT & TFrom: "" Date: Tue, 30 Dec 2008 16:12:50 -0000To: < >Subject: New to this! Hi may name is kelly I am 35yrs old. I was just told I have the begining stages of PCS. I have UC/j-pouch for over 15 years. I am a mom of boy /girl twins. I am not on any meds yet. Just going to the doc today for some answers I hope. I have had CT's/MRI's/ERCP's/lab work ect done. Next is the liver biopsy. I am still lost. I hope chating here will help me cope. I thought having UC was bad enough. I really had survived and conquered after being married and (my husband)him hanging aroud after the colostomy. Then the birth of my twins. I have so much scar tissue the doc said any more surgurey will be very dangerous. I was raised catholic.... Have never been the prayer type as I got older. Yet at this time in my life I feel it is all I got to keep me in a safe zone! Please respond if you can relate! thnks for listing ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Thanks!Sent from my iPhone Welcome to the group. Every one faces and accepts the challenges of PSC (just like any other form of chronic illness) differently. Every member of this group is wonderful and that is an understatement. This group is probably the best piece of arsenal in our fight against PSC. ShaulPSC UCSent via BlackBerry by AT & TFrom: "" Date: Tue, 30 Dec 2008 16:12:50 -0000To: < >Subject: New to this! Hi may name is kelly I am 35yrs old. I was just told I have the begining stages of PCS. I have UC/j-pouch for over 15 years. I am a mom of boy /girl twins. I am not on any meds yet. Just going to the doc today for some answers I hope. I have had CT's/MRI's/ERCP's/lab work ect done. Next is the liver biopsy. I am still lost. I hope chating here will help me cope. I thought having UC was bad enough. I really had survived and conquered after being married and (my husband)him hanging aroud after the colostomy. Then the birth of my twins. I have so much scar tissue the doc said any more surgurey will be very dangerous. I was raised catholic.... Have never been the prayer type as I got older. Yet at this time in my life I feel it is all I got to keep me in a safe zone! Please respond if you can relate! thnks for listing ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 , Sorry to hear about your diagnosis; however, this group is very helpful and understanding. I was diagnosed with PSC and UC in 1990. In 2007 I had a liver transplant. I agree with the comments about the increased technology and understanding of the disease and the transplant process. It took the disease 17 years before it got to my liver and then it was only within the 90 days prior to transplant that I had symptoms. The transplant caused some positive changes. My UC is under control the best that it has ever been thanks to the anti-rejection meds I am taking. I take less medicine than I did prior to the transplant. I was transplanted with my liver attached directly to my duodenum (Roux-en-Y) to deter the PSC from returning. My liver numbers are in the normal range for the first time in 17 years. BTW, your husband sounds like a true keeper. My wife is like that too. Good luck. Joe To: Sent: Tuesday, December 30, 2008 10:12:50 AMSubject: New to this! Hi may name is kelly I am 35yrs old. I was just told I have the begining stages of PCS. I have UC/j-pouch for over 15 years. I am a mom of boy /girl twins. I am not on any meds yet. Just going to the doc today for some answers I hope. I have had CT's/MRI's/ERCP' s/lab work ect done. Next is the liver biopsy. I am still lost. I hope chating here will help me cope.I thought having UC was bad enough. I really had survived and conquered after being married and (my husband)him hanging aroud after the colostomy. Then the birth of my twins. I have so much scar tissue the doc said any more surgurey will be very dangerous. I was raised catholic.... Have never been the prayer type as I got older. Yet at this time in my life I feel it is all I got to keep me in a safe zone!Please respond if you can relate! thnks for listing ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 , Sorry to hear about your diagnosis; however, this group is very helpful and understanding. I was diagnosed with PSC and UC in 1990. In 2007 I had a liver transplant. I agree with the comments about the increased technology and understanding of the disease and the transplant process. It took the disease 17 years before it got to my liver and then it was only within the 90 days prior to transplant that I had symptoms. The transplant caused some positive changes. My UC is under control the best that it has ever been thanks to the anti-rejection meds I am taking. I take less medicine than I did prior to the transplant. I was transplanted with my liver attached directly to my duodenum (Roux-en-Y) to deter the PSC from returning. My liver numbers are in the normal range for the first time in 17 years. BTW, your husband sounds like a true keeper. My wife is like that too. Good luck. Joe To: Sent: Tuesday, December 30, 2008 10:12:50 AMSubject: New to this! Hi may name is kelly I am 35yrs old. I was just told I have the begining stages of PCS. I have UC/j-pouch for over 15 years. I am a mom of boy /girl twins. I am not on any meds yet. Just going to the doc today for some answers I hope. I have had CT's/MRI's/ERCP' s/lab work ect done. Next is the liver biopsy. I am still lost. I hope chating here will help me cope.I thought having UC was bad enough. I really had survived and conquered after being married and (my husband)him hanging aroud after the colostomy. Then the birth of my twins. I have so much scar tissue the doc said any more surgurey will be very dangerous. I was raised catholic.... Have never been the prayer type as I got older. Yet at this time in my life I feel it is all I got to keep me in a safe zone!Please respond if you can relate! thnks for listing ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 , Sorry to hear about your diagnosis; however, this group is very helpful and understanding. I was diagnosed with PSC and UC in 1990. In 2007 I had a liver transplant. I agree with the comments about the increased technology and understanding of the disease and the transplant process. It took the disease 17 years before it got to my liver and then it was only within the 90 days prior to transplant that I had symptoms. The transplant caused some positive changes. My UC is under control the best that it has ever been thanks to the anti-rejection meds I am taking. I take less medicine than I did prior to the transplant. I was transplanted with my liver attached directly to my duodenum (Roux-en-Y) to deter the PSC from returning. My liver numbers are in the normal range for the first time in 17 years. BTW, your husband sounds like a true keeper. My wife is like that too. Good luck. Joe To: Sent: Tuesday, December 30, 2008 10:12:50 AMSubject: New to this! Hi may name is kelly I am 35yrs old. I was just told I have the begining stages of PCS. I have UC/j-pouch for over 15 years. I am a mom of boy /girl twins. I am not on any meds yet. Just going to the doc today for some answers I hope. I have had CT's/MRI's/ERCP' s/lab work ect done. Next is the liver biopsy. I am still lost. I hope chating here will help me cope.I thought having UC was bad enough. I really had survived and conquered after being married and (my husband)him hanging aroud after the colostomy. Then the birth of my twins. I have so much scar tissue the doc said any more surgurey will be very dangerous. I was raised catholic.... Have never been the prayer type as I got older. Yet at this time in my life I feel it is all I got to keep me in a safe zone!Please respond if you can relate! thnks for listing ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Thanks. My husband is great.Sometimes I feel awful. i wish I can make him not suffer .Me being sick is enough. He is over all in good health. Thank goodness Sounds like you are doing well.That is what I hope to feel soon. how long has it been since your transfer? Sending love , laughter, good energy! Namaste', Subject: Re: New to this!To: Date: Tuesday, December 30, 2008, 6:24 PM , Sorry to hear about your diagnosis; however, this group is very helpful and understanding. I was diagnosed with PSC and UC in 1990. In 2007 I had a liver transplant. I agree with the comments about the increased technology and understanding of the disease and the transplant process. It took the disease 17 years before it got to my liver and then it was only within the 90 days prior to transplant that I had symptoms. The transplant caused some positive changes. My UC is under control the best that it has ever been thanks to the anti-rejection meds I am taking. I take less medicine than I did prior to the transplant. I was transplanted with my liver attached directly to my duodenum (Roux-en-Y) to deter the PSC from returning. My liver numbers are in the normal range for the first time in 17 years. BTW, your husband sounds like a true keeper. My wife is like that too. Good luck. Joe From: <nykelly2000@ yahoo.com>To: @ yahoogroups. comSent: Tuesday, December 30, 2008 10:12:50 AMSubject: New to this! Hi may name is kelly I am 35yrs old. I was just told I have the begining stages of PCS. I have UC/j-pouch for over 15 years. I am a mom of boy /girl twins. I am not on any meds yet. Just going to the doc today for some answers I hope. I have had CT's/MRI's/ERCP' s/lab work ect done. Next is the liver biopsy. I am still lost. I hope chating here will help me cope.I thought having UC was bad enough. I really had survived and conquered after being married and (my husband)him hanging aroud after the colostomy. Then the birth of my twins. I have so much scar tissue the doc said any more surgurey will be very dangerous. I was raised catholic.... Have never been the prayer type as I got older. Yet at this time in my life I feel it is all I got to keep me in a safe zone!Please respond if you can relate! thnks for listing ... Quote Link to comment Share on other sites More sharing options...
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