Guest guest Posted April 1, 2003 Report Share Posted April 1, 2003 Hi Carolyn, I " m so sorry this is late. I haven't been able to keep up with the list they way I want. My name is . I'm mom to 4. 8, 4 dx with autism, 3 (next week) we are almost sure we will get an autism dx here also and Adeline is 6 months old. I'm sure you will enjoy this list. It's been my home for over a year now and I wouldn't want it any other way. Love Introduction Hi everyone! My name is Carolyn, I'm a 41 y.o. SAHM in Michigan. My kids are: Marty, 13, autistic and mentally impaired. Logan, 11, ADHD I'm hoping to have some fun, learn some coping techniques, and share what I've learned with anyone who's interested. BTW, In Michigan, the alphabet soup for autism is AI (autistically impaired) so if you see me use that, please forgive. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2003 Report Share Posted April 1, 2003 Hi Carolyn, I " m so sorry this is late. I haven't been able to keep up with the list they way I want. My name is . I'm mom to 4. 8, 4 dx with autism, 3 (next week) we are almost sure we will get an autism dx here also and Adeline is 6 months old. I'm sure you will enjoy this list. It's been my home for over a year now and I wouldn't want it any other way. Love Introduction Hi everyone! My name is Carolyn, I'm a 41 y.o. SAHM in Michigan. My kids are: Marty, 13, autistic and mentally impaired. Logan, 11, ADHD I'm hoping to have some fun, learn some coping techniques, and share what I've learned with anyone who's interested. BTW, In Michigan, the alphabet soup for autism is AI (autistically impaired) so if you see me use that, please forgive. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Hey Shellie, I just wanted to post to you to let you know that my RNY was on Jan 22 of this year (very close to you) and I am now 13 weeks pg. I started out at 264 5'7 " and was at 204 at my first OB appt. I weighed this past Sat and I was down to 190 so expect to continue losing some while you are pg. I don't know why taking prevacid is part of your post-op regimine so I can't answer that question. As far as I know unless you have other reasons for a c-sec you won't have to have one. I am going to have a c-sec only because this will be my second child and the first was delivered c-sec and it is my choice this time to have a repeat. Good luck and just know that we are at almost the same stages both post op and pg wise. Marjorie Tristan 1/19/00 RNY 1/22/03 264/190/150 (someday) EDD 1/4/04 c-sec in Dec. Introduction Hi All, I'm new to this list and am horribly grateful to have found it. I had RNY on Jan 15, 2003 and am down about 76 pounds. Just found out last week that I'm pregnant (my first pregnancy ever). Currently, I'm 6 weeks or so along and have been roundly chastised by my surgeon for getting pregnant. For what it's worth, it was a complete accident but here we are and I'm getting excited. I'm anxious to hear from anyone else who is in the same situation as I am. Part of my post-op regimen is to take Prevacid every day. Does anyone know if this is harmful to a developing fetus? I've got a call in to my pharmacist (surgeon didn't know) but thought I'd check in here. I've stopped for now. I also take a multi-vitamin and two CitriCals. Nothing else, though. Did anyone alter their diet to eat a more rounded diet rather than just protein, protein, protein? I figure the baby won't do so well on a diet of string cheese and chili...so I'll have to change something! So far, I feel terrific. No nausea, no soreness, just lots of frequent urination and no period. Aside from the positive test, I wouldn't believe I was pregnant. My first OB appt is not until July 22 so I'm just gathering information until then. Do many folks like us go to specialists or high-risk docs? Any information would be great - thanks!! Shellie Frederick, MD RNY: 1/15/03 282/206/?? EDD: 2/22/04 - approx 6 weeks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Hey Shellie, I just wanted to post to you to let you know that my RNY was on Jan 22 of this year (very close to you) and I am now 13 weeks pg. I started out at 264 5'7 " and was at 204 at my first OB appt. I weighed this past Sat and I was down to 190 so expect to continue losing some while you are pg. I don't know why taking prevacid is part of your post-op regimine so I can't answer that question. As far as I know unless you have other reasons for a c-sec you won't have to have one. I am going to have a c-sec only because this will be my second child and the first was delivered c-sec and it is my choice this time to have a repeat. Good luck and just know that we are at almost the same stages both post op and pg wise. Marjorie Tristan 1/19/00 RNY 1/22/03 264/190/150 (someday) EDD 1/4/04 c-sec in Dec. Introduction Hi All, I'm new to this list and am horribly grateful to have found it. I had RNY on Jan 15, 2003 and am down about 76 pounds. Just found out last week that I'm pregnant (my first pregnancy ever). Currently, I'm 6 weeks or so along and have been roundly chastised by my surgeon for getting pregnant. For what it's worth, it was a complete accident but here we are and I'm getting excited. I'm anxious to hear from anyone else who is in the same situation as I am. Part of my post-op regimen is to take Prevacid every day. Does anyone know if this is harmful to a developing fetus? I've got a call in to my pharmacist (surgeon didn't know) but thought I'd check in here. I've stopped for now. I also take a multi-vitamin and two CitriCals. Nothing else, though. Did anyone alter their diet to eat a more rounded diet rather than just protein, protein, protein? I figure the baby won't do so well on a diet of string cheese and chili...so I'll have to change something! So far, I feel terrific. No nausea, no soreness, just lots of frequent urination and no period. Aside from the positive test, I wouldn't believe I was pregnant. My first OB appt is not until July 22 so I'm just gathering information until then. Do many folks like us go to specialists or high-risk docs? Any information would be great - thanks!! Shellie Frederick, MD RNY: 1/15/03 282/206/?? EDD: 2/22/04 - approx 6 weeks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Hey Shellie, I just wanted to post to you to let you know that my RNY was on Jan 22 of this year (very close to you) and I am now 13 weeks pg. I started out at 264 5'7 " and was at 204 at my first OB appt. I weighed this past Sat and I was down to 190 so expect to continue losing some while you are pg. I don't know why taking prevacid is part of your post-op regimine so I can't answer that question. As far as I know unless you have other reasons for a c-sec you won't have to have one. I am going to have a c-sec only because this will be my second child and the first was delivered c-sec and it is my choice this time to have a repeat. Good luck and just know that we are at almost the same stages both post op and pg wise. Marjorie Tristan 1/19/00 RNY 1/22/03 264/190/150 (someday) EDD 1/4/04 c-sec in Dec. Introduction Hi All, I'm new to this list and am horribly grateful to have found it. I had RNY on Jan 15, 2003 and am down about 76 pounds. Just found out last week that I'm pregnant (my first pregnancy ever). Currently, I'm 6 weeks or so along and have been roundly chastised by my surgeon for getting pregnant. For what it's worth, it was a complete accident but here we are and I'm getting excited. I'm anxious to hear from anyone else who is in the same situation as I am. Part of my post-op regimen is to take Prevacid every day. Does anyone know if this is harmful to a developing fetus? I've got a call in to my pharmacist (surgeon didn't know) but thought I'd check in here. I've stopped for now. I also take a multi-vitamin and two CitriCals. Nothing else, though. Did anyone alter their diet to eat a more rounded diet rather than just protein, protein, protein? I figure the baby won't do so well on a diet of string cheese and chili...so I'll have to change something! So far, I feel terrific. No nausea, no soreness, just lots of frequent urination and no period. Aside from the positive test, I wouldn't believe I was pregnant. My first OB appt is not until July 22 so I'm just gathering information until then. Do many folks like us go to specialists or high-risk docs? Any information would be great - thanks!! Shellie Frederick, MD RNY: 1/15/03 282/206/?? EDD: 2/22/04 - approx 6 weeks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 Daaaaaaannnnnnnnn!!!!!!!!! I'm SO glad you and decided to join the group. I know how scared you both are right now, but you honestly couldn't be in a better place! There are SO many women here who conceived early on after WLS, and hopefully the couple that I know of who conceived before surgery and didn't know it are still lurking around and will post. You will find a wealth of information here, probably more then you would LIKE to hear LOL.......Hang around, read, post, whatever you need to do. And remember, you are always in my thoughts and prayers and I just KNOW everything will be ok. So glad you are here!! Love ya!!! Marcy Introduction > Hey, I just joined but I am a guy, is that okay? I had RNY just over > three years ago and my wife just had it a week ago exactly at this > hour. She did her pre-op testing on Friday the 20th, serum pregnancy > test said NEG,,,,surgery on Monday and last night she did a home test > because she did not start as expected in the hospital and it was > positive, a mad dash to the lab this morning and she was POSITIVE. > > We lost our last at three months some two years back and have a > little girl who is going to be four in November. She, nor I, have > really gotten by that loss and now we are scared out of our brains > here. Any advice? > > Dan Slone > Surgry 5/2/2000 > > > > > > > Children are a blessing, and a gift from the Lord. -Psalm 127:3 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 Daaaaaaannnnnnnnn!!!!!!!!! I'm SO glad you and decided to join the group. I know how scared you both are right now, but you honestly couldn't be in a better place! There are SO many women here who conceived early on after WLS, and hopefully the couple that I know of who conceived before surgery and didn't know it are still lurking around and will post. You will find a wealth of information here, probably more then you would LIKE to hear LOL.......Hang around, read, post, whatever you need to do. And remember, you are always in my thoughts and prayers and I just KNOW everything will be ok. So glad you are here!! Love ya!!! Marcy Introduction > Hey, I just joined but I am a guy, is that okay? I had RNY just over > three years ago and my wife just had it a week ago exactly at this > hour. She did her pre-op testing on Friday the 20th, serum pregnancy > test said NEG,,,,surgery on Monday and last night she did a home test > because she did not start as expected in the hospital and it was > positive, a mad dash to the lab this morning and she was POSITIVE. > > We lost our last at three months some two years back and have a > little girl who is going to be four in November. She, nor I, have > really gotten by that loss and now we are scared out of our brains > here. Any advice? > > Dan Slone > Surgry 5/2/2000 > > > > > > > Children are a blessing, and a gift from the Lord. -Psalm 127:3 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 Daaaaaaannnnnnnnn!!!!!!!!! I'm SO glad you and decided to join the group. I know how scared you both are right now, but you honestly couldn't be in a better place! There are SO many women here who conceived early on after WLS, and hopefully the couple that I know of who conceived before surgery and didn't know it are still lurking around and will post. You will find a wealth of information here, probably more then you would LIKE to hear LOL.......Hang around, read, post, whatever you need to do. And remember, you are always in my thoughts and prayers and I just KNOW everything will be ok. So glad you are here!! Love ya!!! Marcy Introduction > Hey, I just joined but I am a guy, is that okay? I had RNY just over > three years ago and my wife just had it a week ago exactly at this > hour. She did her pre-op testing on Friday the 20th, serum pregnancy > test said NEG,,,,surgery on Monday and last night she did a home test > because she did not start as expected in the hospital and it was > positive, a mad dash to the lab this morning and she was POSITIVE. > > We lost our last at three months some two years back and have a > little girl who is going to be four in November. She, nor I, have > really gotten by that loss and now we are scared out of our brains > here. Any advice? > > Dan Slone > Surgry 5/2/2000 > > > > > > > Children are a blessing, and a gift from the Lord. -Psalm 127:3 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Welcome, & Leo- We're happy that you came out of " lurkdom " to introduce yourselves! Especially since you came out with a post full of good news! That's terrific! Thanks for sharing Leo's progress with us! When had her tenotomy, we had a similar positive experience- she wasn't very fussy at all! I'm glad everything went well for your little boy. If you don't mind sharing- what doctor is treating Leo? We hope Leo does great with his transition to the brace- I'll be you're anxious to get to the next phase! Regards- & (3-16-00) left clubfoot, switched to Ponseti method at 4 mo. old http://ponseticlubfoot.freeservers.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Welcome, & Leo- We're happy that you came out of " lurkdom " to introduce yourselves! Especially since you came out with a post full of good news! That's terrific! Thanks for sharing Leo's progress with us! When had her tenotomy, we had a similar positive experience- she wasn't very fussy at all! I'm glad everything went well for your little boy. If you don't mind sharing- what doctor is treating Leo? We hope Leo does great with his transition to the brace- I'll be you're anxious to get to the next phase! Regards- & (3-16-00) left clubfoot, switched to Ponseti method at 4 mo. old http://ponseticlubfoot.freeservers.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Welcome, & Leo- We're happy that you came out of " lurkdom " to introduce yourselves! Especially since you came out with a post full of good news! That's terrific! Thanks for sharing Leo's progress with us! When had her tenotomy, we had a similar positive experience- she wasn't very fussy at all! I'm glad everything went well for your little boy. If you don't mind sharing- what doctor is treating Leo? We hope Leo does great with his transition to the brace- I'll be you're anxious to get to the next phase! Regards- & (3-16-00) left clubfoot, switched to Ponseti method at 4 mo. old http://ponseticlubfoot.freeservers.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 Hello. My name is Rhudell. I am 51 and was diagnosed with neurosarcoidosis in 1996. I've been told that I've probably had it all my life. There have been many tests and treatments over the years but, I seem to have finally settled into 'my particular'cycle. I have been on several meds for all of the 9 years of treatment and have gone through a few others that were either not effective or, as in the case with Enbrel, unaffordable. I am a very lucky man. Once diagnosed, I responded positively to most treatments they've tried on me. I have gone from a high of constant intravenous drip of prednisone down to 20mg every other day. I'll give more detail of myself and my dealings with this illness in future writings. My experiences with other groups has taught me that no two " Sarco's " have all the same symptoms, or combination of symptoms (that goes double for treatments) so, I'm sure to enjoy exchanging info and stories with you all. Take good care, R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 --- rhudell_bbd Rhudell@...> wrote: > Hello. My name is Rhudell. I am 51 and was diagnosed > with > neurosarcoidosis in 1996. I've been told that I've > probably had it > all my life. There have been many tests and > treatments over the years > but, I seem to have finally settled into 'my > particular'cycle. I have > been on several meds for all of the 9 years of > treatment and have gone > through a few others that were either not effective > or, as in the > case with Enbrel, unaffordable. I am a very lucky > man. Once diagnosed, > I responded positively to most treatments they've > tried on me. I have > gone from a high of constant intravenous drip of > prednisone down to > 20mg every other day. I'll give more detail of > myself and my dealings > with this illness in future writings. My experiences > with other > groups has taught me that no two " Sarco's " have all > the same symptoms, > or combination of symptoms (that goes double for > treatments) so, I'm > sure to enjoy exchanging info and stories with you > all. > Take good care, > R > > Rhudell- Welcome to our group-looking forward to learning more about u and that u are able to get positive info about living with sarc from us. Take care matthew in Seattle > > __________________________________ Yahoo! Mail Mobile Take Yahoo! Mail with you! Check email on your mobile phone. http://mobile.yahoo.com/learn/mail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 --- rhudell_bbd Rhudell@...> wrote: > Hello. My name is Rhudell. I am 51 and was diagnosed > with > neurosarcoidosis in 1996. I've been told that I've > probably had it > all my life. There have been many tests and > treatments over the years > but, I seem to have finally settled into 'my > particular'cycle. I have > been on several meds for all of the 9 years of > treatment and have gone > through a few others that were either not effective > or, as in the > case with Enbrel, unaffordable. I am a very lucky > man. Once diagnosed, > I responded positively to most treatments they've > tried on me. I have > gone from a high of constant intravenous drip of > prednisone down to > 20mg every other day. I'll give more detail of > myself and my dealings > with this illness in future writings. My experiences > with other > groups has taught me that no two " Sarco's " have all > the same symptoms, > or combination of symptoms (that goes double for > treatments) so, I'm > sure to enjoy exchanging info and stories with you > all. > Take good care, > R > > Rhudell- Welcome to our group-looking forward to learning more about u and that u are able to get positive info about living with sarc from us. Take care matthew in Seattle > > __________________________________ Yahoo! Mail Mobile Take Yahoo! Mail with you! Check email on your mobile phone. http://mobile.yahoo.com/learn/mail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2008 Report Share Posted June 23, 2008 Genevieve Thanks for your thoughtful reply. I did use the search feature and learned a great deal over the weekend. You are an amazing group. george > > Hi , > > I'm so sorry that you had to find us under these circumstances-- > especially having to watch your own daughter go through yet another > disease--but I'm glad we can be here for you. > > I had UC my entire childhood, my J-pouch surgery when I was 18, and > now I'm 27, and was just diagnosed with PSC in December of 2007; so I > know a bit about being young and dealing with the curve balls being > thrown from these diseases. I know there are others on the board, my > age and your daughter's age, who are also dealing with fitting a new > aspect of themseslves into the plans they had for their lives. > > I think the most difficult aspect of this disease for me so far (even > though since December I've done nothing but 'deal with' the PSC, it > unfortunately hasn't been quiet for me since my dx) has been re- > evaluating the dreams I have for my future, now that I've had a > largely unknown element thrown into the mix--who knows what PSC holds > for me, and what that will mean for my plans? The emotional aspect > of the unknowns of this disease have been very difficult for me to > deal with, and I'm sure that is something your daughter will also > need support in reconciling. > > Something I am also having to 'deal with', having been a young person > with an abundance of energy and vitality until I started getting sick > (again) about a year ago, is finding a balance between living my > young life with all the activities I want to participate in and do > with my family and friends, yet allowing myself to be fragile, and be > treated as such, when I am feeling unwell. I hate being treated > differently--with kid gloves-- because of the PSC, but sometimes I do > have to put everything else on the back burner and allow myself to be > doted on for a bit until I am feeling well again. I hope your > daughter is able to say YES to people offering her help and care when > she needs it, as I am having to learn. > > Use the search function on this page to search for things you'd like > answers to, and I'm sure you'll find an abundance of messages on all > the topics you're wondering about. Feel free to ask us anything, > though, if you don't find your answers or there's too much > information to wade through. We have so many people from so many > different walks of life, with very different experiences with this > disease--there will always be someone to help put your mind at ease! > > Genevieve > UC 1983, J-Pouch 1999, PSC 12/07 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 Hi , I'm happy you found us. I can definitely relate to the days- on, days-off. Sometimes I too operate as if I don't have PSC. I don't _feel_ that I have it, but I _know_ it. There is a disconnect there. It's hard to switch identities from that of a healthy person to that of a sick person - and this is coming from someone whose had severe IBD for 8 years and has had her colon removed! I was diagnosed with PSC through an ERCP a few months ago, but I actually think I've had it since 2000 also, because I had an episode of highly elevated enzymes, jaundice, and fatigue back then that coincided with an attack of what they then thought was Crohn's (now they think it's been Ulcerative Colitis). All this to say the experience of not knowing your past or future, health-wise, is all too familiar to me! Welcome again. Ruth UC - 2000, Colectomy - 2007, PSC - 2008 (or 2000...) > > Hi all: > > I am new to the group and diagnosed with PSC in 2006. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 Hi , I'm happy you found us. I can definitely relate to the days- on, days-off. Sometimes I too operate as if I don't have PSC. I don't _feel_ that I have it, but I _know_ it. There is a disconnect there. It's hard to switch identities from that of a healthy person to that of a sick person - and this is coming from someone whose had severe IBD for 8 years and has had her colon removed! I was diagnosed with PSC through an ERCP a few months ago, but I actually think I've had it since 2000 also, because I had an episode of highly elevated enzymes, jaundice, and fatigue back then that coincided with an attack of what they then thought was Crohn's (now they think it's been Ulcerative Colitis). All this to say the experience of not knowing your past or future, health-wise, is all too familiar to me! Welcome again. Ruth UC - 2000, Colectomy - 2007, PSC - 2008 (or 2000...) > > Hi all: > > I am new to the group and diagnosed with PSC in 2006. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 Hi , I'm happy you found us. I can definitely relate to the days- on, days-off. Sometimes I too operate as if I don't have PSC. I don't _feel_ that I have it, but I _know_ it. There is a disconnect there. It's hard to switch identities from that of a healthy person to that of a sick person - and this is coming from someone whose had severe IBD for 8 years and has had her colon removed! I was diagnosed with PSC through an ERCP a few months ago, but I actually think I've had it since 2000 also, because I had an episode of highly elevated enzymes, jaundice, and fatigue back then that coincided with an attack of what they then thought was Crohn's (now they think it's been Ulcerative Colitis). All this to say the experience of not knowing your past or future, health-wise, is all too familiar to me! Welcome again. Ruth UC - 2000, Colectomy - 2007, PSC - 2008 (or 2000...) > > Hi all: > > I am new to the group and diagnosed with PSC in 2006. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 Hi , You sound a lot like my husband. He is 32 and was only diagnosed a few weeks ago but the doc suspects he has had PSC for a number of years. He too has on days and off days. Yesterday morning he was depressed and grumpy - when he finally opened up he told me he was just worried about having 'crook guts' and he's trying to do everything he can around the house (minor renovations etc) while he's still in a fit state. He too is on Ursodiol and is asymptomatic (apart from a bit of pain in the liver and spleen) at the moment but had a bout of jaundice in December 2007 which led to all the investigations and eventual diagnosis. He also has cirrhosis and portal hypertension so to hear that he is already at Stage 4 after not ever knowing he was at Stages 1-3 is very hard for him to accept and overcome. Doom and gloom aside, he is trying to remain positive and live life to the fullest and especially enjoy spending time with our young children, aged 1 and 3 yrs. As you said, it progresses differently with everyone. I keep asking the group about what we can expect and keep getting told the same thing! It would be nice to have some definitive answers but it's really a 'wait and see' disease. I'm glad you found this group - they have been an invaluable source of information and inspiration to me. I hope you have someone close to talk to and share your feelings, especially on those off days, but if not, there are always people here to listen. Kate Wife to Brad UC 1998/PSC 2008 > Hi all: > > I am new to the group and diagnosed with PSC in 2006. I am currently > 44 years old. Though I was diagnosed in 2006, my alk-phos levels > were noticeably elevated in 2000, after gall bladder removal, they > improved slightly but then began a slow increase. Finally in 2006, > an ERCP was performed that confirmed. Since then I've been on > Ursodiol and the counts decreased and have so far remained stable. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 Hi , You sound a lot like my husband. He is 32 and was only diagnosed a few weeks ago but the doc suspects he has had PSC for a number of years. He too has on days and off days. Yesterday morning he was depressed and grumpy - when he finally opened up he told me he was just worried about having 'crook guts' and he's trying to do everything he can around the house (minor renovations etc) while he's still in a fit state. He too is on Ursodiol and is asymptomatic (apart from a bit of pain in the liver and spleen) at the moment but had a bout of jaundice in December 2007 which led to all the investigations and eventual diagnosis. He also has cirrhosis and portal hypertension so to hear that he is already at Stage 4 after not ever knowing he was at Stages 1-3 is very hard for him to accept and overcome. Doom and gloom aside, he is trying to remain positive and live life to the fullest and especially enjoy spending time with our young children, aged 1 and 3 yrs. As you said, it progresses differently with everyone. I keep asking the group about what we can expect and keep getting told the same thing! It would be nice to have some definitive answers but it's really a 'wait and see' disease. I'm glad you found this group - they have been an invaluable source of information and inspiration to me. I hope you have someone close to talk to and share your feelings, especially on those off days, but if not, there are always people here to listen. Kate Wife to Brad UC 1998/PSC 2008 > Hi all: > > I am new to the group and diagnosed with PSC in 2006. I am currently > 44 years old. Though I was diagnosed in 2006, my alk-phos levels > were noticeably elevated in 2000, after gall bladder removal, they > improved slightly but then began a slow increase. Finally in 2006, > an ERCP was performed that confirmed. Since then I've been on > Ursodiol and the counts decreased and have so far remained stable. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 Hi , You sound a lot like my husband. He is 32 and was only diagnosed a few weeks ago but the doc suspects he has had PSC for a number of years. He too has on days and off days. Yesterday morning he was depressed and grumpy - when he finally opened up he told me he was just worried about having 'crook guts' and he's trying to do everything he can around the house (minor renovations etc) while he's still in a fit state. He too is on Ursodiol and is asymptomatic (apart from a bit of pain in the liver and spleen) at the moment but had a bout of jaundice in December 2007 which led to all the investigations and eventual diagnosis. He also has cirrhosis and portal hypertension so to hear that he is already at Stage 4 after not ever knowing he was at Stages 1-3 is very hard for him to accept and overcome. Doom and gloom aside, he is trying to remain positive and live life to the fullest and especially enjoy spending time with our young children, aged 1 and 3 yrs. As you said, it progresses differently with everyone. I keep asking the group about what we can expect and keep getting told the same thing! It would be nice to have some definitive answers but it's really a 'wait and see' disease. I'm glad you found this group - they have been an invaluable source of information and inspiration to me. I hope you have someone close to talk to and share your feelings, especially on those off days, but if not, there are always people here to listen. Kate Wife to Brad UC 1998/PSC 2008 > Hi all: > > I am new to the group and diagnosed with PSC in 2006. I am currently > 44 years old. Though I was diagnosed in 2006, my alk-phos levels > were noticeably elevated in 2000, after gall bladder removal, they > improved slightly but then began a slow increase. Finally in 2006, > an ERCP was performed that confirmed. Since then I've been on > Ursodiol and the counts decreased and have so far remained stable. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 , Welcome to the group. We are all different and so PSC progresses differently in each of us. Most of the information on the web is dated, but we were given a link to a recent article on PSC; http://www.pulsus.com/journals/abstract.jsp?sCurrPg=abstract & jnlKy=2 & atlKy=8237 & isuKy=802 & spage=0 & isArt=t & fromfold=Current Under " PROGNOSIS " it states " median transplant-free survival of 18 years " . That figure is much closer to my personal experience (I was diagnosed 19 years ago) than other documents I've seen that stated live expectancy of only 11-12 years. Ian (52) PSC 89 Hi all:I am new to the group and diagnosed with PSC in 2006. I am currently 44 years old. Though I was diagnosed in 2006, my alk-phos levels were noticeably elevated in 2000, after gall bladder removal, they improved slightly but then began a slow increase. Finally in 2006, an ERCP was performed that confirmed. Since then I've been on Ursodiol and the counts decreased and have so far remained stable.So far, I have shown no symptoms of the disease other than elevated enzymes.I currently do not go to a hepatologist (is that the correct term?) but now have a referral for one and will go soon. I also suffer from crohn's disease, but that has been in remission for eight years. I seem to have a wide range of emotions where I do my normal doctor visits, but carry on as nothing is wrong. Those are the days where I don't think of it at all. Then I have days where it's in the back of my mind and days where it's the only thing on my mind. Those days usually coincide with mild depression.I've read everything I can get my hands on and it all pretty much points to the same thing, but I also know that the disease progresses differently with individuals.I'm just happy to find a place where people can relate. -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 , Welcome to the group. We are all different and so PSC progresses differently in each of us. Most of the information on the web is dated, but we were given a link to a recent article on PSC; http://www.pulsus.com/journals/abstract.jsp?sCurrPg=abstract & jnlKy=2 & atlKy=8237 & isuKy=802 & spage=0 & isArt=t & fromfold=Current Under " PROGNOSIS " it states " median transplant-free survival of 18 years " . That figure is much closer to my personal experience (I was diagnosed 19 years ago) than other documents I've seen that stated live expectancy of only 11-12 years. Ian (52) PSC 89 Hi all:I am new to the group and diagnosed with PSC in 2006. I am currently 44 years old. Though I was diagnosed in 2006, my alk-phos levels were noticeably elevated in 2000, after gall bladder removal, they improved slightly but then began a slow increase. Finally in 2006, an ERCP was performed that confirmed. Since then I've been on Ursodiol and the counts decreased and have so far remained stable.So far, I have shown no symptoms of the disease other than elevated enzymes.I currently do not go to a hepatologist (is that the correct term?) but now have a referral for one and will go soon. I also suffer from crohn's disease, but that has been in remission for eight years. I seem to have a wide range of emotions where I do my normal doctor visits, but carry on as nothing is wrong. Those are the days where I don't think of it at all. Then I have days where it's in the back of my mind and days where it's the only thing on my mind. Those days usually coincide with mild depression.I've read everything I can get my hands on and it all pretty much points to the same thing, but I also know that the disease progresses differently with individuals.I'm just happy to find a place where people can relate. -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 , Welcome to the group. We are all different and so PSC progresses differently in each of us. Most of the information on the web is dated, but we were given a link to a recent article on PSC; http://www.pulsus.com/journals/abstract.jsp?sCurrPg=abstract & jnlKy=2 & atlKy=8237 & isuKy=802 & spage=0 & isArt=t & fromfold=Current Under " PROGNOSIS " it states " median transplant-free survival of 18 years " . That figure is much closer to my personal experience (I was diagnosed 19 years ago) than other documents I've seen that stated live expectancy of only 11-12 years. Ian (52) PSC 89 Hi all:I am new to the group and diagnosed with PSC in 2006. I am currently 44 years old. Though I was diagnosed in 2006, my alk-phos levels were noticeably elevated in 2000, after gall bladder removal, they improved slightly but then began a slow increase. Finally in 2006, an ERCP was performed that confirmed. Since then I've been on Ursodiol and the counts decreased and have so far remained stable.So far, I have shown no symptoms of the disease other than elevated enzymes.I currently do not go to a hepatologist (is that the correct term?) but now have a referral for one and will go soon. I also suffer from crohn's disease, but that has been in remission for eight years. I seem to have a wide range of emotions where I do my normal doctor visits, but carry on as nothing is wrong. Those are the days where I don't think of it at all. Then I have days where it's in the back of my mind and days where it's the only thing on my mind. Those days usually coincide with mild depression.I've read everything I can get my hands on and it all pretty much points to the same thing, but I also know that the disease progresses differently with individuals.I'm just happy to find a place where people can relate. -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2008 Report Share Posted August 26, 2008 , Welcome to the group. I'm sorry you had to find us, but very glad you did. Others have already posted great replies to your initial post, so there's not much else I can add. We all progress differently with PSC, yet we all share common feelings along the way. I usually forget about being sick until I'm reminded by a blood test or a queasy feeling after dinner (of course, that COULD be my attempt to cook Thai food, but that's another story altogether and not for this site!). There is quite a bit of history on this site and it's definitely worth searching and reading when you come upon questions, issues, etc. You'll find posts and replies about different medications, questions to ask the doctors (gastroenterologists, hepatologists, surgeons, et al.) When it's time for a doctor visit, or you have questions about your doc visits, don't hesitate to ask the group. There are many stories of great docs, not-so-great docs, and we handled them over the years. I guess what I'm saying is: All of may not reply every time to every post, but when we have the knowledge or can share experiences, we will. Hope this helps. Take care, and stay in touch! Severin - Houston, TX ********** Proud Dad of 4 (we need a new hobby!) Lucky Husband since 1995 PSC/UC 2007 Can't Cook Thai Food - since 2008 Quote Link to comment Share on other sites More sharing options...
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