Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 Hi , I am new to the group, also. Welcome. I am so sorry to hear about your husband's and your family's battle with UC and PSC. My son was diagnosed with UC and PSC at age 14. During his teen years, the PSC apparently went into remission. When he had his colon removed and a J-pouch constructed in 1999, there was no sign of PSC. This year, in March to be exact, the PSC returned in a severe way with jaundice, itching, nausea, fatique, and sleeplessness mostly due to the severe itching. So Joe had at least 10-15 years without PSC (I say that because we don't really know when it actually became active again, that is until he became symptomatic, because no doctor had checked for it for many, many years). Was your husband's diagnosis of PSC based merely on the elevated liver enzymes? Or were additional diagnostic tests performed? Hang in there! Chris mother of Joe (32), UC 1987, J-pouch 1999, PSC, acute pancreatitis 2006 PSC progression >I am new to the group. My husband was diagnosed with PSC nine years > ago. He was having his colon removed due to UC when they found he had > elavated liver enzymes. They then diagnosed him with PSC. About two > months after surgery his liver enzymes returned to near normal. He has > not taken any medication or treatments for PSC since then. He sees Dr > Lindor at Mayo every year. > > I am wondering if he actually has PSC. At the time of the diagnosis we > were told he would need a liver transplant eventually. We asked how > long and the Dr. said seven years was the longest he had had anyone go. > > Is it possible to live with PSC and never have any complications? We > feel like we have been living with a black cloud over our heads. > > We are also in the process of changing our health insurance due to my > job change. We are in the process of applying for insurance but I know > we are going to be rejected which means we will be purchasing state > mandated insurance after we Cobra our current plan. If anyone can give > me advice on this, I would really appreciate any advice I could get. > > We have four children ages 7,8,9 and 10. I am 42 and my husband is 40 > so we have a lot to consider. > > Thanks for listening > > Becky > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 Hi , I am new to the group, also. Welcome. I am so sorry to hear about your husband's and your family's battle with UC and PSC. My son was diagnosed with UC and PSC at age 14. During his teen years, the PSC apparently went into remission. When he had his colon removed and a J-pouch constructed in 1999, there was no sign of PSC. This year, in March to be exact, the PSC returned in a severe way with jaundice, itching, nausea, fatique, and sleeplessness mostly due to the severe itching. So Joe had at least 10-15 years without PSC (I say that because we don't really know when it actually became active again, that is until he became symptomatic, because no doctor had checked for it for many, many years). Was your husband's diagnosis of PSC based merely on the elevated liver enzymes? Or were additional diagnostic tests performed? Hang in there! Chris mother of Joe (32), UC 1987, J-pouch 1999, PSC, acute pancreatitis 2006 PSC progression >I am new to the group. My husband was diagnosed with PSC nine years > ago. He was having his colon removed due to UC when they found he had > elavated liver enzymes. They then diagnosed him with PSC. About two > months after surgery his liver enzymes returned to near normal. He has > not taken any medication or treatments for PSC since then. He sees Dr > Lindor at Mayo every year. > > I am wondering if he actually has PSC. At the time of the diagnosis we > were told he would need a liver transplant eventually. We asked how > long and the Dr. said seven years was the longest he had had anyone go. > > Is it possible to live with PSC and never have any complications? We > feel like we have been living with a black cloud over our heads. > > We are also in the process of changing our health insurance due to my > job change. We are in the process of applying for insurance but I know > we are going to be rejected which means we will be purchasing state > mandated insurance after we Cobra our current plan. If anyone can give > me advice on this, I would really appreciate any advice I could get. > > We have four children ages 7,8,9 and 10. I am 42 and my husband is 40 > so we have a lot to consider. > > Thanks for listening > > Becky > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 Hi , I am new to the group, also. Welcome. I am so sorry to hear about your husband's and your family's battle with UC and PSC. My son was diagnosed with UC and PSC at age 14. During his teen years, the PSC apparently went into remission. When he had his colon removed and a J-pouch constructed in 1999, there was no sign of PSC. This year, in March to be exact, the PSC returned in a severe way with jaundice, itching, nausea, fatique, and sleeplessness mostly due to the severe itching. So Joe had at least 10-15 years without PSC (I say that because we don't really know when it actually became active again, that is until he became symptomatic, because no doctor had checked for it for many, many years). Was your husband's diagnosis of PSC based merely on the elevated liver enzymes? Or were additional diagnostic tests performed? Hang in there! Chris mother of Joe (32), UC 1987, J-pouch 1999, PSC, acute pancreatitis 2006 PSC progression >I am new to the group. My husband was diagnosed with PSC nine years > ago. He was having his colon removed due to UC when they found he had > elavated liver enzymes. They then diagnosed him with PSC. About two > months after surgery his liver enzymes returned to near normal. He has > not taken any medication or treatments for PSC since then. He sees Dr > Lindor at Mayo every year. > > I am wondering if he actually has PSC. At the time of the diagnosis we > were told he would need a liver transplant eventually. We asked how > long and the Dr. said seven years was the longest he had had anyone go. > > Is it possible to live with PSC and never have any complications? We > feel like we have been living with a black cloud over our heads. > > We are also in the process of changing our health insurance due to my > job change. We are in the process of applying for insurance but I know > we are going to be rejected which means we will be purchasing state > mandated insurance after we Cobra our current plan. If anyone can give > me advice on this, I would really appreciate any advice I could get. > > We have four children ages 7,8,9 and 10. I am 42 and my husband is 40 > so we have a lot to consider. > > Thanks for listening > > Becky > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 He has had two liver biopsies and the scope (ERCP-I think that is what is called) Liver biopsies were normal, the scoped showed slight narrowing of bile ducts. He has a iliostomy because the pouch surgery was unsuccessful. PSC progression>I am new to the group. My husband was diagnosed with PSC nine years> ago. He was having his colon removed due to UC when they found he had> elavated liver enzymes. They then diagnosed him with PSC. About two> months after surgery his liver enzymes returned to near normal. He has> not taken any medication or treatments for PSC since then. He sees Dr> Lindor at Mayo every year.>> I am wondering if he actually has PSC. At the time of the diagnosis we> were told he would need a liver transplant eventually. We asked how> long and the Dr. said seven years was the longest he had had anyone go.>> Is it possible to live with PSC and never have any complications? We> feel like we have been living with a black cloud over our heads.>> We are also in the process of changing our health insurance due to my> job change. We are in the process of applying for insurance but I know> we are going to be rejected which means we will be purchasing state> mandated insurance after we Cobra our current plan. If anyone can give> me advice on this, I would really appreciate any advice I could get.>> We have four children ages 7,8,9 and 10. I am 42 and my husband is 40> so we have a lot to consider.>> Thanks for listening>> Becky>>>>>>>>>>>>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 He has had two liver biopsies and the scope (ERCP-I think that is what is called) Liver biopsies were normal, the scoped showed slight narrowing of bile ducts. He has a iliostomy because the pouch surgery was unsuccessful. PSC progression>I am new to the group. My husband was diagnosed with PSC nine years> ago. He was having his colon removed due to UC when they found he had> elavated liver enzymes. They then diagnosed him with PSC. About two> months after surgery his liver enzymes returned to near normal. He has> not taken any medication or treatments for PSC since then. He sees Dr> Lindor at Mayo every year.>> I am wondering if he actually has PSC. At the time of the diagnosis we> were told he would need a liver transplant eventually. We asked how> long and the Dr. said seven years was the longest he had had anyone go.>> Is it possible to live with PSC and never have any complications? We> feel like we have been living with a black cloud over our heads.>> We are also in the process of changing our health insurance due to my> job change. We are in the process of applying for insurance but I know> we are going to be rejected which means we will be purchasing state> mandated insurance after we Cobra our current plan. If anyone can give> me advice on this, I would really appreciate any advice I could get.>> We have four children ages 7,8,9 and 10. I am 42 and my husband is 40> so we have a lot to consider.>> Thanks for listening>> Becky>>>>>>>>>>>>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 He has had two liver biopsies and the scope (ERCP-I think that is what is called) Liver biopsies were normal, the scoped showed slight narrowing of bile ducts. He has a iliostomy because the pouch surgery was unsuccessful. PSC progression>I am new to the group. My husband was diagnosed with PSC nine years> ago. He was having his colon removed due to UC when they found he had> elavated liver enzymes. They then diagnosed him with PSC. About two> months after surgery his liver enzymes returned to near normal. He has> not taken any medication or treatments for PSC since then. He sees Dr> Lindor at Mayo every year.>> I am wondering if he actually has PSC. At the time of the diagnosis we> were told he would need a liver transplant eventually. We asked how> long and the Dr. said seven years was the longest he had had anyone go.>> Is it possible to live with PSC and never have any complications? We> feel like we have been living with a black cloud over our heads.>> We are also in the process of changing our health insurance due to my> job change. We are in the process of applying for insurance but I know> we are going to be rejected which means we will be purchasing state> mandated insurance after we Cobra our current plan. If anyone can give> me advice on this, I would really appreciate any advice I could get.>> We have four children ages 7,8,9 and 10. I am 42 and my husband is 40> so we have a lot to consider.>> Thanks for listening>> Becky>>>>>>>>>>>>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 Becky, Dr Lindor is one of the top PSC specialists in the world, so if he is seeing your husband yearly then I presume he has appropriate testing done to monitor his status. As testing for and diagnosis of PSC becomes more common, more cases of mild, slowly progressing, asymptomatic PSC appear. Your husband may be such a case. I would ask Dr Lindor what his current estimate is of how your husband's PSC will progress. Its obvious that the 7 year estimate made 9 years ago was low. Continued insurance coverage shouldn't be a problem as long as you done let coverage lapse. Portability laws require that existing conditions be covered when switching from one insurer to another. Hope you can get some information that will drive the black cloud away and let you enjoy the sunshine of your life. Remember most people that post here are the ones having to deal with the problems that can come with PSC. If there is nothing going on there is not much incentive to remain actively involved. So I think if we were to poll the membership we would not see many cases that never had complications. Regards, Tim R > > I am new to the group. My husband was diagnosed with PSC nine years > ago. He was having his colon removed due to UC when they found he had > elavated liver enzymes. They then diagnosed him with PSC. About two > months after surgery his liver enzymes returned to near normal. He has > not taken any medication or treatments for PSC since then. He sees Dr > Lindor at Mayo every year. > > I am wondering if he actually has PSC. At the time of the diagnosis we > were told he would need a liver transplant eventually. We asked how > long and the Dr. said seven years was the longest he had had anyone go. > > Is it possible to live with PSC and never have any complications? We > feel like we have been living with a black cloud over our heads. > > We are also in the process of changing our health insurance due to my > job change. We are in the process of applying for insurance but I know > we are going to be rejected which means we will be purchasing state > mandated insurance after we Cobra our current plan. If anyone can give > me advice on this, I would really appreciate any advice I could get. > > We have four children ages 7,8,9 and 10. I am 42 and my husband is 40 > so we have a lot to consider. > > Thanks for listening > > Becky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 Becky, Dr Lindor is one of the top PSC specialists in the world, so if he is seeing your husband yearly then I presume he has appropriate testing done to monitor his status. As testing for and diagnosis of PSC becomes more common, more cases of mild, slowly progressing, asymptomatic PSC appear. Your husband may be such a case. I would ask Dr Lindor what his current estimate is of how your husband's PSC will progress. Its obvious that the 7 year estimate made 9 years ago was low. Continued insurance coverage shouldn't be a problem as long as you done let coverage lapse. Portability laws require that existing conditions be covered when switching from one insurer to another. Hope you can get some information that will drive the black cloud away and let you enjoy the sunshine of your life. Remember most people that post here are the ones having to deal with the problems that can come with PSC. If there is nothing going on there is not much incentive to remain actively involved. So I think if we were to poll the membership we would not see many cases that never had complications. Regards, Tim R > > I am new to the group. My husband was diagnosed with PSC nine years > ago. He was having his colon removed due to UC when they found he had > elavated liver enzymes. They then diagnosed him with PSC. About two > months after surgery his liver enzymes returned to near normal. He has > not taken any medication or treatments for PSC since then. He sees Dr > Lindor at Mayo every year. > > I am wondering if he actually has PSC. At the time of the diagnosis we > were told he would need a liver transplant eventually. We asked how > long and the Dr. said seven years was the longest he had had anyone go. > > Is it possible to live with PSC and never have any complications? We > feel like we have been living with a black cloud over our heads. > > We are also in the process of changing our health insurance due to my > job change. We are in the process of applying for insurance but I know > we are going to be rejected which means we will be purchasing state > mandated insurance after we Cobra our current plan. If anyone can give > me advice on this, I would really appreciate any advice I could get. > > We have four children ages 7,8,9 and 10. I am 42 and my husband is 40 > so we have a lot to consider. > > Thanks for listening > > Becky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 Becky, Dr Lindor is one of the top PSC specialists in the world, so if he is seeing your husband yearly then I presume he has appropriate testing done to monitor his status. As testing for and diagnosis of PSC becomes more common, more cases of mild, slowly progressing, asymptomatic PSC appear. Your husband may be such a case. I would ask Dr Lindor what his current estimate is of how your husband's PSC will progress. Its obvious that the 7 year estimate made 9 years ago was low. Continued insurance coverage shouldn't be a problem as long as you done let coverage lapse. Portability laws require that existing conditions be covered when switching from one insurer to another. Hope you can get some information that will drive the black cloud away and let you enjoy the sunshine of your life. Remember most people that post here are the ones having to deal with the problems that can come with PSC. If there is nothing going on there is not much incentive to remain actively involved. So I think if we were to poll the membership we would not see many cases that never had complications. Regards, Tim R > > I am new to the group. My husband was diagnosed with PSC nine years > ago. He was having his colon removed due to UC when they found he had > elavated liver enzymes. They then diagnosed him with PSC. About two > months after surgery his liver enzymes returned to near normal. He has > not taken any medication or treatments for PSC since then. He sees Dr > Lindor at Mayo every year. > > I am wondering if he actually has PSC. At the time of the diagnosis we > were told he would need a liver transplant eventually. We asked how > long and the Dr. said seven years was the longest he had had anyone go. > > Is it possible to live with PSC and never have any complications? We > feel like we have been living with a black cloud over our heads. > > We are also in the process of changing our health insurance due to my > job change. We are in the process of applying for insurance but I know > we are going to be rejected which means we will be purchasing state > mandated insurance after we Cobra our current plan. If anyone can give > me advice on this, I would really appreciate any advice I could get. > > We have four children ages 7,8,9 and 10. I am 42 and my husband is 40 > so we have a lot to consider. > > Thanks for listening > > Becky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 If your husband has had insurance, and the coverage does NOT overlap-meaning he isn't without coverage at any point, you will have a better chance of getting insurance. That is what we were told by a couple different independent ins. agents when we were trying to get my brother health ins. Unfortunately that didn't work for him. Good luck! Brother, 30, UC & PSC - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 If your husband has had insurance, and the coverage does NOT overlap-meaning he isn't without coverage at any point, you will have a better chance of getting insurance. That is what we were told by a couple different independent ins. agents when we were trying to get my brother health ins. Unfortunately that didn't work for him. Good luck! Brother, 30, UC & PSC - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 There is some evidence that there are a LOT more people with PSC than currently thought - just much more slower developing. I was diagnosed with PSC in 2000, and have been symptom-free since 2001. Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ From: [mailto: ] On Behalf Of rebeccasmith41 ....Is it possible to live with PSC and never have any complications? We feel like we have been living with a black cloud over our heads... Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 We see Dr Lindor at Mayo every year. We live in Iowa, about four hours away from Rochester. My husband hates to go because he thinks it is a waste of time. I say you need to keep up and make sure their has been no progression. We are scheduled for July 10th this year. RE: PSC progression There is some evidence that there are a LOT more people with PSC than currently thought - just much more slower developing. I was diagnosed with PSC in 2000, and have been symptom-free since 2001. Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ From: [mailto: ] On Behalf Of rebeccasmith41 ....Is it possible to live with PSC and never have any complications? We feel like we have been living with a black cloud over our heads... Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 We see Dr Lindor at Mayo every year. We live in Iowa, about four hours away from Rochester. My husband hates to go because he thinks it is a waste of time. I say you need to keep up and make sure their has been no progression. We are scheduled for July 10th this year. RE: PSC progression There is some evidence that there are a LOT more people with PSC than currently thought - just much more slower developing. I was diagnosed with PSC in 2000, and have been symptom-free since 2001. Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ From: [mailto: ] On Behalf Of rebeccasmith41 ....Is it possible to live with PSC and never have any complications? We feel like we have been living with a black cloud over our heads... Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 We see Dr Lindor at Mayo every year. We live in Iowa, about four hours away from Rochester. My husband hates to go because he thinks it is a waste of time. I say you need to keep up and make sure their has been no progression. We are scheduled for July 10th this year. RE: PSC progression There is some evidence that there are a LOT more people with PSC than currently thought - just much more slower developing. I was diagnosed with PSC in 2000, and have been symptom-free since 2001. Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ From: [mailto: ] On Behalf Of rebeccasmith41 ....Is it possible to live with PSC and never have any complications? We feel like we have been living with a black cloud over our heads... Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 This is my first posting. I've been reading the messages for about a week and it just blows my mind what people are going through and what I will eventually have to face. I was diagnosed with PSC in 2004 after gallbladder surgery and ERCP. I was sent to Mayo for the transplant evaluation which turned out to be premature. I haven't had any symptoms since, but they told me 3-5 years before I would need to be put on " the list " . I go to my MD for Ultrasound and blood test once a year, but I have read that I should request to be tested every 3 months because things can change that fast. What's the general consensus on how often you should be tested? > > We see Dr Lindor at Mayo every year. We live in Iowa, about four hours away from Rochester. My husband hates to go because he thinks it is a waste of time. I say you need to keep up and make sure their has been no progression. We are scheduled for July 10th this year. > > > RE: PSC progression > > > > There is some evidence that there are a LOT more people with PSC than currently thought - just much more slower developing. I was diagnosed with PSC in 2000, and have been symptom-free since 2001. > > > > Arne > 55 - UC 1977, PSC 2000 > Alive and (mostly) well in Minnesota > > ________________________________ > > From: [mailto:psc- support ] On Behalf Of rebeccasmith41 > > ...Is it possible to live with PSC and never have any complications? We feel like we have been living with a black cloud over our heads... > > Becky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 This is my first posting. I've been reading the messages for about a week and it just blows my mind what people are going through and what I will eventually have to face. I was diagnosed with PSC in 2004 after gallbladder surgery and ERCP. I was sent to Mayo for the transplant evaluation which turned out to be premature. I haven't had any symptoms since, but they told me 3-5 years before I would need to be put on " the list " . I go to my MD for Ultrasound and blood test once a year, but I have read that I should request to be tested every 3 months because things can change that fast. What's the general consensus on how often you should be tested? > > We see Dr Lindor at Mayo every year. We live in Iowa, about four hours away from Rochester. My husband hates to go because he thinks it is a waste of time. I say you need to keep up and make sure their has been no progression. We are scheduled for July 10th this year. > > > RE: PSC progression > > > > There is some evidence that there are a LOT more people with PSC than currently thought - just much more slower developing. I was diagnosed with PSC in 2000, and have been symptom-free since 2001. > > > > Arne > 55 - UC 1977, PSC 2000 > Alive and (mostly) well in Minnesota > > ________________________________ > > From: [mailto:psc- support ] On Behalf Of rebeccasmith41 > > ...Is it possible to live with PSC and never have any complications? We feel like we have been living with a black cloud over our heads... > > Becky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 This is my first posting. I've been reading the messages for about a week and it just blows my mind what people are going through and what I will eventually have to face. I was diagnosed with PSC in 2004 after gallbladder surgery and ERCP. I was sent to Mayo for the transplant evaluation which turned out to be premature. I haven't had any symptoms since, but they told me 3-5 years before I would need to be put on " the list " . I go to my MD for Ultrasound and blood test once a year, but I have read that I should request to be tested every 3 months because things can change that fast. What's the general consensus on how often you should be tested? > > We see Dr Lindor at Mayo every year. We live in Iowa, about four hours away from Rochester. My husband hates to go because he thinks it is a waste of time. I say you need to keep up and make sure their has been no progression. We are scheduled for July 10th this year. > > > RE: PSC progression > > > > There is some evidence that there are a LOT more people with PSC than currently thought - just much more slower developing. I was diagnosed with PSC in 2000, and have been symptom-free since 2001. > > > > Arne > 55 - UC 1977, PSC 2000 > Alive and (mostly) well in Minnesota > > ________________________________ > > From: [mailto:psc- support ] On Behalf Of rebeccasmith41 > > ...Is it possible to live with PSC and never have any complications? We feel like we have been living with a black cloud over our heads... > > Becky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 I will go out on a limb here and post this message from one of the docs I have been discussing my son’s care with and I asked him for general recommendations on what the surveillance should be. Here were his recommendations including IBD: Surveillance for IBD involves yearly colonoscopy with pan colonic biopsy starting after 7 years of documented disease. This is best done by a pediatric gastroenterologist. Surveillance for PSC is more controversial. I like to image the liver with U/S or CT every 2 years early in the disease course and 1yr later in the disease course. I also like to screen with tumor markers CEA and CA19-9 every 6 months later in the disease course (5yrs). I do not screen with ERCP but use it to treat symptomatic jaundice or cholestasis or to evaluate a rapid deterioration in liver function. I also check LFT Alb PLT INR every 6 mos. An upper endoscopy every year is used to screen patients with cirrhosis for the development of varicies. I also use ursodiol at 30mg/kg (high dose). A MVI every day is also a good idea. Now, don’t freak with the talk of cirrhosis. My son has cirrhosis confirmed by liver biopsy so this was part of my question about what surveillance he required. I hope this helps. Mom of Zoe (13) My very normal (teenager normal) soccer player; Noah (8) Indeterminate colitis, PSC, Osteopenia (1-4 lumbar vertebrae); Aidan (4 1/2) Moderately-severe SNHL bilaterally Recycle Yourself Become an Organ Donor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 I will go out on a limb here and post this message from one of the docs I have been discussing my son’s care with and I asked him for general recommendations on what the surveillance should be. Here were his recommendations including IBD: Surveillance for IBD involves yearly colonoscopy with pan colonic biopsy starting after 7 years of documented disease. This is best done by a pediatric gastroenterologist. Surveillance for PSC is more controversial. I like to image the liver with U/S or CT every 2 years early in the disease course and 1yr later in the disease course. I also like to screen with tumor markers CEA and CA19-9 every 6 months later in the disease course (5yrs). I do not screen with ERCP but use it to treat symptomatic jaundice or cholestasis or to evaluate a rapid deterioration in liver function. I also check LFT Alb PLT INR every 6 mos. An upper endoscopy every year is used to screen patients with cirrhosis for the development of varicies. I also use ursodiol at 30mg/kg (high dose). A MVI every day is also a good idea. Now, don’t freak with the talk of cirrhosis. My son has cirrhosis confirmed by liver biopsy so this was part of my question about what surveillance he required. I hope this helps. Mom of Zoe (13) My very normal (teenager normal) soccer player; Noah (8) Indeterminate colitis, PSC, Osteopenia (1-4 lumbar vertebrae); Aidan (4 1/2) Moderately-severe SNHL bilaterally Recycle Yourself Become an Organ Donor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 -----Original Message-----On Behalf Of psmorri61 it just blows my mind what people are going through and what I will eventually have to face. You can take comfort in knowing that no two people with PSC go through exactly the same course of symptoms. Many remain asymptomatic, or with just a few symptoms, right up to transplant. A lot of people posting have problems or questions, so it reads like everyone is sick, but we have far more group members who just read & are doing very well, we just don’t hear from them, because they are well. So it may seem like you are in for a lot of trouble, when you very well, may not be. HTH. I haven't had any symptoms since, but they told me 3-5 years before I would need to be put on " the list " . Many people go a very long time before they are listed. Because everyone’s disease progresses so differently, no one can give you an exact time line. I go to my MD for Ultrasound and blood test once a year, but I have read that I should request to be tested every 3 months because things can change that fast. Once a year is good, if & that’s a big if, you have a problem or a new symptom that is bothering you, you can always call for an earlier appointment. We had someone tell us that my son should be tested every 3 months & we went along with it. That was a huge mistake, it was so unnecessary, cost way too much $$, & wore his veins out. He was stage 4 cirrhosis when “someone” told us to do this. (By the way, that was 6 years ago!) This disease does NOT change that fast, it progresses very slowly. Don’t worry, if you become sick, you’ll be the first person to know it & you’ll have plenty of time to take care of business. Sounds like you have a good team of doctors in place, trust them. If your doctor was in error, the good folks at Mayo, would have told him. Welcome to the group, Barb in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 > What are varicies and ascites? I've heard them mentioned, and know > does not have them, but since they seem to be a possiblity for > him at some point, I figured I should find out what they are. > Varicies are swollen veins (usually in the esophagus) that are cause by portal hypertension. Portal hypertension can occur when cirrhosis restricts the flow of blood through the liver, causing it to back up and produce ballooning in the portal venous system. If the varicies rupture the resulting blood loss can be fatal. Such a rupture is often referred to as a " bleed " and may cause vomiting up large quanties of blood. Varicies are monitored by an endoscopic examination of the esophagus (basically the first part of an ERCP) and controlled by banding, sclerotherapy or beta blockers to reduce portal pressure. http://www.mayoclinic.com/health/esophageal-varices/AN00991 http://www.gastromd.com/education/esophagealvarices.html http://www.emedicine.com/med/topic745.htm Ascites is the accumulation of fluid within the abdominal cavity. This causes the swollen belly appearance of patients with end stage liver disease. http://www.emedicine.com/med/topic173.htm > Also, I'm a little confused in certain situations when they > consinder " later in the disease course " . Do they mean from when > when diagnosed or when disease may have actually began? > already had many many strictures and cirrhosis by the time his PSC > was discovered last fall. Later in the disease course refers to the total time from inception to complete liver failure. Typically early in the course of PSC there are no external symptoms, only elevated liver enzymes. As PSC progresses, strictures become evident in the bile ducts when viewed with ERCP or MRCP. Fatigue, blockages, jaundice, itching and cholangitis may appear, followed by other complication such as portal hypertension, edema, ascities, hepatic encephalopathy, muscle weakness and wasting. Histological examination (looking at tissue under the microscope) of liver biopsy will show the liver progressing from Stage I, minor damage with inflammatory cells surrounding bile ducts, to Stage II, evidence of fibrosis, then Stage III with bridging fibrosis or scarring, finally to Stage IV, cirrhosis. The histological stages may or may not correspond well with the overt symptoms. All the factors are taken into consideration when determining where in the course of PSC you happen to be. Tim R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 It depends. When I was first diagnosed, I had LFTs done every 3 months, with US, colonoscopy and bone density once/year. With no symptoms since 2001, I now get LFTs every 6 months, no annual US or bone density test. Still get an annual colonoscopy, however. Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ From: [mailto: ] On Behalf Of psmorri61 ....I go to my MD for Ultrasound and blood test once a year, but I have read that I should request to be tested every 3 months because things can change that fast. What's the general consensus on how often you should be tested? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 It depends. When I was first diagnosed, I had LFTs done every 3 months, with US, colonoscopy and bone density once/year. With no symptoms since 2001, I now get LFTs every 6 months, no annual US or bone density test. Still get an annual colonoscopy, however. Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ From: [mailto: ] On Behalf Of psmorri61 ....I go to my MD for Ultrasound and blood test once a year, but I have read that I should request to be tested every 3 months because things can change that fast. What's the general consensus on how often you should be tested? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 must be stage 4, then, as he has bridging fibrosis and cirrhosis. His one GI said he's probably had this for 10 years. I pointed out that 's only 8, to which he said "that tells you how bad it is, then". That being the case, I'm just being thankful he's not in liver failure at this point. AmiTim Romlein wrote: > What are varicies and ascites? I've heard them mentioned, and know> does not have them, but since they seem to be a possiblity for> him at some point, I figured I should find out what they are.>Varicies are swollen veins (usually in the esophagus) that are causeby portal hypertension. Portal hypertension can occur when cirrhosisrestricts the flow of blood through the liver, causing it to back upand produce ballooning in the portal venous system. If the variciesrupture the resulting blood loss can be fatal. Such a rupture is oftenreferred to as a "bleed" and may cause vomiting up large quanties ofblood. Varicies are monitored by an endoscopic examination of theesophagus (basically the first part of an ERCP) and controlled bybanding, sclerotherapy or beta blockers to reduce portal pressure.http://www.mayoclinic.com/health/esophageal-varices/AN00991http://www.gastromd.com/education/esophagealvarices.htmlhttp://www.emedicine.com/med/topic745.htmAscites is the accumulation of fluid within the abdominal cavity. Thiscauses the swollen belly appearance of patients with end stage liverdisease. http://www.emedicine.com/med/topic173.htm> Also, I'm a little confused in certain situations when they> consinder "later in the disease course". Do they mean from when> when diagnosed or when disease may have actually began? > already had many many strictures and cirrhosis by the time his PSC> was discovered last fall.Later in the disease course refers to the total time from inception tocomplete liver failure. Typically early in the course of PSC there areno external symptoms, only elevated liver enzymes. As PSC progresses,strictures become evident in the bile ducts when viewed with ERCP orMRCP. Fatigue, blockages, jaundice, itching and cholangitis mayappear, followed by other complication such as portal hypertension,edema, ascities, hepatic encephalopathy, muscle weakness and wasting.Histological examination (looking at tissue under the microscope) ofliver biopsy will show the liver progressing from Stage I, minordamage with inflammatory cells surrounding bile ducts, to Stage II,evidence of fibrosis, then Stage III with bridging fibrosis orscarring, finally to Stage IV, cirrhosis. The histological stages mayor may not correspond well with the overt symptoms. All the factorsare taken into consideration when determining where in the course ofPSC you happen to be.Tim R Want to be your own boss? Learn how on Yahoo! Small Business. Quote Link to comment Share on other sites More sharing options...
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