Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Dear Lois,My son Bill was unable to get his colitis under control and he had a total colectomy and j pouch in June of 05.He does have pouchitis that is controlled by taking cipro everyday.Otherwise he is doing well and nothing has changed with his PSC.He went from taking about 40 pills a day including 16 asacol and immuran to taking just6 Ursodiol, 2 cipro, fish oil, flora Q [ a probiotic] and immodium as needed usually 3 or 4 a day.The biggest change was hitting the bathroom only about 4 to 6 times a day instead of a dozen times or more andwhen it was his choice to do so. He went from feeling ill all the time to feeling good and putting back on weight.The operation gave him his life back.Good luck with your decision.Lee mother of Bill PSC / UC/ 04 j-pouch 05My question is - has anyone of you with psc developed pre-cancerous changes in your colon and had the pouch operation rather than the ileostomy? Greg has been told he can have that done, but they aren't recommending it because people with psc have an extremely high chance of having pouchitis. The psc specialist said he has seen many people suffer horribly with pouchitis, but only Greg can decide if he wants to take that chance. He doesn't know what to do and has to tell the surgeon this week which operation he wants. Any input of your experiences would be helpful. Also- has colon removal affected the status of your psc (accelerated or slowed it down)? Thanks, Lois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Dear Lois,My son Bill was unable to get his colitis under control and he had a total colectomy and j pouch in June of 05.He does have pouchitis that is controlled by taking cipro everyday.Otherwise he is doing well and nothing has changed with his PSC.He went from taking about 40 pills a day including 16 asacol and immuran to taking just6 Ursodiol, 2 cipro, fish oil, flora Q [ a probiotic] and immodium as needed usually 3 or 4 a day.The biggest change was hitting the bathroom only about 4 to 6 times a day instead of a dozen times or more andwhen it was his choice to do so. He went from feeling ill all the time to feeling good and putting back on weight.The operation gave him his life back.Good luck with your decision.Lee mother of Bill PSC / UC/ 04 j-pouch 05My question is - has anyone of you with psc developed pre-cancerous changes in your colon and had the pouch operation rather than the ileostomy? Greg has been told he can have that done, but they aren't recommending it because people with psc have an extremely high chance of having pouchitis. The psc specialist said he has seen many people suffer horribly with pouchitis, but only Greg can decide if he wants to take that chance. He doesn't know what to do and has to tell the surgeon this week which operation he wants. Any input of your experiences would be helpful. Also- has colon removal affected the status of your psc (accelerated or slowed it down)? Thanks, Lois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Dear Lois,My son Bill was unable to get his colitis under control and he had a total colectomy and j pouch in June of 05.He does have pouchitis that is controlled by taking cipro everyday.Otherwise he is doing well and nothing has changed with his PSC.He went from taking about 40 pills a day including 16 asacol and immuran to taking just6 Ursodiol, 2 cipro, fish oil, flora Q [ a probiotic] and immodium as needed usually 3 or 4 a day.The biggest change was hitting the bathroom only about 4 to 6 times a day instead of a dozen times or more andwhen it was his choice to do so. He went from feeling ill all the time to feeling good and putting back on weight.The operation gave him his life back.Good luck with your decision.Lee mother of Bill PSC / UC/ 04 j-pouch 05My question is - has anyone of you with psc developed pre-cancerous changes in your colon and had the pouch operation rather than the ileostomy? Greg has been told he can have that done, but they aren't recommending it because people with psc have an extremely high chance of having pouchitis. The psc specialist said he has seen many people suffer horribly with pouchitis, but only Greg can decide if he wants to take that chance. He doesn't know what to do and has to tell the surgeon this week which operation he wants. Any input of your experiences would be helpful. Also- has colon removal affected the status of your psc (accelerated or slowed it down)? Thanks, Lois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 Lonnie, my husband, had PSC and UC since 1987. In December 2000, he had a full colon removal with J-pouch reconstruction in March 2001. He was/is on daily antibiotic for the chronic pouchitis. As long as he takes his medicine, his pouchitis is manageable. In June 2004, he had a liver transplant. The liver has been fine ever since. Feel free to contact me or Lonnie privately if you have questions. He's got great insight. Kathy wife of Lonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 I am in the same boat. I am having a colectomy in July. I met with the colon surgeion last week. She said I would have an ileostomy rather than the pouch because the pouch could break down due to my liver causing possible death. She also said that after I have a liver transplant it could be reversible after 6 months. I am also having a procedure done called TIPPS??? which is a stent being entered through the neck and placed somewhere by the liver to reduce dilation of the hyperportal arteries and spleen since my arteries are like Medusa snakes hopefully allowing the colectomy to be done laproscopically. Has anyone had that procedure? Patti Subject: colectomy and pscTo: Date: Sunday, June 8, 2008, 12:07 AM Hi all - I haven't posted on the site in a long time, but read the messages frequently. I know many of you have had ulcerative colitis in your past and some have had colectomies. Greg had an area of high dysplasia in his colon discovered at the last colonoscopy and his gastroenterologist recommended having his colon out (based on his history of 30 years of ulcerative colitis with many benign polyps). After a second opinion, he met with a liver transplant team of doctors - gastroenterologist, psc specialist, transplant surgeon and colon surgeon, and transplant coordinator. He has been placed on the list for a liver in the event his liver fails during the surgery to remove his colon. This is not really anticipated, however, since his liver has been doing very well.My question is - has anyone of you with psc developed pre-cancerous changes in your colon and had the pouch operation rather than the ileostomy? Greg has been told he can have that done, but they aren't recommending it because people with psc have an extremely high chance of having pouchitis. The psc specialist said he has seen many people suffer horribly with pouchitis, but only Greg can decide if he wants to take that chance. He doesn't know what to do and has to tell the surgeon this week which operation he wants. Any input of your experiences would be helpful. Also- has colon removal affected the status of your psc (accelerated or slowed it down)? Thanks, Lois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 , my name is Laurie . I am the wife of PSC patient (60 yearold)Kelley . He had the TIPPS procedure in Dec of 2006. He was awake and watched the radiologist and even talked with him as it occurred. It took about 6 hours. The good news is that he never felt anything and he has not had any varices bleeding since the Tipps and he has very little acites. However, the doctors said he would be very sleepy most of the time from now on..he has a hard time staying awake more than 3 or 4 hours at a time. He is not in pain and he takes nothing but a Tylenol once in a while. BUT, he sleeps and sleeps and sleeps. He drinks ENTEREX (like Ensure) for diabetics. This must be a good supplement because he has stayed at a 15 MELD score for a year now and he eats almost nothing. Although he is listed with UAMS of Little Rock, we are told that until he reaches 20 or higher , he will not get a transplant. Also, the doctors told us that the TIPPS would put Kelley at the top of the transplant list...WRONG. It has no effect on your transplant placement on the National List. Ask your doctors about what sort of energy level you will be left with after a Tipps. God Bless, Laurie > > From: mayhewgreg gmayhew@... > Subject: colectomy and psc > To: > Date: Sunday, June 8, 2008, 12:07 AM > > > > > > > Hi all - I haven't posted on the site in a long time, but read the > messages frequently. I know many of you have had ulcerative colitis > in your past and some have had colectomies. Greg had an area of high > dysplasia in his colon discovered at the last colonoscopy and his > gastroenterologist recommended having his colon out (based on his > history of 30 years of ulcerative colitis with many benign polyps). > After a second opinion, he met with a liver transplant team of > doctors - gastroenterologist, psc specialist, transplant surgeon and > colon surgeon, and transplant coordinator. He has been placed on the > list for a liver in the event his liver fails during the surgery to > remove his colon. This is not really anticipated, however, since his > liver has been doing very well. > My question is - has anyone of you with psc developed pre- cancerous > changes in your colon and had the pouch operation rather than the > ileostomy? Greg has been told he can have that done, but they aren't > recommending it because people with psc have an extremely high chance > of having pouchitis. The psc specialist said he has seen many people > suffer horribly with pouchitis, but only Greg can decide if he wants > to take that chance. He doesn't know what to do and has to tell the > surgeon this week which operation he wants. Any input of your > experiences would be helpful. Also- has colon removal affected the > status of your psc (accelerated or slowed it down)? Thanks, Lois > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 , my name is Laurie . I am the wife of PSC patient (60 yearold)Kelley . He had the TIPPS procedure in Dec of 2006. He was awake and watched the radiologist and even talked with him as it occurred. It took about 6 hours. The good news is that he never felt anything and he has not had any varices bleeding since the Tipps and he has very little acites. However, the doctors said he would be very sleepy most of the time from now on..he has a hard time staying awake more than 3 or 4 hours at a time. He is not in pain and he takes nothing but a Tylenol once in a while. BUT, he sleeps and sleeps and sleeps. He drinks ENTEREX (like Ensure) for diabetics. This must be a good supplement because he has stayed at a 15 MELD score for a year now and he eats almost nothing. Although he is listed with UAMS of Little Rock, we are told that until he reaches 20 or higher , he will not get a transplant. Also, the doctors told us that the TIPPS would put Kelley at the top of the transplant list...WRONG. It has no effect on your transplant placement on the National List. Ask your doctors about what sort of energy level you will be left with after a Tipps. God Bless, Laurie > > From: mayhewgreg gmayhew@... > Subject: colectomy and psc > To: > Date: Sunday, June 8, 2008, 12:07 AM > > > > > > > Hi all - I haven't posted on the site in a long time, but read the > messages frequently. I know many of you have had ulcerative colitis > in your past and some have had colectomies. Greg had an area of high > dysplasia in his colon discovered at the last colonoscopy and his > gastroenterologist recommended having his colon out (based on his > history of 30 years of ulcerative colitis with many benign polyps). > After a second opinion, he met with a liver transplant team of > doctors - gastroenterologist, psc specialist, transplant surgeon and > colon surgeon, and transplant coordinator. He has been placed on the > list for a liver in the event his liver fails during the surgery to > remove his colon. This is not really anticipated, however, since his > liver has been doing very well. > My question is - has anyone of you with psc developed pre- cancerous > changes in your colon and had the pouch operation rather than the > ileostomy? Greg has been told he can have that done, but they aren't > recommending it because people with psc have an extremely high chance > of having pouchitis. The psc specialist said he has seen many people > suffer horribly with pouchitis, but only Greg can decide if he wants > to take that chance. He doesn't know what to do and has to tell the > surgeon this week which operation he wants. Any input of your > experiences would be helpful. Also- has colon removal affected the > status of your psc (accelerated or slowed it down)? Thanks, Lois > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 , my name is Laurie . I am the wife of PSC patient (60 yearold)Kelley . He had the TIPPS procedure in Dec of 2006. He was awake and watched the radiologist and even talked with him as it occurred. It took about 6 hours. The good news is that he never felt anything and he has not had any varices bleeding since the Tipps and he has very little acites. However, the doctors said he would be very sleepy most of the time from now on..he has a hard time staying awake more than 3 or 4 hours at a time. He is not in pain and he takes nothing but a Tylenol once in a while. BUT, he sleeps and sleeps and sleeps. He drinks ENTEREX (like Ensure) for diabetics. This must be a good supplement because he has stayed at a 15 MELD score for a year now and he eats almost nothing. Although he is listed with UAMS of Little Rock, we are told that until he reaches 20 or higher , he will not get a transplant. Also, the doctors told us that the TIPPS would put Kelley at the top of the transplant list...WRONG. It has no effect on your transplant placement on the National List. Ask your doctors about what sort of energy level you will be left with after a Tipps. God Bless, Laurie > > From: mayhewgreg gmayhew@... > Subject: colectomy and psc > To: > Date: Sunday, June 8, 2008, 12:07 AM > > > > > > > Hi all - I haven't posted on the site in a long time, but read the > messages frequently. I know many of you have had ulcerative colitis > in your past and some have had colectomies. Greg had an area of high > dysplasia in his colon discovered at the last colonoscopy and his > gastroenterologist recommended having his colon out (based on his > history of 30 years of ulcerative colitis with many benign polyps). > After a second opinion, he met with a liver transplant team of > doctors - gastroenterologist, psc specialist, transplant surgeon and > colon surgeon, and transplant coordinator. He has been placed on the > list for a liver in the event his liver fails during the surgery to > remove his colon. This is not really anticipated, however, since his > liver has been doing very well. > My question is - has anyone of you with psc developed pre- cancerous > changes in your colon and had the pouch operation rather than the > ileostomy? Greg has been told he can have that done, but they aren't > recommending it because people with psc have an extremely high chance > of having pouchitis. The psc specialist said he has seen many people > suffer horribly with pouchitis, but only Greg can decide if he wants > to take that chance. He doesn't know what to do and has to tell the > surgeon this week which operation he wants. Any input of your > experiences would be helpful. Also- has colon removal affected the > status of your psc (accelerated or slowed it down)? Thanks, Lois > Quote Link to comment Share on other sites More sharing options...
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