Guest guest Posted March 3, 2009 Report Share Posted March 3, 2009 So I have met with my primary care, my gi dr, transplant surgeon, colorectal surgeon, hep dr etc and everyone has told me to have this wonderfully fun surgery done. My colorectal surgeon told me after a transplant my uc (severe pancolitis) will " blow up " and take away from the healing process of my liver. He actually said BLOW UP. So I scheduled my surgery for April 17 with a lot of thinking, this is probably the best thing to do. I know with PSC my risk of pouchitis will be much higher etc. My PSC is between stage 2 and 3. They told me prob about 10 years for transplant if my ERCP's are not suspicious (they have been) and FISH tests remain negative. Have other people been told this? I remember some have a jpouch. I just want some reinforcement I guess. I won't be changing my mind, I just want to be reassured. Thanks guys! Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2009 Report Share Posted March 3, 2009 Dear Holly; This must be a tough decision. The only reinforcement I can give you is that studies in England suggest that the recurrence rate of PSC after transplant is lower in those who have had a colectomy: _____________________ Liver Transpl. 15: 330-340 (2009) A re-evaluation of the risk factors for the recurrence of primary sclerosing cholangitis in liver allografts. Alabraba E, Nightingale P, Gunson B, Hubscher S, Olliff S, Mirza D, Neuberger J Liver Unit, University Hospital Birmingham NHS Foundation Trust, Birmingham, United Kingdom. Previously, we have found that the absence of the colon after liver transplantation (LT) protects the patient from recurrent primary sclerosing cholangitis (rPSC). As our previous observation has not been confirmed in other series, we have reviewed our cohort of patients grafted for primary sclerosing cholangitis (PSC) with greater numbers and longer follow-up to reassess the rate, consequences, and risk factors for rPSC. We collected data on patients who underwent LT for PSC between January 1986 and April 2006. Data were collected for cytomegalovirus status, inflammatory bowel disease status, time of colectomy, type of colectomy, donor-recipient gender mismatch, recipient sex, extended donor criteria (EDC), and donor risk index. Accepted criteria were used to diagnose rPSC. Of a total of 230 consecutive adult patients, 61 (27%) underwent colectomy pre-/peri-LT, and 54 (23.5%) developed rPSC at a median of 4.6 (range, 0.5-12.9) years post-LT. A total of 263 deceased donor grafts were used, and 73 were EDC grafts. A diagnosis of rPSC was made in 61 of the 263 grafts (23%). The recurrence-free patient survival was significantly better (P < 0.05) in patients who underwent pre-/peri-LT colectomy and in those with non-EDC grafts. In conclusion, in this larger cohort of 230 patients and with longer follow-up of 82.5 (range, 0.0-238.6) months [in comparison with the previous report of 152 recipients with a follow-up of 52.8 (range, 1-146) months], we have shown that colectomy remains a significant risk factor for rPSC and that colectomy before and during initial LT for PSC confers a protective effect against rPSC in subsequent graft(s). Moreover, we have shown that EDC grafts are also a significant risk factor for rPSC. PMID: 19243003. ______________________ and there is some evidence to suggest that ulcerative colitis can have a more aggressive course after liver transplantation: __________________________ Gut 43: 639-644 (1998) Ulcerative colitis has an aggressive course after orthotopic liver transplantation for primary sclerosing cholangitis. Papatheodoridis GV, Hamilton M, Mistry PK, son B, Rolles K, Burroughs AK Liver Transplantation and Hepatobiliary Medicine, Royal Free Hospital, London, UK. BACKGROUND: The course of inflammatory bowel disease after liver transplantation has been reported as variable with usually no change or improvement, but there may be an increased risk of early colorectal neoplasms. In many centres steroids are often withdrawn early after transplantation and this may affect inflammatory bowel disease activity. AIMS: To evaluate the course of inflammatory bowel disease in primary sclerosing cholangitis transplant patients who were treated without long term steroids. METHODS: Between 1989 and 1996, there were 30 patients transplanted for primary sclerosing cholangitis who survived more than 12 months. Ulcerative colitis was diagnosed in 18 (60%) patients before transplantation; two had previous colectomy. All patients underwent colonoscopy before and after transplantation and were followed for 38 (12-92) months. All received cyclosporin or tacrolimus with or without azathioprine as maintenance immunosuppression. RESULTS: Ulcerative colitis course after transplantation compared with that up to five years before transplantation was the same in eight (50%) and worse in eight (50%) patients. It remained quiescent in eight and worsened in four of the 12 patients with pretransplant quiescent course, whereas it worsened in all four patients with pretransplant active course (p=0.08). New onset ulcerative colitis developed in three (25%) of the 12 patients without inflammatory bowel disease before transplantation. No colorectal cancer has been diagnosed to date. CONCLUSIONS: Preexisting ulcerative colitis often has an aggressive course, while de novo ulcerative colitis may develop in patients transplanted for primary sclerosing cholangitis and treated without long term steroids. PMID: 9824344. __________________________ I'm guessing that this is what your doctor meant about the colitis " blowing up " after liver transplantation. Best regards, Dave (father of (23); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 I assume that this confirms that cholangitis plays a significant role in causing PSC if removing a colon helps prevent problems with the liver, PSC??? To: Sent: Tuesday, March 3, 2009 11:42:09 PMSubject: Re: Laproscopic Proctocolectomy/ Ileal anal anastomosis/ loop ileostomy Dear Holly;This must be a tough decision. The only reinforcement I can give you is that studies in England suggest that the recurrence rate of PSC after transplant is lower in those who have had a colectomy:____________ _________Liver Transpl. 15: 330-340 (2009)A re-evaluation of the risk factors for the recurrence of primary sclerosing cholangitis in liver allografts.Alabraba E, Nightingale P, Gunson B, Hubscher S, Olliff S, Mirza D, Neuberger JLiver Unit, University Hospital Birmingham NHS Foundation Trust, Birmingham, United Kingdom.Previously, we have found that the absence of the colon after liver transplantation (LT) protects the patient from recurrent primary sclerosing cholangitis (rPSC). As our previous observation has not been confirmed in other series, we have reviewed our cohort of patients grafted for primary sclerosing cholangitis (PSC) with greater numbers and longer follow-up to reassess the rate, consequences, and risk factors for rPSC. We collected data on patients who underwent LT for PSC between January 1986 and April 2006. Data were collected for cytomegalovirus status, inflammatory bowel disease status, time of colectomy, type of colectomy, donor-recipient gender mismatch, recipient sex, extended donor criteria (EDC), and donor risk index. Accepted criteria were used to diagnose rPSC. Of a total of 230 consecutive adult patients, 61 (27%) underwent colectomy pre-/peri-LT, and 54 (23.5%) developed rPSC at a median of 4.6 (range, 0.5-12.9) years post-LT. A total of 263 deceased donor grafts were used, and 73 were EDC grafts. A diagnosis of rPSC was made in 61 of the 263 grafts (23%). The recurrence-free patient survival was significantly better (P < 0.05) in patients who underwent pre-/peri-LT colectomy and in those with non-EDC grafts. In conclusion, in this larger cohort of 230 patients and with longer follow-up of 82.5 (range, 0.0-238.6) months [in comparison with the previous report of 152 recipients with a follow-up of 52.8 (range, 1-146) months], we have shown that colectomy remains a significant risk factor for rPSC and that colectomy before and during initial LT for PSC confers a protective effect against rPSC in subsequent graft(s). Moreover, we have shown that EDC grafts are also a significant risk factor for rPSC. PMID: 19243003.____________ _________ _and there is some evidence to suggest that ulcerative colitis can have a more aggressive course after liver transplantation:____________ _________ _____Gut 43: 639-644 (1998)Ulcerative colitis has an aggressive course after orthotopic liver transplantation for primary sclerosing cholangitis.Papatheodoridis GV, Hamilton M, Mistry PK, son B, Rolles K, Burroughs AKLiver Transplantation and Hepatobiliary Medicine, Royal Free Hospital, London, UK.BACKGROUND: The course of inflammatory bowel disease after liver transplantation has been reported as variable with usually no change or improvement, but there may be an increased risk of early colorectal neoplasms. In many centres steroids are often withdrawn early after transplantation and this may affect inflammatory bowel disease activity. AIMS: To evaluate the course of inflammatory bowel disease in primary sclerosing cholangitis transplant patients who were treated without long term steroids. METHODS: Between 1989 and 1996, there were 30 patients transplanted for primary sclerosing cholangitis who survived more than 12 months. Ulcerative colitis was diagnosed in 18 (60%) patients before transplantation; two had previous colectomy. All patients underwent colonoscopy before and after transplantation and were followed for 38 (12-92) months. All received cyclosporin or tacrolimus with or without azathioprine as maintenance immunosuppression. RESULTS: Ulcerative colitis course after transplantation compared with that up to five years before transplantation was the same in eight (50%) and worse in eight (50%) patients. It remained quiescent in eight and worsened in four of the 12 patients with pretransplant quiescent course, whereas it worsened in all four patients with pretransplant active course (p=0.08). New onset ulcerative colitis developed in three (25%) of the 12 patients without inflammatory bowel disease before transplantation. No colorectal cancer has been diagnosed to date. CONCLUSIONS: Preexisting ulcerative colitis often has an aggressive course, while de novo ulcerative colitis may develop in patients transplanted for primary sclerosing cholangitis and treated without long term steroids.PMID: 9824344.____________ _________ _____I'm guessing that this is what your doctor meant about the colitis "blowing up" after liver transplantation.Best regards,Dave (father of (23); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 I assume that this confirms that cholangitis plays a significant role in causing PSC if removing a colon helps prevent problems with the liver, PSC??? To: Sent: Tuesday, March 3, 2009 11:42:09 PMSubject: Re: Laproscopic Proctocolectomy/ Ileal anal anastomosis/ loop ileostomy Dear Holly;This must be a tough decision. The only reinforcement I can give you is that studies in England suggest that the recurrence rate of PSC after transplant is lower in those who have had a colectomy:____________ _________Liver Transpl. 15: 330-340 (2009)A re-evaluation of the risk factors for the recurrence of primary sclerosing cholangitis in liver allografts.Alabraba E, Nightingale P, Gunson B, Hubscher S, Olliff S, Mirza D, Neuberger JLiver Unit, University Hospital Birmingham NHS Foundation Trust, Birmingham, United Kingdom.Previously, we have found that the absence of the colon after liver transplantation (LT) protects the patient from recurrent primary sclerosing cholangitis (rPSC). As our previous observation has not been confirmed in other series, we have reviewed our cohort of patients grafted for primary sclerosing cholangitis (PSC) with greater numbers and longer follow-up to reassess the rate, consequences, and risk factors for rPSC. We collected data on patients who underwent LT for PSC between January 1986 and April 2006. Data were collected for cytomegalovirus status, inflammatory bowel disease status, time of colectomy, type of colectomy, donor-recipient gender mismatch, recipient sex, extended donor criteria (EDC), and donor risk index. Accepted criteria were used to diagnose rPSC. Of a total of 230 consecutive adult patients, 61 (27%) underwent colectomy pre-/peri-LT, and 54 (23.5%) developed rPSC at a median of 4.6 (range, 0.5-12.9) years post-LT. A total of 263 deceased donor grafts were used, and 73 were EDC grafts. A diagnosis of rPSC was made in 61 of the 263 grafts (23%). The recurrence-free patient survival was significantly better (P < 0.05) in patients who underwent pre-/peri-LT colectomy and in those with non-EDC grafts. In conclusion, in this larger cohort of 230 patients and with longer follow-up of 82.5 (range, 0.0-238.6) months [in comparison with the previous report of 152 recipients with a follow-up of 52.8 (range, 1-146) months], we have shown that colectomy remains a significant risk factor for rPSC and that colectomy before and during initial LT for PSC confers a protective effect against rPSC in subsequent graft(s). Moreover, we have shown that EDC grafts are also a significant risk factor for rPSC. PMID: 19243003.____________ _________ _and there is some evidence to suggest that ulcerative colitis can have a more aggressive course after liver transplantation:____________ _________ _____Gut 43: 639-644 (1998)Ulcerative colitis has an aggressive course after orthotopic liver transplantation for primary sclerosing cholangitis.Papatheodoridis GV, Hamilton M, Mistry PK, son B, Rolles K, Burroughs AKLiver Transplantation and Hepatobiliary Medicine, Royal Free Hospital, London, UK.BACKGROUND: The course of inflammatory bowel disease after liver transplantation has been reported as variable with usually no change or improvement, but there may be an increased risk of early colorectal neoplasms. In many centres steroids are often withdrawn early after transplantation and this may affect inflammatory bowel disease activity. AIMS: To evaluate the course of inflammatory bowel disease in primary sclerosing cholangitis transplant patients who were treated without long term steroids. METHODS: Between 1989 and 1996, there were 30 patients transplanted for primary sclerosing cholangitis who survived more than 12 months. Ulcerative colitis was diagnosed in 18 (60%) patients before transplantation; two had previous colectomy. All patients underwent colonoscopy before and after transplantation and were followed for 38 (12-92) months. All received cyclosporin or tacrolimus with or without azathioprine as maintenance immunosuppression. RESULTS: Ulcerative colitis course after transplantation compared with that up to five years before transplantation was the same in eight (50%) and worse in eight (50%) patients. It remained quiescent in eight and worsened in four of the 12 patients with pretransplant quiescent course, whereas it worsened in all four patients with pretransplant active course (p=0.08). New onset ulcerative colitis developed in three (25%) of the 12 patients without inflammatory bowel disease before transplantation. No colorectal cancer has been diagnosed to date. CONCLUSIONS: Preexisting ulcerative colitis often has an aggressive course, while de novo ulcerative colitis may develop in patients transplanted for primary sclerosing cholangitis and treated without long term steroids.PMID: 9824344.____________ _________ _____I'm guessing that this is what your doctor meant about the colitis "blowing up" after liver transplantation.Best regards,Dave (father of (23); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 There is an awful lot to think about in todays posts regarding recurring PSC and Urso. We are all different as we always say. I'm 8 years out now with so far no sign of recurrent PSC. My UC has been controlled for 30+ years, and is actually nonexistent in recent years. I'm conducting my own little experiment with Urso. I stopped it 1 1/2 months ago after reducing for a while. I had labs this am, and I will report the results. As always I'm extremely grateful to Dave for "watching over" us. Any advice is always welcome, from Dave and anybody else. Don Please be a blood/organ donor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 Hi Holly, I had surgey back in 95. For me it was the best thing i did dealing with uc. I have a j pouch and maybe about four times a year I get pouchitis. I felt great after the surgey. I wish I would've had it down years earlier. I hope you have the same luck I did with the surgey and recovery. Take care CASEY UC 90, Jpouch 95, PSC 06 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.