Guest guest Posted October 7, 2007 Report Share Posted October 7, 2007 Hi all, I just had a hepatologist tell me that people with PSC have an 80% chance of losing the j-pouch, so the j-pouch isn't recommended if you have PSC. This was a shock to say the least. Has anyone here lost their j-pouch? The alternative of an ileostomy seems pretty grim to me. I have heard that with persistent pouchitis, you can lose the j-pouch. -Marie _________________________________________________________________ i'm making a difference. Make every IM count for the cause of your choice. Join Now. http://im.live.com/messenger/im/home/?source=TAGHM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2007 Report Share Posted October 7, 2007 Marie, I had a dx of PSC when they found dysplasia in my colon after 16 years of UC. I went to the Cleveland Clinic for evaluation and possible removal of my colon. It was at Cleveland Clinic that Dr. Fazio told me that J pouch WAS the way to go with a dx of PSC. I had my Jpouch surgery December 1999 with take down 3-2000. Up until 1 month ago....I had never had any problems with my pouch. Now, I seem to have an extreme urgency problem that stops me dead in my tracks until the urge subsides...otherwise I leak. I am thinking that something in my diet or my meds is causing it, so I am going the route of elimination of items to see what happens. I had been a huge succes with jpouch because only after 6 weeks with it, I was down to 3 trips in a 24 hour period. I would definitely get second opinions on having the jpouch removed. Cipro can help with pouchitis. Don't just take one doctors viewpoint. The 3 months with my ileostomy were the worst 3 months of my life. I didn't like any part of it. I know there are some who have no problems, and my problem could be the ileostomy was up high in preparation of the jpouch, which may have caused much more caustic products leading to alot of problems. Cindy Baudoux-Northrup ________________________________________________________________________________\ ____ Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news, photos & more. http://mobile.yahoo.com/go?refer=1GNXIC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2007 Report Share Posted October 7, 2007 Hi, My husband would love to lose his J-pouch as it has never worked right for him. He received it in 2002. Doctor Remzi and Dr. Zein at Cleveland Clinic told him that with PSC the pouch is going to have problems, ie. persistent pouchitis. He was on Cipro...didn't work, he is now on Xifaxin which might be working but the day he stops taking an antibiotic is the day his pouchitis really flares up along with cholangitis attacks. He had three ostomies while constructing his J-pouch since the first surgeon screwed it up. Dr. Remzi at Cleveland Clinic fixed the pouch so at least surgery was successful but his quality of life was much better with the ostomy than the pouch. They won't reverse the pouch since he is on the transplant list because they try to avoid all surgeries if possible prior to transplant. He has had persistent pouchitis for 5 years and never a mention of losing it. Kathy > > > > > > Hi all, > > I just had a hepatologist tell me that people with PSC have an 80% chance of > losing the j-pouch, so the j-pouch isn't recommended if you have PSC. This > was a shock to say the least. Has anyone here lost their j-pouch? The > alternative of an ileostomy seems pretty grim to me. I have heard that with > persistent pouchitis, you can lose the j-pouch. > > -Marie > > _________________________________________________________________ > i'm making a difference. Make every IM count for the cause of your choice. > Join Now. http://im.live.com/messenger/im/home/?source=TAGHM > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2007 Report Share Posted October 7, 2007 Cindy, I have a feeling the source of this info wasn't so good. I don't recall hearing that people with PSC tend to lose the j-pouch. Mine is doing okay. I'm on flagyl for the pouchitis, and probiotics. I should probably be on more flagyl (I'm only taking 250 mg twice per day. The normal dose is 500 mg at least twice a day. I had the ileostomy for 3 months as well, and it was the pits. So I plan to keep the j-pouch. -Marie > >Reply-To: >To: >Subject: Re: PSC & losing the j-pouch >Date: Sun, 7 Oct 2007 14:50:40 -0700 (PDT) > > >Marie, I had a dx of PSC when they found dysplasia in >my colon after 16 years of UC. I went to the >Cleveland Clinic for evaluation and possible removal >of my colon. > >It was at Cleveland Clinic that Dr. Fazio told me that >J pouch WAS the way to go with a dx of PSC. > >I had my Jpouch surgery December 1999 with take down >3-2000. Up until 1 month ago....I had never had any >problems with my pouch. Now, I seem to have an >extreme urgency problem that stops me dead in my >tracks until the urge subsides...otherwise I leak. I >am thinking that something in my diet or my meds is >causing it, so I am going the route of elimination of >items to see what happens. > >I had been a huge succes with jpouch because only >after 6 weeks with it, I was down to 3 trips in a 24 >hour period. > >I would definitely get second opinions on having the >jpouch removed. Cipro can help with pouchitis. Don't >just take one doctors viewpoint. The 3 months with my >ileostomy were the worst 3 months of my life. I >didn't like any part of it. I know there are some who >have no problems, and my problem could be the >ileostomy was up high in preparation of the jpouch, >which may have caused much more caustic products >leading to alot of problems. > > > >Cindy Baudoux-Northrup > > > >_______________________________________________________________________________\ _____ >Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, >news, photos & more. >http://mobile.yahoo.com/go?refer=1GNXIC _________________________________________________________________ i'm making a difference. Make every IM count for the cause of your choice. Join Now. http://im.live.com/messenger/im/home/?source=TAGHM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2007 Report Share Posted October 7, 2007 's pouch is doing fine. Some days he " goes " more than others, but a lot of it is what he eats. We found that older doctors tend to shy away from the J pouch. His GI wanted him to have an ostomy, but the general surgeon he sent us to, really felt that at 's age (27 at the time) he should at least try to have the j pouch done, so he himself researched and found the best colorectal surgeon in our area. We have great respect for the general surgeon for turning down a surgery in order to do what was best for . The three months between surgeries was awful for . He was so depressed with the ostomy and is greatful for his j pouch. We were told that he would have more frequent bathroom visits due to the liver disease. Something about the bile. Thankfully, things appear to be much better since transplant. In his case, he was using Lomotil and Imodium plus another drug to try to reduce the bathroom visits. Since transplant, only Lomotil. He was also using a full tube of Calmoseptine (ointment) a week and now he uses about a tube every couple of months. I totally think the new liver helped. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2007 Report Share Posted October 8, 2007 I have had my J Pouch for 11 years and PSC for 10. Marsha See what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2007 Report Share Posted October 8, 2007 Kathy, I take Flagyl on off for pouchitis. MarshaSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2007 Report Share Posted October 8, 2007 Thank you for telling 's story and your impressions of older GIs. I think the info the hepatologist got on 80% of PSCers losing the J-pouch is incorrect. -Marie > >Reply-To: >To: >Subject: Re: PSC & losing the j-pouch >Date: Mon, 08 Oct 2007 02:43:51 -0000 > >'s pouch is doing fine. Some days he " goes " more than others, but >a lot of it is what he eats. We found that older doctors tend to shy >away from the J pouch. His GI wanted him to have an ostomy, but the >general surgeon he sent us to, really felt that at 's age (27 at >the time) he should at least try to have the j pouch done, so he >himself researched and found the best colorectal surgeon in our area. >We have great respect for the general surgeon for turning down a >surgery in order to do what was best for . The three months >between surgeries was awful for . He was so depressed with the >ostomy and is greatful for his j pouch. We were told that he would >have more frequent bathroom visits due to the liver disease. Something >about the bile. Thankfully, things appear to be much better since >transplant. In his case, he was using Lomotil and Imodium plus another >drug to try to reduce the bathroom visits. Since transplant, only >Lomotil. He was also using a full tube of Calmoseptine (ointment) a >week and now he uses about a tube every couple of months. I totally >think the new liver helped. > > > _________________________________________________________________ Peek-a-boo FREE Tricks & Treats for You! http://www.reallivemoms.com?ocid=TXT_TAGHM & loc=us Quote Link to comment Share on other sites More sharing options...
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