Re: Re: colectomy and psc

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Laurie,

Thank you so much for your reply. I met with the Radiologist yesterday. She didn't say anything about fatigue. I already have it though. She did say that they may hve to clean the stent out if it gets blocked. Has your husband had to that? Did he get enthelopathy after having it done?

Wow, he was brave to be awake and lie still for six hours. They are giving me a general. She said it is easier for her and me. Fine with me, I am a chicken. She did say it wasn't that painful (not like a liver biopsy) but it would be hard to hold myl head in position on my own for that long.

Thanks again for your reply it was very helpful.

Patti

Subject: Re: colectomy and pscTo: Date: Tuesday, June 10, 2008, 5:50 PM

, 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 nowand he eats almost nothing. Although he is listed with UAMS of LittleRock, 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> > Subject: colectomy and psc> To: @ yahoogroups. com> 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>