Guest guest Posted September 20, 2008 Report Share Posted September 20, 2008 Hi ee, We are glad you found us, but we say to everyone new we are sorry you have to be here.You have come to the right place for great information, wonderful people, and the greatest conference that we have each year. This year it will be in Chicago, in May. I don't know where you are but they are very worth travelling to. You sound like you have a great attitude and that counts so much with every disease. You are right, this is something that you may die with instead of. I believe we are coming close to a time when they have this cured rather than a liver transplant. If you have any questions please feel free to ask, there are many very knowledgeable people here. The weekends are usually slow, but every question gets an answer. Take care, Bettyann (SC) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2008 Report Share Posted September 20, 2008 Hi ee, I am relatively new to this site and am so grateful for the site because this is the first palce that I have felt supported and when I think of something in the middle of the night I can throughout an question and some one will point me in the right direction. Welcome Dawn > > Hi everyone. I am ee, 39 years old, married with 4 kids. I have > been diagnosed with CD since 1999, bowel resection in 2001, remission > since. Lately I felt symptomatic, and made an appt with the doc for > last Thursday. The 4 days prior to the appt I was sick with fever and > aches, and assumed it was CD related. I felt so sick the morning of > the appt I decided to go to the ER instead. This turned out to be a > very good decision. My liver enzymes were abnormal, and I actually > still don't know what they were. Instead of seeing the doc I had an > appt. with, his associate happened to be in the hospital and is one of > the top rated GIs in this area, and specializes in liver disease. > Lucky me! He named a few things this could be, including PSC which was > the one thing I was praying it was not, and scheduled a colonoscopy > and ERCP for Tuesday. The scope showed no signs of active CD (yay!) > but did confirm PSC. > The last few days have been a roller coaster. In just a few days I > have gone from " oh my God I am going to die young of liver disease! " > to " ok, I have chronic liver disease that I am just as likely to die > with as I am to die from " . I am in that adjustment phase, learning, > gathering the facts, and dealing with the huge change my life will > have. My first lesson- search engines are BAD. I ordered a good book > with appropriate resources and am looking here and there. Right now, I > am on URSO, and will be re-ERCPd in a year or two. I see the doc next > month for a follow up, and it will be the first time I will talk to > him with a clear head, I was sick or drugged before. I want to ask him > about the possibility of stents. Anyone have these? From what I have > read so far, I am reasonably optimistic about the effects of URSO. I > have found just one or two sites that calm me or otherwise say much > positive at all, so I am hoping for some good, yet honest, > encouragement and support here. I am scared, but not terrified. I am > not the type to sit around and wait to get sick, I intend to carry on > with my wonderful life, with a few adjustments of course. I am > following a low fat diet, I am obese and have already started to lose > weight. This is also due to the URSO I'm sure, aside from making me > nervous, it kills my appetite, and I am sure that will all subside right? > Anyway, I am really glad there is a place to come and talk. I look > forward to learning from everyone. > > ee > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2008 Report Share Posted September 20, 2008 An additional note - If no one answers your question or responds to your post... likely it is because alot of other things are going on. Don't be shy - ask again and truly someone will respond. Plus another wonderful thing about this group is that there are folks from around the world - so it's rare that someone is not awake! Take care. Joanne H (, Ca., mom of , 18, UC/PSC 2-06; JRA 98; Osteopenia, but loving the Calcium Adora supplements - good dark chocolate!) Hi ee, .... The weekends are usually slow, but every question gets an answer. Take care, Bettyann (SC) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2008 Report Share Posted September 20, 2008 Hi ee, I have some experience with stenting. I've had 3 so far in the same place, for a dominant stricture that is stubborn and keeps closing off the duct work on my right side. My experience with stenting has been very positive thus far: I feel SO much better and have a terrific QOL when I am stented, vs. un-stented. My last ERCP was 10 days ago, and m y docs decided to go for a trial without the stent this time, and I was not re-stented. We'll see how it goes, hopefully my stricture will stay open this time around. As for the Urso being an appetite suppressant, I found that never went away for me until I lowered my Urso dosage. What mg/kg dosage are you on, high/med/or low? I find that I feel best when I stay in the med/low dosage range (with my hep's approval). When I get up to about 20 mg/kg and above I start to lose my appetite and get nauseous when I eat, then start to lose weight like crazy because of that. Then because I'm not eating I have no energy.... It's a bad cycle. Like the others have said, welcome--but so sorry you're here in the first place. Genevieve UC 1983, J-Pouch 1999, PSC 12/07 I want to ask him > about the possibility of stents. Anyone have these? have already started to lose > weight. This is also due to the URSO I'm sure, aside from making me > nervous, it kills my appetite, and I am sure that will all subside right? > > ee > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2008 Report Share Posted September 21, 2008 > > > As for the Urso being an appetite suppressant, I found that never went > away for me until I lowered my Urso dosage. What mg/kg dosage are you > on, high/med/or low? I find that I feel best when I stay in the > med/low dosage range (with my hep's approval). When I get up to about > 20 mg/kg and above I start to lose my appetite and get nauseous when I > eat, then start to lose weight like crazy because of that. Then > because I'm not eating I have no energy.... It's a bad cycle. > > Like the others have said, welcome--but so sorry you're here in the > first place. > > Genevieve > UC 1983, J-Pouch 1999, PSC 12/07 > > > > > > > > Thanks Genevieve! Right now I am taking 250 mg. Should I ask about mg/kg dosing? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2008 Report Share Posted September 21, 2008 > > > As for the Urso being an appetite suppressant, I found that never went > away for me until I lowered my Urso dosage. What mg/kg dosage are you > on, high/med/or low? I find that I feel best when I stay in the > med/low dosage range (with my hep's approval). When I get up to about > 20 mg/kg and above I start to lose my appetite and get nauseous when I > eat, then start to lose weight like crazy because of that. Then > because I'm not eating I have no energy.... It's a bad cycle. > > Like the others have said, welcome--but so sorry you're here in the > first place. > > Genevieve > UC 1983, J-Pouch 1999, PSC 12/07 > > > > > > > > Thanks Genevieve! Right now I am taking 250 mg. Should I ask about mg/kg dosing? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2008 Report Share Posted September 21, 2008 > > > As for the Urso being an appetite suppressant, I found that never went > away for me until I lowered my Urso dosage. What mg/kg dosage are you > on, high/med/or low? I find that I feel best when I stay in the > med/low dosage range (with my hep's approval). When I get up to about > 20 mg/kg and above I start to lose my appetite and get nauseous when I > eat, then start to lose weight like crazy because of that. Then > because I'm not eating I have no energy.... It's a bad cycle. > > Like the others have said, welcome--but so sorry you're here in the > first place. > > Genevieve > UC 1983, J-Pouch 1999, PSC 12/07 > > > > > > > > Thanks Genevieve! Right now I am taking 250 mg. Should I ask about mg/kg dosing? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 Hi again ee, mg/kg is the way that doctors calculate the dosage of most any medications you might take; honestly, I don't know how important it is other than for the actual calculation of the dosages, and to just distinguish how 'big' the dose is that you're on. I just know that when I start reaching the upper range of the moderate dosage I start to really feel side effects from the Urso. Now you said you're only on 250 mg of Urso.... That's a low dose by just about any adult's standards. If you're on that low of a dose already and it's affecting you, you might want to talk to your doc about it if the SE's get unbearable. Genevieve UC 1983, J-Pouch 1999, PSC 12/07 > > > > > > > > Thanks Genevieve! Right now I am taking 250 mg. Should I ask about > mg/kg dosing? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 > > > > Now you said you're only on 250 mg of Urso.... That's a low dose by > just about any adult's standards. If you're on that low of a dose > already and it's affecting you, you might want to talk to your doc > about it if the SE's get unbearable. > > Genevieve > UC 1983, J-Pouch 1999, PSC 12/07 > > Oh thanks again! I should have said, I am on 250mg, twice a day, but by my calcs that is still very low in comparison to a lot of what I am reading. I will certainly bring it up to him, thanks again! Quote Link to comment Share on other sites More sharing options...
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