Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 URSO has improved wellbeing for Robbie and he is almost the Robbie of old with his sense of humour back ... We were told URSO may increase his nauseous feeling, but surprisingly it seems to have helped with him not too nauseous any more. More surprisingly, suddenly Robbie is hungry all the time(after months of having no appetite) and is eating 'everything in sight and out of sight' but even more surprisingly, not gaining an ounce of weight (Wish it were me !). Worried about this because Robbie was always well-built and athletic but has now lost almost 30 kgs.He now looks 'SICK'really hollow cheek bones etc and quite jaundiced too .This irks Robbie because everyone he meets seems to comment on it (including casual acquaintances)and Robbie hates discussing PSC/UC ...so much so that he has started avoiding going out. We were to go 'HOME' (NZ) for Christmas and Robbie cancelled it because he thought everyone from the paper delivery guy to the dairy owner would ask if he was sick.. Anyone with this problem ? Do you gain the weight back on with PSC ? Why is he not putting any on inspite of eating really well ? Wish everyone in this group a great year. Thanks for the good wishes. Wish you and family a very happy and prosperous new year. how do they monitor for cholangiocarcinoma back home? Here the top hepatologist is not even happy checking CEA CA19 9 levels. He says too many false +s and too many false -s for it to be monitored. This worries me and gives me nightmares. IF this ever happens shouldn't we be catching it in early stages ? How can we if we do not even check anything ? Leah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 When I had my last cholangitis attack, I dropped weight very quickly and went from 175 lbs to 154 lbs in less than a month. Although it took a couple of months, I eventually gained the weight back. I was off work about 3 months and rarely went out because of the noticeable talking my appearance generated. Hopefully this will pass for him as well. Best wishes Phil PSC 93 --- prichsy wrote: > URSO has improved wellbeing for Robbie and he is > almost the Robbie of > old with his sense of humour back ... > We were told URSO may increase his nauseous feeling, > but surprisingly > it seems to have helped with him not too nauseous > any more. More > surprisingly, suddenly Robbie is hungry all the > time(after months of > having no appetite) and is eating 'everything in > sight and out of > sight' but even more surprisingly, not gaining an > ounce of weight > (Wish it were me !). > Worried about this because Robbie was always > well-built and athletic > but has now lost almost 30 kgs.He now looks > 'SICK'really hollow cheek > bones etc and quite jaundiced too .This irks Robbie > because everyone he > meets seems to comment on > it (including casual acquaintances)and Robbie hates > discussing > PSC/UC ...so much so that he has started avoiding > going out. > We were to go 'HOME' (NZ) for Christmas and Robbie > cancelled it because > he thought everyone from the paper delivery guy to > the dairy owner > would ask if he was sick.. > Anyone with this problem ? Do you gain the weight > back on with PSC ? > Why is he not putting any on inspite of eating > really well ? > > Wish everyone in this group a great year. > > > Thanks for the good wishes. Wish you and > family a very happy > and prosperous new year. how do they monitor > for > cholangiocarcinoma back home? > Here the top hepatologist is not even happy checking > CEA CA19 9 levels. > He says too many false +s and too many false -s for > it to be monitored. > This worries me and gives me nightmares. IF this > ever happens > shouldn't we be catching it in early stages ? How > can we if we do not > even check anything ? > > > Leah > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 Leah, I had weight loss prior to both transplants. Bile is used to break down fat in the digestive system. If the amount of bile is reduced, fat can be passed through rather then absorbed. Even though your son is eating more, less fat is being absorbed by the body causing the body to use it's stores of fat. I could eat anything I wanted and never gained weight. After both transplants I gained significant weight. I hope this helps. PSC 89, TX1 97, TX2 2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 Although I have been in the 170 to 180 lb range most of my adult life, post-transplant I was down to 150. It may not set any records, but it is thin for 6'2 " . With exercise and eating I regained about 20 lbs before PSC recurred and I started losing weight. Even though I have a good appetite my weight is just under 160. I (and my docs) would like to see me gain 5 lbs or so, it just doesn't come easily. Especially bothersome is that I seem to loose muscle mass and add abdominal fat. But when the liver isn't functioning well, proteins needed by the body get scavanged from less used muscles and I think that is happening to some extent with me. Tim R, ltx 1998, recurrent PSC 2002 > Robbie ... has now lost almost 30 kgs. ... > Anyone with this problem ? Do you gain the weight back on with PSC ? > Why is he not putting any on inspite of eating really well ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 > Further, because no doc is willing to monitor CEA or CA19-9 levels, Hi Leah I had the same response from my doctor when I asked about cancer risks, he said the main thing is to monitor the LFTs. I got quite down about it, but decided that the only time I would worry about it was the time between when the blood was drawn and when I got the results. So everytime the thoughts of the big C wander into by mind, I firmly squash it and go and do something nice - takes a bit of work though! I had a grin at the New Zealand connection > he thought everyone from the paper delivery guy to the dairy owner > would ask if he was sick.. The joys of living in a place where everyone knows your name!!. Hopefully Robbie will get PSC under control, put weight on and you will have a New Zealand Christmas this year. Leah you are doing so well, I am amazed how well you are coping with living in a different country with your little ones and coming to grips with and be so proactive about PSC Best wishes Quote Link to comment Share on other sites More sharing options...
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