Guest guest Posted July 28, 2008 Report Share Posted July 28, 2008 , I think that liver disease in general makes it difficult for some affected to maintain their weight, including myself. I've struggled to maintain my weight almost my entire adult life....5'10" and 125 lbs. here. I eat very well when I'm able. However, I can (and have) shed another 10-15 pounds in less than 2 weeks when really ill. Sometimes it's very hard to look in the mirror. Part of the problem may be that I don't have a gallbladder, but I think it's mostly just liver damage. I do not metabolize fat well...I know, I know, most people would LOVE to have that problem! LOL I am also deficient in vitamins A and D (and probably E and K as well, though I wasn't tested for those) and recently diagnosed with osteopenia...generally poor absorption and utilization is just an unfortunate consequence of liver disease. And for some PSC'ers there's the whole added burden of IBD, which must complicate the scenario even more. However, when I attended the PSC conference this year, by no means was everyone skinny like me! As a matter of fact, I would say I was in the minority. So, I guess it's different for everyone? Jeff in FL PSC 1989 Anyhow, my post is getting rather long so I'll cut to the chase: Istill only weigh 125 pounds and I have serious difficulty trying tojust maintain my body weight. Obviously we cannot eat lots of fat socertain foods are off limits, do you all have this problem? I reallylook like the living dead and it really gets me down.Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2008 Report Share Posted July 28, 2008 , I think that liver disease in general makes it difficult for some affected to maintain their weight, including myself. I've struggled to maintain my weight almost my entire adult life....5'10" and 125 lbs. here. I eat very well when I'm able. However, I can (and have) shed another 10-15 pounds in less than 2 weeks when really ill. Sometimes it's very hard to look in the mirror. Part of the problem may be that I don't have a gallbladder, but I think it's mostly just liver damage. I do not metabolize fat well...I know, I know, most people would LOVE to have that problem! LOL I am also deficient in vitamins A and D (and probably E and K as well, though I wasn't tested for those) and recently diagnosed with osteopenia...generally poor absorption and utilization is just an unfortunate consequence of liver disease. And for some PSC'ers there's the whole added burden of IBD, which must complicate the scenario even more. However, when I attended the PSC conference this year, by no means was everyone skinny like me! As a matter of fact, I would say I was in the minority. So, I guess it's different for everyone? Jeff in FL PSC 1989 Anyhow, my post is getting rather long so I'll cut to the chase: Istill only weigh 125 pounds and I have serious difficulty trying tojust maintain my body weight. Obviously we cannot eat lots of fat socertain foods are off limits, do you all have this problem? I reallylook like the living dead and it really gets me down.Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2008 Report Share Posted July 28, 2008 , I think that liver disease in general makes it difficult for some affected to maintain their weight, including myself. I've struggled to maintain my weight almost my entire adult life....5'10" and 125 lbs. here. I eat very well when I'm able. However, I can (and have) shed another 10-15 pounds in less than 2 weeks when really ill. Sometimes it's very hard to look in the mirror. Part of the problem may be that I don't have a gallbladder, but I think it's mostly just liver damage. I do not metabolize fat well...I know, I know, most people would LOVE to have that problem! LOL I am also deficient in vitamins A and D (and probably E and K as well, though I wasn't tested for those) and recently diagnosed with osteopenia...generally poor absorption and utilization is just an unfortunate consequence of liver disease. And for some PSC'ers there's the whole added burden of IBD, which must complicate the scenario even more. However, when I attended the PSC conference this year, by no means was everyone skinny like me! As a matter of fact, I would say I was in the minority. So, I guess it's different for everyone? Jeff in FL PSC 1989 Anyhow, my post is getting rather long so I'll cut to the chase: Istill only weigh 125 pounds and I have serious difficulty trying tojust maintain my body weight. Obviously we cannot eat lots of fat socertain foods are off limits, do you all have this problem? I reallylook like the living dead and it really gets me down.Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2008 Report Share Posted July 28, 2008 Hi Jeff and ,I suffer from lack of appetite to nausea to occasional vomiting. So I take compazine, which helps tremendously. Now I'm also taking lots of prednisone (for the autoimmune hepatitis), so that really changes everything!!! I'm lucky I'm not as big as a house.Marie To: From: Jeffsullivan@...Date: Mon, 28 Jul 2008 22:59:43 -0400Subject: Re: Body weight question. , I think that liver disease in general makes it difficult for some affected to maintain their weight, including myself. I've struggled to maintain my weight almost my entire adult life....5'10" and 125 lbs. here. I eat very well when I'm able. However, I can (and have) shed another 10-15 pounds in less than 2 weeks when really ill. Sometimes it's very hard to look in the mirror. Part of the problem may be that I don't have a gallbladder, but I think it's mostly just liver damage. I do not metabolize fat well...I know, I know, most people would LOVE to have that problem! LOL I am also deficient in vitamins A and D (and probably E and K as well, though I wasn't tested for those) and recently diagnosed with osteopenia...generally poor absorption and utilization is just an unfortunate consequence of liver disease. And for some PSC'ers there's the whole added burden of IBD, which must complicate the scenario even more. However, when I attended the PSC conference this year, by no means was everyone skinny like me! As a matter of fact, I would say I was in the minority. So, I guess it's different for everyone? Jeff in FL PSC 1989 In a message dated 7/28/2008 9:03:11 P.M. Eastern Daylight Time, leonard667 (AT) btinternet (DOT) com writes: Anyhow, my post is getting rather long so I'll cut to the chase: Istill only weigh 125 pounds and I have serious difficulty trying tojust maintain my body weight. Obviously we cannot eat lots of fat socertain foods are off limits, do you all have this problem? I reallylook like the living dead and it really gets me down.Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. Stay in touch when you're away with Windows Live Messenger. IM anytime you're online. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2008 Report Share Posted July 28, 2008 Hi Jeff and ,I suffer from lack of appetite to nausea to occasional vomiting. So I take compazine, which helps tremendously. Now I'm also taking lots of prednisone (for the autoimmune hepatitis), so that really changes everything!!! I'm lucky I'm not as big as a house.Marie To: From: Jeffsullivan@...Date: Mon, 28 Jul 2008 22:59:43 -0400Subject: Re: Body weight question. , I think that liver disease in general makes it difficult for some affected to maintain their weight, including myself. I've struggled to maintain my weight almost my entire adult life....5'10" and 125 lbs. here. I eat very well when I'm able. However, I can (and have) shed another 10-15 pounds in less than 2 weeks when really ill. Sometimes it's very hard to look in the mirror. Part of the problem may be that I don't have a gallbladder, but I think it's mostly just liver damage. I do not metabolize fat well...I know, I know, most people would LOVE to have that problem! LOL I am also deficient in vitamins A and D (and probably E and K as well, though I wasn't tested for those) and recently diagnosed with osteopenia...generally poor absorption and utilization is just an unfortunate consequence of liver disease. And for some PSC'ers there's the whole added burden of IBD, which must complicate the scenario even more. However, when I attended the PSC conference this year, by no means was everyone skinny like me! As a matter of fact, I would say I was in the minority. So, I guess it's different for everyone? Jeff in FL PSC 1989 In a message dated 7/28/2008 9:03:11 P.M. Eastern Daylight Time, leonard667 (AT) btinternet (DOT) com writes: Anyhow, my post is getting rather long so I'll cut to the chase: Istill only weigh 125 pounds and I have serious difficulty trying tojust maintain my body weight. Obviously we cannot eat lots of fat socertain foods are off limits, do you all have this problem? I reallylook like the living dead and it really gets me down.Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. Stay in touch when you're away with Windows Live Messenger. IM anytime you're online. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2008 Report Share Posted July 28, 2008 Hi Jeff and ,I suffer from lack of appetite to nausea to occasional vomiting. So I take compazine, which helps tremendously. Now I'm also taking lots of prednisone (for the autoimmune hepatitis), so that really changes everything!!! I'm lucky I'm not as big as a house.Marie To: From: Jeffsullivan@...Date: Mon, 28 Jul 2008 22:59:43 -0400Subject: Re: Body weight question. , I think that liver disease in general makes it difficult for some affected to maintain their weight, including myself. I've struggled to maintain my weight almost my entire adult life....5'10" and 125 lbs. here. I eat very well when I'm able. However, I can (and have) shed another 10-15 pounds in less than 2 weeks when really ill. Sometimes it's very hard to look in the mirror. Part of the problem may be that I don't have a gallbladder, but I think it's mostly just liver damage. I do not metabolize fat well...I know, I know, most people would LOVE to have that problem! LOL I am also deficient in vitamins A and D (and probably E and K as well, though I wasn't tested for those) and recently diagnosed with osteopenia...generally poor absorption and utilization is just an unfortunate consequence of liver disease. And for some PSC'ers there's the whole added burden of IBD, which must complicate the scenario even more. However, when I attended the PSC conference this year, by no means was everyone skinny like me! As a matter of fact, I would say I was in the minority. So, I guess it's different for everyone? Jeff in FL PSC 1989 In a message dated 7/28/2008 9:03:11 P.M. Eastern Daylight Time, leonard667 (AT) btinternet (DOT) com writes: Anyhow, my post is getting rather long so I'll cut to the chase: Istill only weigh 125 pounds and I have serious difficulty trying tojust maintain my body weight. Obviously we cannot eat lots of fat socertain foods are off limits, do you all have this problem? I reallylook like the living dead and it really gets me down.Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. Stay in touch when you're away with Windows Live Messenger. IM anytime you're online. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2008 Report Share Posted July 28, 2008 Jeff - Wow - Your response was so close to my son 's situation - he too is 5'10" and weighs about 125 to 126. He too can drop weight so easily. His vitamin A and D levels are normal, but he too has osteopenia. And food is limited, too much fat causes significant abdominal pain (he takes Nexium daily to keep the abdominal pain, reflux, and when bad, chest pain to a dull roar. You both are not alone! Joanne H (, Ca., mom of , 18, UC/PSC 2-06; Rheum Arthritis 98) , I think that liver disease in general makes it difficult for some affected to maintain their weight, including myself. I've struggled to maintain my weight almost my entire adult life....5'10" and 125 lbs. here. I eat very well when I'm able. However, I can (and have) shed another 10-15 pounds in less than 2 weeks when really ill. .. Jeff in FL PSC 1989 .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2008 Report Share Posted July 28, 2008 Jeff - Wow - Your response was so close to my son 's situation - he too is 5'10" and weighs about 125 to 126. He too can drop weight so easily. His vitamin A and D levels are normal, but he too has osteopenia. And food is limited, too much fat causes significant abdominal pain (he takes Nexium daily to keep the abdominal pain, reflux, and when bad, chest pain to a dull roar. You both are not alone! Joanne H (, Ca., mom of , 18, UC/PSC 2-06; Rheum Arthritis 98) , I think that liver disease in general makes it difficult for some affected to maintain their weight, including myself. I've struggled to maintain my weight almost my entire adult life....5'10" and 125 lbs. here. I eat very well when I'm able. However, I can (and have) shed another 10-15 pounds in less than 2 weeks when really ill. .. Jeff in FL PSC 1989 .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 Hi steven, Well I must be the odd ball in this group cause I actually gained 30 lbs since my diagnosis in 2005 and for me I'm not sure if that is good or bad , but good luck in maintaining your weight. Marisol (PSC 2005) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2008 Report Share Posted August 2, 2008 Hi , I too have had problems gaining weight. But I have gained a few pounds recently. I used to weigh (pre PSC) around 190-195, I was diagnosed in Mar 07 with PSC. Since then my weight stays right around 170-175, oh I am 6'5 " , so I look like a twig. I always figured it was b/c I had to stop drinking and eating some of the foods I enjoyed, mainly deep dish pizza. Which is actually part of the reason, of course the other part is PSC. But, I have found that I can eat certain foods such as pizza, but just the thin crust healthier kind. I also drink 1 Boost a day. That helps me get the vitamins my body needs. Last, I have found that exercise and my faith in GOD have gotten me through all the rough spells I have experienced. I hope this helps some. -Adam > > Hi everyone, > > I was wondering if anyone has trouble maintaining body weight? I > haven't spoken to anyone else with PSC before so I'm not sure if > everyone shares the same problems caused by the illness. > > I was diagnosed about maybe 14-16 months ago but I had been ill for a > couple of years at the very least before that, I always blamed myself > and thought I was ill because I wasn't eating a healthy enough diet > but eventually I had to go to hospital because the symptoms were just > too severe to cope with on a day to day basis. I ended up going to > hospital and being put on a special diet because I only weighed 100 > pounds. > > Anyhow, my post is getting rather long so I'll cut to the chase: I > still only weigh 125 pounds and I have serious difficulty trying to > just maintain my body weight. Obviously we cannot eat lots of fat so > certain foods are off limits, do you all have this problem? I really > look like the living dead and it really gets me down. > > Kind regards, > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2008 Report Share Posted August 2, 2008 Hi , I too have had problems gaining weight. But I have gained a few pounds recently. I used to weigh (pre PSC) around 190-195, I was diagnosed in Mar 07 with PSC. Since then my weight stays right around 170-175, oh I am 6'5 " , so I look like a twig. I always figured it was b/c I had to stop drinking and eating some of the foods I enjoyed, mainly deep dish pizza. Which is actually part of the reason, of course the other part is PSC. But, I have found that I can eat certain foods such as pizza, but just the thin crust healthier kind. I also drink 1 Boost a day. That helps me get the vitamins my body needs. Last, I have found that exercise and my faith in GOD have gotten me through all the rough spells I have experienced. I hope this helps some. -Adam > > Hi everyone, > > I was wondering if anyone has trouble maintaining body weight? I > haven't spoken to anyone else with PSC before so I'm not sure if > everyone shares the same problems caused by the illness. > > I was diagnosed about maybe 14-16 months ago but I had been ill for a > couple of years at the very least before that, I always blamed myself > and thought I was ill because I wasn't eating a healthy enough diet > but eventually I had to go to hospital because the symptoms were just > too severe to cope with on a day to day basis. I ended up going to > hospital and being put on a special diet because I only weighed 100 > pounds. > > Anyhow, my post is getting rather long so I'll cut to the chase: I > still only weigh 125 pounds and I have serious difficulty trying to > just maintain my body weight. Obviously we cannot eat lots of fat so > certain foods are off limits, do you all have this problem? I really > look like the living dead and it really gets me down. > > Kind regards, > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2008 Report Share Posted August 2, 2008 Hi , I too have had problems gaining weight. But I have gained a few pounds recently. I used to weigh (pre PSC) around 190-195, I was diagnosed in Mar 07 with PSC. Since then my weight stays right around 170-175, oh I am 6'5 " , so I look like a twig. I always figured it was b/c I had to stop drinking and eating some of the foods I enjoyed, mainly deep dish pizza. Which is actually part of the reason, of course the other part is PSC. But, I have found that I can eat certain foods such as pizza, but just the thin crust healthier kind. I also drink 1 Boost a day. That helps me get the vitamins my body needs. Last, I have found that exercise and my faith in GOD have gotten me through all the rough spells I have experienced. I hope this helps some. -Adam > > Hi everyone, > > I was wondering if anyone has trouble maintaining body weight? I > haven't spoken to anyone else with PSC before so I'm not sure if > everyone shares the same problems caused by the illness. > > I was diagnosed about maybe 14-16 months ago but I had been ill for a > couple of years at the very least before that, I always blamed myself > and thought I was ill because I wasn't eating a healthy enough diet > but eventually I had to go to hospital because the symptoms were just > too severe to cope with on a day to day basis. I ended up going to > hospital and being put on a special diet because I only weighed 100 > pounds. > > Anyhow, my post is getting rather long so I'll cut to the chase: I > still only weigh 125 pounds and I have serious difficulty trying to > just maintain my body weight. Obviously we cannot eat lots of fat so > certain foods are off limits, do you all have this problem? I really > look like the living dead and it really gets me down. > > Kind regards, > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2008 Report Share Posted August 8, 2008 >I like a couple others gained 15 pounds two months after diagnosis. Maybe it was the medicine, i'm not sure. That was three years ago. I have now started losing weight, maybe because i don't eat as much because i get sooooo tired after eating. > Hi everyone, > > I was wondering if anyone has trouble maintaining body weight? I > haven't spoken to anyone else with PSC before so I'm not sure if > everyone shares the same problems caused by the illness. > > I was diagnosed about maybe 14-16 months ago but I had been ill for a > couple of years at the very least before that, I always blamed myself > and thought I was ill because I wasn't eating a healthy enough diet > but eventually I had to go to hospital because the symptoms were just > too severe to cope with on a day to day basis. I ended up going to > hospital and being put on a special diet because I only weighed 100 > pounds. > > Anyhow, my post is getting rather long so I'll cut to the chase: I > still only weigh 125 pounds and I have serious difficulty trying to > just maintain my body weight. Obviously we cannot eat lots of fat so > certain foods are off limits, do you all have this problem? I really > look like the living dead and it really gets me down. > > Kind regards, > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2008 Report Share Posted August 8, 2008 Hi , I am fairly lucky that I can still eat without too much difficulty. Of course, my recent uptick in RUQ pain is putting a serious crimp in that. One thing that I recently discovered that has helped is unrefined, virgin coconut oil. It is is a medium chain fatty acid, so it is readily absorbed and does not require a lengthy, laborious trip through the gut to be broken down and absorbed. from the research I've done, elite endurance athletes have been using it as " fuel " for years. I use it on toast, veggies, etc. to up my caloric intake. I also eat a lot of eggs. I've been buying organic eggs and hard boiling them, or having them over easy with toast for breakfast. Lots of protein and calorie-dense. Hope that helps, Colleen > I was wondering if anyone has trouble maintaining body weight? I > haven't spoken to anyone else with PSC before so I'm not sure if > everyone shares the same problems caused by the illness. > >. > Quote Link to comment Share on other sites More sharing options...
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