I was wondering if anyone has experienced adrenaline rushes in the pit of your stomach? I have dealt with this for at least 8 years. It has become progressively worse over time and has reached the point where it wakes me up several times a night. I get up and eat thinking it will help but it does'nt. My doctors have tried anxiety & reflux meds, none have helped. The feeling is like you'd get just before a terrible scare such as a head on collision. I am so exausted from it. Also since being diagnosed with PSC three years ago, I have lost 30 lbs. and even tho I consume 2,000 or more calories a day I can not gain weight, I seem to stay right at 95 to 99 lbs. I am only 5 ft. but have always been very muscular and fit. My muscles are quickly disapearing which leaves me with not much more than bone & lose skin. I am so distraught with this new image that I wont wear shorts or sleeveless shirts. I have also been diagnosed with severe osteoperosis. I refused Reclasp because I heard it can cause serious side effects. Just wanted to know if any of you are experiencing any of these symptoms & what if anything are you doing for them? Thanks for any info on these topics.
I was diagnosed with PBC then doctor said PSC now he is back to PBC but he says no matter which one outcome is the same. I initially went to my doctor back in March 2011 due to sudden weight loss and after many months of bloodwork scans ultrasounds MRI and specialists I was diagnosed in November. Funny thing is my GI says my weight loss has nothing to do with my disease which after reading up on it I feel it is a big factor to the weight loss. I am 5'7 and have lost close to 25 lbs weight that I didnot need to lose. I know exactly how you feel about the shorts and sleeveless tops I hated looking at my legs and arms for the longest time I had just gotten to a point where I was toning up before my diagnosis going to the gym etc but now I find it hard to keep up with the rapid weight loss and loose skin. I have started wearing tank tops again and longer shorts I am a beautiful person inside and outside and if someone doesn't like the way my arms or legs look then they don't have to look at them. I keep active walking my 2 dogs several times a day plan on going back to the gym and eat healthy. The best thing we can do with this disease is stay positive and not let it destroy the life we have ahead of us.
I've never had the adrenaline rush in my stomach. It sounds awful and I'm really sorry you're having to go through this. I do wake up in the middle of the night and have to eat. And it doesn't seem to help much either.
The muscle and bone loss go with a dysfunctioning liver, unfortunately. I still go out and walk everyday. I think it helps me mentally and may help a little bit physically. I don't know. But my hep is a big proponent of exercise. So I get out there and move. Walking is just about the best exercise for me. Other things will give me big muscle aches and knots. I'd like to swim but I know it'd be bad for my skin.
I take a LOT of vitamin D3. At least 4,000 units a day. I'm going to up it to 10,000 this week. I have osteopenia but not osteoporosis. And I think the weight-bearing exercise can help with this. I also take calcium, 1,000 mg a day. I had breast cancer last fall and now have to take Aromasin that depletes the body of estrogen. This only adds to the bone loss problem. Your liver can't produce vitamin D anymore, so that's why it's important to supplement it. I found some at Sam's Club that is 5,000 units per tablet, so that's what I'm getting. They wanted to put me on Boniva or some shit like that, but I'm not going to take it. Unless I start breaking bones. I don't think I will.
Hang in there. Can you go with live donor? My doctor recently told me I can go back to that "program." They do lots of live donor surgeries at univ. of colorado hospital.
I know exactly what your talking about. Before I had my ERCP at the mayo clinic I suffered from every symptom out there. I would get severly itchy, tired all the time, jaundice, I would also get the rushes you had mentioned. I would get them at random times but it seemed like it would happen in the shower the most. They would be so bad that I would almost fall over. At mayo the opened up a dominant strictuer that was 9cm long. One that my previous doctor said did not exsist. Do not be affraid to get second or third opinions it may just save your life or at least the quality of it. As far as your weight loss and it being related to PSC. PSC reduces the amount of bile in your digestive tract which is used to digest fat. So all the fat your taking in is not being obsorbed by your body. If you take a look behnd you after your done your buisness you will prob see a greasy film on top of the water. thats where its all going. the next best food source for your body is its own muscle. Read about how Malnutrition works that might help to expain. I'm not a doctor Im just speaking from experience. over the past year i have had every symptom imaginable from PSC , and in the worst way. Untill i got help from people that knew what they where doing.
you are correct about fat absorption. that is why i asked about diet. something i suggested on another thread was an ox bile supplement which helps people digest and absorb fat when they have problems with having enough of their own bile for this process. this is very common with people who have had their gall bladder removed. also as an aside, vitamin D is a fat soluble vitamin which means it needs to be eaten and absorbed with fat for the body to be able to utilize it.
fat is a very important component of diet. it is no less important when we have problems digesting it.
njzuk said:
I know exactly what your talking about. Before I had my ERCP at the mayo clinic I suffered from every symptom out there. I would get severly itchy, tired all the time, jaundice, I would also get the rushes you had mentioned. I would get them at random times but it seemed like it would happen in the shower the most. They would be so bad that I would almost fall over. At mayo the opened up a dominant strictuer that was 9cm long. One that my previous doctor said did not exsist. Do not be affraid to get second or third opinions it may just save your life or at least the quality of it. As far as your weight loss and it being related to PSC. PSC reduces the amount of bile in your digestive tract which is used to digest fat. So all the fat your taking in is not being obsorbed by your body. If you take a look behnd you after your done your buisness you will prob see a greasy film on top of the water. thats where its all going. the next best food source for your body is its own muscle. Read about how Malnutrition works that might help to expain. I'm not a doctor Im just speaking from experience. over the past year i have had every symptom imaginable from PSC , and in the worst way. Untill i got help from people that knew what they where doing.
i don't have PSC but my dad does. he takes the ox bile before a fatty meal. it is hard to say whether it works or not. he is in remission and doesn't have problems retaining weight. he takes it because of the awareness that fat absorption is important. it has been shown to reduce the amount of fat in stool samples of people who had previous fat absorption issues.
I don't have the adrenaline rush that you have, but I have experienced muscle loss of over 25%. I have also lost 47 pounds in 6 weeks mostly because I do not seem to have an appetite. My daughter calls and makes sure that I am eating even though I don't feel hungry. My doctor said that walking will help the digestive process and it seems to keep the nausea at bay. Sorry I can't help any more but I will keep you in my thoughts and prayers.
I just ordered ox bile 500 mg, 100 capsules, from amazon. $8.64 plus shipping, of course.
bubba29 said:
i don't have PSC but my dad does. he takes the ox bile before a fatty meal. it is hard to say whether it works or not. he is in remission and doesn't have problems retaining weight. he takes it because of the awareness that fat absorption is important. it has been shown to reduce the amount of fat in stool samples of people who had previous fat absorption issues.
I never knew how to describe what I was feeling in my stomach. Adrenaline rush pretty much says it all. It has disrupted my sleep, and I have tried everything you have as well, with no noticable results. Its hard when you wake up in the morning and just don't feel you can do anything, much as your mind wants too. I used to be muscular and fit, but last year after a lot of problems and a few hospital admissions, I had lost all muscle I had, and lost about 25 lbs. I don't wear shorts or sleevless shirts either. I feel upset at times when people I know invite me on a hike, and I know I can't do it. I'm glad to hear you refused the Reclast...I know from my mother's experience it can cause more problems than its worth. My osteoporosis is moderate, although I haven't been back in to see how much it has progressed. I'm without insurance (believe me I've tried, been declined, appealed, but thats not the issue here) so I can't really give you any medically related advice to help, but I wanted you to know I've had the same symptoms, and hate it as well. The only advice I can give is to try and get out to the areas you enjoyed before all this stuff, and take a camera. Sit on a rock or a picnic bench and just take pictures. Its not quite the same, but you can still get out.
i would recommend along with the fatty meals you try to eat your fat soluble vitamins. they important for overall health, especially bone health. also curcumin is absorbed better with fat.
I just ordered ox bile 500 mg, 100 capsules, from amazon. $8.64 plus shipping, of course.
bubba29 said:
i don't have PSC but my dad does. he takes the ox bile before a fatty meal. it is hard to say whether it works or not. he is in remission and doesn't have problems retaining weight. he takes it because of the awareness that fat absorption is important. it has been shown to reduce the amount of fat in stool samples of people who had previous fat absorption issues.
I never knew how to describe what I was feeling in my stomach. Adrenaline rush pretty much says it all. It has disrupted my sleep, and I have tried everything you have as well, with no noticable results. Its hard when you wake up in the morning and just don't feel you can do anything, much as your mind wants too. I used to be muscular and fit, but last year after a lot of problems and a few hospital admissions, I had lost all muscle I had, and lost about 25 lbs. I don't wear shorts or sleevless shirts either. I feel upset at times when people I know invite me on a hike, and I know I can't do it. I'm glad to hear you refused the Reclast...I know from my mother's experience it can cause more problems than its worth. My osteoporosis is moderate, although I haven't been back in to see how much it has progressed. I'm without insurance (believe me I've tried, been declined, appealed, but thats not the issue here) so I can't really give you any medically related advice to help, but I wanted you to know I've had the same symptoms, and hate it as well. The only advice I can give is to try and get out to the areas you enjoyed before all this stuff, and take a camera. Sit on a rock or a picnic bench and just take pictures. Its not quite the same, but you can still get out.
I have experience some of what you said but I didn't associate it with "adrenaline rushes". I didn't know that's what you call it. I do have sleep disturbances all the time, I associate that w/ PSC symptoms. To my knowledge losing weight is another symptom of PSC. I have lost 27lbs or maybe even 30lbs since my gallbladder was remove Nov 2011/ I think my PSC symptoms were slowly progressing before I had the surgery, then in the next 7 months the gradually came on stronger & stronger which lead to my diagnosis on June 2nd 2012.
I am 5'5 & weight is 152lb . Seem like my weight has stabilized at that point when I use to weight 180lbs I was working out had a symetrical bodybuilder physique. I lost a lot of body fat, I am really cut & defined now, yes my muscles are smaller like my biceps, I still have muscle tone thighs just w/ no fat there..
For my sleep I do take Xanax to help me to relax so I can fall asleep I take .5mg at night along w/ my Hydroxyzine which both cause drowsyness. That has helped me to fall asleep but I still get sleep disturbances , my nightly sleep is always broken up . I don't think I get anymore than 4 hours sleep before waking up .. Now sometimes I do smoke a little pot that also helps me to knock out at night . I don't like lying down in the bed looking wild eyed or tossing in turning for 2 hours before falling asleep.
So from my understanding having PSC or any kind of liver disease you will experience sleep disturbences, guess in your book its adrenaline rush....
I don't know how these doctors can even state that PSC does not cause weight lost when some people have digestive issues , loss of appetite which will cause you to lose weight.
that link says it. I lost 27lbs or maybe even 30lbs.. I didn't like looking at myself either, I thought I had cancer... but my symptoms started to actively progressing in month of May which lead me to the ER for my diagnosis on June 2nd. I have an app on my phone where I am keeping up with my calories I take in a day.. I am getting about 2700 - 3000 calories a day ..one day I got 4012 calories.. I have not started gaining weight.. I am going to stop obsessing over it , my doctor said I will gain weight back eventually. But for months after my gallbladder removed I had no appetite, food upset my stomach, everytime I ate I ran to the bathroom. So I think my digestive issues had a lot to do w/ the weight loss , & my intestines was not getting the bile it needed to properly absorb & digest foods.
So I don't know how doctors can say that weight loss is not associated w/ PSC
Crixus
Theresa said:
Hi Cynthia
I was diagnosed with PBC then doctor said PSC now he is back to PBC but he says no matter which one outcome is the same. I initially went to my doctor back in March 2011 due to sudden weight loss and after many months of bloodwork scans ultrasounds MRI and specialists I was diagnosed in November. Funny thing is my GI says my weight loss has nothing to do with my disease which after reading up on it I feel it is a big factor to the weight loss. I am 5'7 and have lost close to 25 lbs weight that I didnot need to lose. I know exactly how you feel about the shorts and sleeveless tops I hated looking at my legs and arms for the longest time I had just gotten to a point where I was toning up before my diagnosis going to the gym etc but now I find it hard to keep up with the rapid weight loss and loose skin. I have started wearing tank tops again and longer shorts I am a beautiful person inside and outside and if someone doesn't like the way my arms or legs look then they don't have to look at them. I keep active walking my 2 dogs several times a day plan on going back to the gym and eat healthy. The best thing we can do with this disease is stay positive and not let it destroy the life we have ahead of us.
I just ordered Ox Bile supplement & I will be taking it with my food when I eat... I don't see where it will hurt anything since we are not getting the bile needed for the absorption of fat. I have been noticing in my stool that it has oily look to it because fatty foods go straight through you..
bubba29 said:
i don't have PSC but my dad does. he takes the ox bile before a fatty meal. it is hard to say whether it works or not. he is in remission and doesn't have problems retaining weight. he takes it because of the awareness that fat absorption is important. it has been shown to reduce the amount of fat in stool samples of people who had previous fat absorption issues.
Can I apply for medicaid? because I pay for my health insurance now $200 a month, I am not working & if it was not for the help of my family and friends giving me money I don't know how I could maintain my health insurance, but I def need it because I have been diagnosed with PSC and possible UC. If people like us can get it let me know what I need to do?
Crixus danabee said:
Have you applied for Medicaid?
Waterleaf said:
I never knew how to describe what I was feeling in my stomach. Adrenaline rush pretty much says it all. It has disrupted my sleep, and I have tried everything you have as well, with no noticable results. Its hard when you wake up in the morning and just don't feel you can do anything, much as your mind wants too. I used to be muscular and fit, but last year after a lot of problems and a few hospital admissions, I had lost all muscle I had, and lost about 25 lbs. I don't wear shorts or sleevless shirts either. I feel upset at times when people I know invite me on a hike, and I know I can't do it. I'm glad to hear you refused the Reclast...I know from my mother's experience it can cause more problems than its worth. My osteoporosis is moderate, although I haven't been back in to see how much it has progressed. I'm without insurance (believe me I've tried, been declined, appealed, but thats not the issue here) so I can't really give you any medically related advice to help, but I wanted you to know I've had the same symptoms, and hate it as well. The only advice I can give is to try and get out to the areas you enjoyed before all this stuff, and take a camera. Sit on a rock or a picnic bench and just take pictures. Its not quite the same, but you can still get out.
I can't imagine how I would get through this without the health insurance we have in Canada. It is incredible that someone has to be burdened with worrying about paying medical costs after being diagnosed with such a devestating disease. I really don't have any other symptons right now other then the weight loss and have not gained any weight back. The thing that pisses me off is my GI tells me to go live life as I normally would well now my life will never be the way it use to. They have no idea how we feel or what we go thru as they have never experienced this other then what they have read in a medical text book.
Crixus said:
Hi Theresa,
I don't know how these doctors can even state that PSC does not cause weight lost when some people have digestive issues , loss of appetite which will cause you to lose weight.
that link says it. I lost 27lbs or maybe even 30lbs.. I didn't like looking at myself either, I thought I had cancer... but my symptoms started to actively progressing in month of May which lead me to the ER for my diagnosis on June 2nd. I have an app on my phone where I am keeping up with my calories I take in a day.. I am getting about 2700 - 3000 calories a day ..one day I got 4012 calories.. I have not started gaining weight.. I am going to stop obsessing over it , my doctor said I will gain weight back eventually. But for months after my gallbladder removed I had no appetite, food upset my stomach, everytime I ate I ran to the bathroom. So I think my digestive issues had a lot to do w/ the weight loss , & my intestines was not getting the bile it needed to properly absorb & digest foods.
So I don't know how doctors can say that weight loss is not associated w/ PSC
Crixus
Theresa said:
Hi Cynthia
I was diagnosed with PBC then doctor said PSC now he is back to PBC but he says no matter which one outcome is the same. I initially went to my doctor back in March 2011 due to sudden weight loss and after many months of bloodwork scans ultrasounds MRI and specialists I was diagnosed in November. Funny thing is my GI says my weight loss has nothing to do with my disease which after reading up on it I feel it is a big factor to the weight loss. I am 5'7 and have lost close to 25 lbs weight that I didnot need to lose. I know exactly how you feel about the shorts and sleeveless tops I hated looking at my legs and arms for the longest time I had just gotten to a point where I was toning up before my diagnosis going to the gym etc but now I find it hard to keep up with the rapid weight loss and loose skin. I have started wearing tank tops again and longer shorts I am a beautiful person inside and outside and if someone doesn't like the way my arms or legs look then they don't have to look at them. I keep active walking my 2 dogs several times a day plan on going back to the gym and eat healthy. The best thing we can do with this disease is stay positive and not let it destroy the life we have ahead of us.
Yes it totally BLOWS here in the USA , our for profit healthcare system.. When you get sick you have to worry about not getting well, but can I afford to get sick. I mean really it is crazy how these RICH politicians lie about healthcare.. You see when you are MEGA rich you can afford to get sick, getting care is their last worry because they get the BEST OF THE BEST..
It's a no win situation with average people, they make applying for medicare so hard. I just pray & hope I can find some kind of assistance.
Crixus Theresa said:
I can't imagine how I would get through this without the health insurance we have in Canada. It is incredible that someone has to be burdened with worrying about paying medical costs after being diagnosed with such a devestating disease. I really don't have any other symptons right now other then the weight loss and have not gained any weight back. The thing that pisses me off is my GI tells me to go live life as I normally would well now my life will never be the way it use to. They have no idea how we feel or what we go thru as they have never experienced this other then what they have read in a medical text book.
Crixus said:
Hi Theresa,
I don't know how these doctors can even state that PSC does not cause weight lost when some people have digestive issues , loss of appetite which will cause you to lose weight.
that link says it. I lost 27lbs or maybe even 30lbs.. I didn't like looking at myself either, I thought I had cancer... but my symptoms started to actively progressing in month of May which lead me to the ER for my diagnosis on June 2nd. I have an app on my phone where I am keeping up with my calories I take in a day.. I am getting about 2700 - 3000 calories a day ..one day I got 4012 calories.. I have not started gaining weight.. I am going to stop obsessing over it , my doctor said I will gain weight back eventually. But for months after my gallbladder removed I had no appetite, food upset my stomach, everytime I ate I ran to the bathroom. So I think my digestive issues had a lot to do w/ the weight loss , & my intestines was not getting the bile it needed to properly absorb & digest foods.
So I don't know how doctors can say that weight loss is not associated w/ PSC
Crixus
Theresa said:
Hi Cynthia
I was diagnosed with PBC then doctor said PSC now he is back to PBC but he says no matter which one outcome is the same. I initially went to my doctor back in March 2011 due to sudden weight loss and after many months of bloodwork scans ultrasounds MRI and specialists I was diagnosed in November. Funny thing is my GI says my weight loss has nothing to do with my disease which after reading up on it I feel it is a big factor to the weight loss. I am 5'7 and have lost close to 25 lbs weight that I didnot need to lose. I know exactly how you feel about the shorts and sleeveless tops I hated looking at my legs and arms for the longest time I had just gotten to a point where I was toning up before my diagnosis going to the gym etc but now I find it hard to keep up with the rapid weight loss and loose skin. I have started wearing tank tops again and longer shorts I am a beautiful person inside and outside and if someone doesn't like the way my arms or legs look then they don't have to look at them. I keep active walking my 2 dogs several times a day plan on going back to the gym and eat healthy. The best thing we can do with this disease is stay positive and not let it destroy the life we have ahead of us.
Yes it totally BLOWS here in the USA , our for profit healthcare system.. When you get sick you have to worry about not getting well, but can I afford to get sick. I mean really it is crazy how these RICH politicians lie about healthcare.. You see when you are MEGA rich you can afford to get sick, getting care is their last worry because they get the BEST OF THE BEST..
It's a no win situation with average people, they make applying for medicare so hard. I just pray & hope I can find some kind of assistance.
Crixus Theresa said:
I can't imagine how I would get through this without the health insurance we have in Canada. It is incredible that someone has to be burdened with worrying about paying medical costs after being diagnosed with such a devestating disease. I really don't have any other symptons right now other then the weight loss and have not gained any weight back. The thing that pisses me off is my GI tells me to go live life as I normally would well now my life will never be the way it use to. They have no idea how we feel or what we go thru as they have never experienced this other then what they have read in a medical text book.
Crixus said:
Hi Theresa,
I don't know how these doctors can even state that PSC does not cause weight lost when some people have digestive issues , loss of appetite which will cause you to lose weight.
that link says it. I lost 27lbs or maybe even 30lbs.. I didn't like looking at myself either, I thought I had cancer... but my symptoms started to actively progressing in month of May which lead me to the ER for my diagnosis on June 2nd. I have an app on my phone where I am keeping up with my calories I take in a day.. I am getting about 2700 - 3000 calories a day ..one day I got 4012 calories.. I have not started gaining weight.. I am going to stop obsessing over it , my doctor said I will gain weight back eventually. But for months after my gallbladder removed I had no appetite, food upset my stomach, everytime I ate I ran to the bathroom. So I think my digestive issues had a lot to do w/ the weight loss , & my intestines was not getting the bile it needed to properly absorb & digest foods.
So I don't know how doctors can say that weight loss is not associated w/ PSC
Crixus
Theresa said:
Hi Cynthia
I was diagnosed with PBC then doctor said PSC now he is back to PBC but he says no matter which one outcome is the same. I initially went to my doctor back in March 2011 due to sudden weight loss and after many months of bloodwork scans ultrasounds MRI and specialists I was diagnosed in November. Funny thing is my GI says my weight loss has nothing to do with my disease which after reading up on it I feel it is a big factor to the weight loss. I am 5'7 and have lost close to 25 lbs weight that I didnot need to lose. I know exactly how you feel about the shorts and sleeveless tops I hated looking at my legs and arms for the longest time I had just gotten to a point where I was toning up before my diagnosis going to the gym etc but now I find it hard to keep up with the rapid weight loss and loose skin. I have started wearing tank tops again and longer shorts I am a beautiful person inside and outside and if someone doesn't like the way my arms or legs look then they don't have to look at them. I keep active walking my 2 dogs several times a day plan on going back to the gym and eat healthy. The best thing we can do with this disease is stay positive and not let it destroy the life we have ahead of us.