Truth
Shortly before my DS I had a blood clot in my leg and then discovered I had clotting disorders -- so I will be on coumadin for life. I get my coumadin level checked weekly. Taking coumadin does not prevent me from taking the vitamins I need nor getting the nutrition I need. Yes, you are right about the K. I do not take K -- but my labs are good. I had to use a J-tube for nutrition for six months.
ETA: You are complaining about the surgeon moving across town. Most of us have to travel across several states or countries to get to our surgeon.
ETA: You are complaining about the surgeon moving across town. Most of us have to travel across several states or countries to get to our surgeon.
I've gained some of it back and I don't like it one bit! I'm working to take it off. 
I'm sorry your son is going through this but it sounds to me as if there was not enough information (either given or understood) at the time of surgery. I can only imagine you want to find someone to blame for your sons decline. I would too.
At 500lbs the possibility of complication rate goes way up for ANY surgery. When you lose weight rapidly, you have a greater risk of gallbladder attack.....he should have been, at the very least, on Ursodiol to cut this risk way down, if not had his gallbladder taken out at the time of surgery, considering his size.
Malabsorption is a thing most of us love about this surgery, however it is a beast that has to be tamed and you have to have control over it. It doesn't sound like that is happening.
Also, muscle loss is absolutely inevitable with rapid weight loss - every single one of us has had it. However, we can reduce the damage by exercising and the correct nutrition.
The complications he is having do not sound as if they are solely related to the DS or even poor nutrition but also related to the risks of living as a morbidly obese person and what obesity does to a body.
I'm sorry you are suffering but there are a lot of people with a lot of information here....mostly, we know people who can help (like most of our surgeons).
I would say, without question, he needs to be with a doctor that knows the DS or Mayo clinic needs to be willing to consult with a well-known DS doc. Which Mayo is he at? Someone can certainly recommend a DS doc in that area.
I wish you both nothing but the best.
At 500lbs the possibility of complication rate goes way up for ANY surgery. When you lose weight rapidly, you have a greater risk of gallbladder attack.....he should have been, at the very least, on Ursodiol to cut this risk way down, if not had his gallbladder taken out at the time of surgery, considering his size.
Malabsorption is a thing most of us love about this surgery, however it is a beast that has to be tamed and you have to have control over it. It doesn't sound like that is happening.
Also, muscle loss is absolutely inevitable with rapid weight loss - every single one of us has had it. However, we can reduce the damage by exercising and the correct nutrition.
The complications he is having do not sound as if they are solely related to the DS or even poor nutrition but also related to the risks of living as a morbidly obese person and what obesity does to a body.
I'm sorry you are suffering but there are a lot of people with a lot of information here....mostly, we know people who can help (like most of our surgeons).
I would say, without question, he needs to be with a doctor that knows the DS or Mayo clinic needs to be willing to consult with a well-known DS doc. Which Mayo is he at? Someone can certainly recommend a DS doc in that area.
I wish you both nothing but the best.
7/19/09 - DS with Dr. Alfons Pomp
7/11/12 - tummy tuck, UBL, larg lipo sculpting of torso, lipo of "buffalo hump" with Dr. Sauceda
You said in one of your earlier posts that your son can't see his original surgeon because he moved "to the other side of town". But, since so many of us have traveled across country or even to other countries, traveling to the other side of town just doesn't seem unreasonable to me at all.
Also, I know a lot of mothers with sons who are 500-600 or more pounds get used to their sons being very dependent on them. Then, when their sons lose weight and grow more independent, they may have trouble adjusting to their son's new life. I don't know you, I don't want to insult you and this may not apply to you at all, but, since you say you "want your old son back", do you think maybe this might play a small part in your distress?
Please post more details, or, better yet, encourage your son to join the forum so the experienced folks here can help him get healthier. Already, after losing 300+ pounds, he can expect to live a longer and better life and, hopefully he just needs some help getting his vitamins and protein levels on track.
Best of luck to you and your son!
Also, I know a lot of mothers with sons who are 500-600 or more pounds get used to their sons being very dependent on them. Then, when their sons lose weight and grow more independent, they may have trouble adjusting to their son's new life. I don't know you, I don't want to insult you and this may not apply to you at all, but, since you say you "want your old son back", do you think maybe this might play a small part in your distress?
Please post more details, or, better yet, encourage your son to join the forum so the experienced folks here can help him get healthier. Already, after losing 300+ pounds, he can expect to live a longer and better life and, hopefully he just needs some help getting his vitamins and protein levels on track.
Best of luck to you and your son!
On May 24, 2010 at 2:59 PM Pacific Time, attheendofmyrope wrote:
You said in one of your earlier posts that your son can't see his original surgeon because he moved "to the other side of town". But, since so many of us have traveled across country or even to other countries, traveling to the other side of town just doesn't seem unreasonable to me at all. Also, I know a lot of mothers with sons who are 500-600 or more pounds get used to their sons being very dependent on them. Then, when their sons lose weight and grow more independent, they may have trouble adjusting to their son's new life. I don't know you, I don't want to insult you and this may not apply to you at all, but, since you say you "want your old son back", do you think maybe this might play a small part in your distress?
Please post more details, or, better yet, encourage your son to join the forum so the experienced folks here can help him get healthier. Already, after losing 300+ pounds, he can expect to live a longer and better life and, hopefully he just needs some help getting his vitamins and protein levels on track.
Best of luck to you and your son!
I lost 240 pounds in two years. However, the speed of his loss is not what concerns me here.
Please tell us the following in detail:
1. What is he eating each day? In particular, how many grams of animal source protein (from food or protein shakes) does he take in?
2. When did he last have a comprehensive set of DS-appropriate labs done? Please post these lab test results along with the "normal" levels listed on his lab work.
3. What does he take in supplements each day and how much?
In other posts on your thread you mention some really awful medical issues, in particular that recurring clot problem. That blows :-(. It is, however, not a DS specific problem.
Yes, of course he has lost a lot of muscle mass. That always happens with rapid weight loss. What "other tissue" is he losing and how do you know this is so?
Please give us more details, including what his current treatment regimen is, such as for his vomiting. We will try to put our collective heads together and give you input about what has worked for some of us, even if we have not been in as dire straits as he is.
However, be assured that there *are* some people here who have been in extremely dire straits and have indeed come through. One lady, Alla, comes to mind. She is from NYC. She had some horrific complications after her DS and was at death's door for a long time, and was an even longer time recovering. She was able to eat NOTHING for the longest time, got all of her nutrition by tube and IV. If I recall correctly, she had to have her esophagus separated from her stomach for ages and ages. Eventually it was successfully reconnected and she had to learn how to eat all over again.
She posts here occasionally. She is alive and doing remarkably well for someone who was so desperately ill.
Once in a while someone just cannot maintain a minimum nutrition level with the DS and must have it reversed. It is plain from the information that you have posted thus far that your son is FAR from needing that done. I suspect that he, and you, got lousy education and followup for what he needed to be eating, drinking and supplementing, and equally poor treatment of whatever is causing him to vomit and have problems eating. The fact that you do not know about digestive enzymes such as Creon tells me that there are multiple paths he has not yet taken to improve his situation.
What he needs is a VERY experienced team of people who understand issues of malnutrition, and probably a good gastroenterological team. Hopefully he will get this at Mayo. My first suggestion to you is that you become a very vocal advocate for getting him CORRECTLY NOURISHED FOR THE DS digestive tract. I doubt that they know what this means even at Mayo. Please push hard on this issue. Keep bugging the docs about what they know about DS SPECIFIC NUTRITION and HOW they know it. If they mention gastric bypass, they're talking about the wrong thing. They need to be thinking along the lines of how people get nutrition issues with stuff like short gut syndrome or even with cystic fibrosis. That kind of thing would be closer.
However, there is DS specific nutrition education information out there, so they CAN get it and do it RIGHT.
I would suggest to you that you contact the surgeon who worked out the DS as it is currently performed, Dr. Douglas Hess. His website is www.dshess.com . His phone number is publicly listed. Get the address, call directory assistance and call him yourself. He will welcome your call. I have spoken with him a few times myself. Although he no longer does surgery (is "retired"), he remains active in research, is still licensed to practice medicine, and he would be a valuable source of information and, hopefully, some reassurance to you that your son can indeed bounce back from this situation.
Please tell us the following in detail:
1. What is he eating each day? In particular, how many grams of animal source protein (from food or protein shakes) does he take in?
2. When did he last have a comprehensive set of DS-appropriate labs done? Please post these lab test results along with the "normal" levels listed on his lab work.
3. What does he take in supplements each day and how much?
In other posts on your thread you mention some really awful medical issues, in particular that recurring clot problem. That blows :-(. It is, however, not a DS specific problem.
Yes, of course he has lost a lot of muscle mass. That always happens with rapid weight loss. What "other tissue" is he losing and how do you know this is so?
Please give us more details, including what his current treatment regimen is, such as for his vomiting. We will try to put our collective heads together and give you input about what has worked for some of us, even if we have not been in as dire straits as he is.
However, be assured that there *are* some people here who have been in extremely dire straits and have indeed come through. One lady, Alla, comes to mind. She is from NYC. She had some horrific complications after her DS and was at death's door for a long time, and was an even longer time recovering. She was able to eat NOTHING for the longest time, got all of her nutrition by tube and IV. If I recall correctly, she had to have her esophagus separated from her stomach for ages and ages. Eventually it was successfully reconnected and she had to learn how to eat all over again.
She posts here occasionally. She is alive and doing remarkably well for someone who was so desperately ill.
Once in a while someone just cannot maintain a minimum nutrition level with the DS and must have it reversed. It is plain from the information that you have posted thus far that your son is FAR from needing that done. I suspect that he, and you, got lousy education and followup for what he needed to be eating, drinking and supplementing, and equally poor treatment of whatever is causing him to vomit and have problems eating. The fact that you do not know about digestive enzymes such as Creon tells me that there are multiple paths he has not yet taken to improve his situation.
What he needs is a VERY experienced team of people who understand issues of malnutrition, and probably a good gastroenterological team. Hopefully he will get this at Mayo. My first suggestion to you is that you become a very vocal advocate for getting him CORRECTLY NOURISHED FOR THE DS digestive tract. I doubt that they know what this means even at Mayo. Please push hard on this issue. Keep bugging the docs about what they know about DS SPECIFIC NUTRITION and HOW they know it. If they mention gastric bypass, they're talking about the wrong thing. They need to be thinking along the lines of how people get nutrition issues with stuff like short gut syndrome or even with cystic fibrosis. That kind of thing would be closer.
However, there is DS specific nutrition education information out there, so they CAN get it and do it RIGHT.
I would suggest to you that you contact the surgeon who worked out the DS as it is currently performed, Dr. Douglas Hess. His website is www.dshess.com . His phone number is publicly listed. Get the address, call directory assistance and call him yourself. He will welcome your call. I have spoken with him a few times myself. Although he no longer does surgery (is "retired"), he remains active in research, is still licensed to practice medicine, and he would be a valuable source of information and, hopefully, some reassurance to you that your son can indeed bounce back from this situation.
On May 24, 2010 at 3:02 PM Pacific Time, Elizabeth N. wrote:
I lost 240 pounds in two years. However, the speed of his loss is not what concerns me here. Please tell us the following in detail:
1. What is he eating each day? In particular, how many grams of animal source protein (from food or protein shakes) does he take in?
2. When did he last have a comprehensive set of DS-appropriate labs done? Please post these lab test results along with the "normal" levels listed on his lab work.
3. What does he take in supplements each day and how much?
In other posts on your thread you mention some really awful medical issues, in particular that recurring clot problem. That blows :-(. It is, however, not a DS specific problem.
Yes, of course he has lost a lot of muscle mass. That always happens with rapid weight loss. What "other tissue" is he losing and how do you know this is so?
Please give us more details, including what his current treatment regimen is, such as for his vomiting. We will try to put our collective heads together and give you input about what has worked for some of us, even if we have not been in as dire straits as he is.
However, be assured that there *are* some people here who have been in extremely dire straits and have indeed come through. One lady, Alla, comes to mind. She is from NYC. She had some horrific complications after her DS and was at death's door for a long time, and was an even longer time recovering. She was able to eat NOTHING for the longest time, got all of her nutrition by tube and IV. If I recall correctly, she had to have her esophagus separated from her stomach for ages and ages. Eventually it was successfully reconnected and she had to learn how to eat all over again.
She posts here occasionally. She is alive and doing remarkably well for someone who was so desperately ill.
Once in a while someone just cannot maintain a minimum nutrition level with the DS and must have it reversed. It is plain from the information that you have posted thus far that your son is FAR from needing that done. I suspect that he, and you, got lousy education and followup for what he needed to be eating, drinking and supplementing, and equally poor treatment of whatever is causing him to vomit and have problems eating. The fact that you do not know about digestive enzymes such as Creon tells me that there are multiple paths he has not yet taken to improve his situation.
What he needs is a VERY experienced team of people who understand issues of malnutrition, and probably a good gastroenterological team. Hopefully he will get this at Mayo. My first suggestion to you is that you become a very vocal advocate for getting him CORRECTLY NOURISHED FOR THE DS digestive tract. I doubt that they know what this means even at Mayo. Please push hard on this issue. Keep bugging the docs about what they know about DS SPECIFIC NUTRITION and HOW they know it. If they mention gastric bypass, they're talking about the wrong thing. They need to be thinking along the lines of how people get nutrition issues with stuff like short gut syndrome or even with cystic fibrosis. That kind of thing would be closer.
However, there is DS specific nutrition education information out there, so they CAN get it and do it RIGHT.
I would suggest to you that you contact the surgeon who worked out the DS as it is currently performed, Dr. Douglas Hess. His website is www.dshess.com . His phone number is publicly listed. Get the address, call directory assistance and call him yourself. He will welcome your call. I have spoken with him a few times myself. Although he no longer does surgery (is "retired"), he remains active in research, is still licensed to practice medicine, and he would be a valuable source of information and, hopefully, some reassurance to you that your son can indeed bounce back from this situation.
Back to your regular programming.
~Martie~
"And pride - don't keep it all inside. Don't keep your aching celebrating, wonder-making heart alone. Write your own song!"
HW 360 / SW 347 / CW 198 / GW 180 
Angel to Relifeagain (Marz)
Most Active
Recent Topics
