Malabsorption after 7 years....
Hi there - this is terrible. But I think there may be great opportunity here right? By now, shouldn't there be a standard at the very least that all RNY'ers should follow? I had the VSG, so this hasn't been a problem for me... but there has got to be something? Jeez, how painful -- hang in there and fight the battle!
Safe Journey,
Rhonda
Hi Gina,
So very sorry to hear about your issues. Thank you for posting about this. It certainly makes us all jar back to reality on being aware of our change in body function, nutrition, and supplements. It sounds like you have done everything you were told to do and still developed some side effects.
Your comment, "I guess after recently having MD's (and some family members) look me in the eye and tell me basically "well...you're the one that had the surgery and did this to yourself....blah blah blah"...." made me wonder if they would rather you had stayed obese and take blame for doing nothing? Would they have the same attitude if you had cancer and developed side effects from chemo, or would they have compassion? Obesity is every bit as deadly a disease, just slower in action. You did what you felt was the best for you at that time and by some twist of fate had this happen.
I don't have any words of wisdom, but want you to know you are in my prayers.
AnnieZ
So very sorry to hear about your issues. Thank you for posting about this. It certainly makes us all jar back to reality on being aware of our change in body function, nutrition, and supplements. It sounds like you have done everything you were told to do and still developed some side effects.
Your comment, "I guess after recently having MD's (and some family members) look me in the eye and tell me basically "well...you're the one that had the surgery and did this to yourself....blah blah blah"...." made me wonder if they would rather you had stayed obese and take blame for doing nothing? Would they have the same attitude if you had cancer and developed side effects from chemo, or would they have compassion? Obesity is every bit as deadly a disease, just slower in action. You did what you felt was the best for you at that time and by some twist of fate had this happen.
I don't have any words of wisdom, but want you to know you are in my prayers.
AnnieZ
I dont have the same type of surgery as you do but i can surely sympathize since i was also morbidly obese.....and now your health is suffering once again...sigh.
I can suggest but one thing....get chewable vitamins.....and keep them in your mouth for alteast a minute after u have chewed the thing up. I take viactiv and yes it has 20 calories but it taste decent and u can suck on it and let your mouth absorb it so that it goes right into your blood stream......u dont have to wait for it to disolve in your tummy and having to risk it not being absorbed by your intestine as it may. Sublingual vitamins are the way to go....rapid absorbsion its worth a try i sure hope something works for you.....i will be thinking good thoughts for you.
Noel
I can suggest but one thing....get chewable vitamins.....and keep them in your mouth for alteast a minute after u have chewed the thing up. I take viactiv and yes it has 20 calories but it taste decent and u can suck on it and let your mouth absorb it so that it goes right into your blood stream......u dont have to wait for it to disolve in your tummy and having to risk it not being absorbed by your intestine as it may. Sublingual vitamins are the way to go....rapid absorbsion its worth a try i sure hope something works for you.....i will be thinking good thoughts for you.
Noel
All that spirits desire, spirits attain.
Hi Gina,
Wow I am sorry to hear you are having a difficult journey now. Since you are going to a doctor that specializes in homeopathic treatments have you two discussed the outbreak of shingles to determine if there is a correlation of that and something else that may be causing the low B6, B12 & Vitamin D levels and malabsorption issues? Some event bought out the shingles & I wonder if it was your failing levels or some thing else that may be causing you issues? The Shingles virus is reactived by certain medical events: Stress, Immune Deficiency, Cancer, etc. Some of the members of this family of viruses has caused people I know the strangest health issues to occur after they have an initial episodic incident.
Be sure to have your homeopath check to see if there a relationship of the issues you are experiencing.
I'll keep you in my prayers!
I read most of the responses and your responses to those responses, etc.
I'll be 14 this week. Rather than defend my docs' program as "my doing the right thing", all I can say is that they had us doing as much as they knew then. We were on the correct forms of A, D, E, iron, but not calcium or B12. And no B complex, etc.
So, it's not like we're saying your medical professionals are "wrong" any more than mine were back in the 90's.
I attend these ASMBS conferences every year and every year they add another nugget of knowledge, but it won't be fast enough for 250,000 of us being done per year now. Putting ppl on the RIGHT kind of D at the RIGHT dose is another 10 yrs away, at best. Discovering that there IS a RIGHT form of D was new this year!
So, while many docs will write for rx vit D or the calcitriol that you are taking, well, the bones will continue to go porous and then soft. Rickets is sadly, quite a common dx in our world now, just like our own special form of thiamine deficiency, Bariatric Beri Beri. Most of the rest of us went into WLS already deficient in vit D AND with bone mass loss due to D being stored in adipose tissue AND all the massive wt losses we've done before.
Again, running D levels pre-op and full body dexascans pre-op was a hot topic this year, but sadly, in small practices, the docs have to choose whether to attend either the surgical techniques OR how to run a WLS practice OR legal ramifications OR nutritional stuff OR behavioral stuff. Quite a menu to have to pick and choose!
I want my surgeon to go over --------> there and stay up on surgical equipment, practices, styles of moving limbs, etc.
It is not a slap in the face to you OR your doc that he doesn't have a staff of 12 to attend a class on everything! And the classes are NOT cheap, so again, a moderately small practice might not be able to close up and send the whole staff, let alone pay $300-500 per class per person.
That said, you've got lots of hints here from different ppl. I have plans for each surgery type AND pre-ops AND sadly, a "fixit" plan that deal with labs exactly as you describe. While the general thought is that there is no way one fixit plan fits proximal rny and distal rny like me AND DS, but sadly, malabsorption is our friend and our enemy. And in the end, it's going to be the same issues for all of us.
If you can get TPN to bring you back up, that's fabulous, but then you have to grab you and HOLD you up. Some things to remember, and you can check many published articles, but may have to check a dozen on each subject, but here:
1. multi needs to be COMPLETE, not expensive, such as a Centrum clone
2. iron needs to be NOT fe sulfate (and I'm not a fan of any of the ferrous forms--too brutal, lousy absorption). I know the rx have the whole ball of wax in them, but all you can count on is the vit C. Minimal folic and too little IF + B12, too late.
3. iron needs to be taken with vit C, and we're finding a low doze of copper helps the absorption, at least one hour away from : caffeine, dairy, egg, whole grain, other vites, minerals meds. Obviously, folic and B12 can be taken near it. The vit C only has to be ascorbic acid, not buffered or ester. Iron CAN be taken with fruit or veggie, and I encourage it, both as a tummy protector AND to stimulate a bit of acid, which makes iron happy
4. vit A has to be dry form retinol (beta carotene does not convert, oils are not absorbed)
5. vit D has to be dry D3 (D2 -ergo - does not convert and oils are not absorbed)
6. E has to be dry form d-alpha succinate (7 other forms of E do not convert and oils are not absorbed)
7. Is K malabsorbed? Books say so. I take it myself, and many do, but I can't say for sure it SHOULD. If it is, has to be dry form of K1. If you know about K2, and wish to take it, it also has to be dry, and in the MK7 form
8. B vites. B1 and B6 are the most common cr
ash sites us in the vites we can absorb via swallow. For a beginner, a B complex + the 2 multis are usually enough, as long as someone is testing
9. B12 is a whole other animal. We lost IF whenever the stomach is messed with. IF production is changed, even with a sleeve or DS. Some ppl do not genetically produce IF, such as my DIL who was dangerously deficient at age 31, pre-op her WLS. Everyone produces less and less IF after age 50. It's wise to supplement sublingually if you've had ANY WLS, because we simply don't eat as much red meat as we DID.
Then you have to decide if you want to just be "between the pegs" on old lab ranges, 200-900-ish. OR follow newer studies, showing 800 to be the bottom acceptable range. There are plenty of published studies showing brain damage at levels of 400, though lab ranges haven't changed for a decade or more.
Because you are so depleted, you may have to rely on weekly or daily shots for life. I prefer weekly myself, since I'm well over 50 and I like my levels over 1000. And shots are way, way cheaper than sublingual.
10. zinc is another malabsorbed element. Doesn't usually take much to hold it, once you get up there. My preference is chelated zinc gluconate. Cheap, small, easy to find. I take 50mg x 4, but I'm not recommending that to anyone else.
11. calcium has to NOT be carbonate, oyster shell, coral or dolomite. It has to be citrate and/or microcrystalline hydroxyappetite and/or gluconate-lactate. It's too late for me, dx with osteoporosis when I turned 50 - 8 yrs ago, I take all of them! And hold my vit D levels above the bottom therapeutic level of 70, and pth below 25.
while osteopenia and osteporosis are just words, the reality is that I've been denied life insurance; long term care insurance and long term disability insurance. I've been actively treating my crispy bones with all resources available and I've only shown a 5% improvement in the last 5 yrs.
12. protein. people will argue this point as long as there are people. I'm a fan of whey protein. It's the best bioavailability rating of all the proteins, so where I get 30g of protein that my body can use, someone else might think a bowl of pinto beans is the same. Nope. You can take it or leave it, but sniff around before choosing one. I take 180g (6 x 30g) , but then I've already paid the price for what was not known in the 90's, not paying any more. I want to hold my weight and I want my docs to swoon with the sheer joy of reading my labs. Not everyone takes it as seriously as I do.
I'll be 14 this week. Rather than defend my docs' program as "my doing the right thing", all I can say is that they had us doing as much as they knew then. We were on the correct forms of A, D, E, iron, but not calcium or B12. And no B complex, etc.
So, it's not like we're saying your medical professionals are "wrong" any more than mine were back in the 90's.
I attend these ASMBS conferences every year and every year they add another nugget of knowledge, but it won't be fast enough for 250,000 of us being done per year now. Putting ppl on the RIGHT kind of D at the RIGHT dose is another 10 yrs away, at best. Discovering that there IS a RIGHT form of D was new this year!
So, while many docs will write for rx vit D or the calcitriol that you are taking, well, the bones will continue to go porous and then soft. Rickets is sadly, quite a common dx in our world now, just like our own special form of thiamine deficiency, Bariatric Beri Beri. Most of the rest of us went into WLS already deficient in vit D AND with bone mass loss due to D being stored in adipose tissue AND all the massive wt losses we've done before.
Again, running D levels pre-op and full body dexascans pre-op was a hot topic this year, but sadly, in small practices, the docs have to choose whether to attend either the surgical techniques OR how to run a WLS practice OR legal ramifications OR nutritional stuff OR behavioral stuff. Quite a menu to have to pick and choose!
I want my surgeon to go over --------> there and stay up on surgical equipment, practices, styles of moving limbs, etc.
It is not a slap in the face to you OR your doc that he doesn't have a staff of 12 to attend a class on everything! And the classes are NOT cheap, so again, a moderately small practice might not be able to close up and send the whole staff, let alone pay $300-500 per class per person.
That said, you've got lots of hints here from different ppl. I have plans for each surgery type AND pre-ops AND sadly, a "fixit" plan that deal with labs exactly as you describe. While the general thought is that there is no way one fixit plan fits proximal rny and distal rny like me AND DS, but sadly, malabsorption is our friend and our enemy. And in the end, it's going to be the same issues for all of us.
If you can get TPN to bring you back up, that's fabulous, but then you have to grab you and HOLD you up. Some things to remember, and you can check many published articles, but may have to check a dozen on each subject, but here:
1. multi needs to be COMPLETE, not expensive, such as a Centrum clone
2. iron needs to be NOT fe sulfate (and I'm not a fan of any of the ferrous forms--too brutal, lousy absorption). I know the rx have the whole ball of wax in them, but all you can count on is the vit C. Minimal folic and too little IF + B12, too late.
3. iron needs to be taken with vit C, and we're finding a low doze of copper helps the absorption, at least one hour away from : caffeine, dairy, egg, whole grain, other vites, minerals meds. Obviously, folic and B12 can be taken near it. The vit C only has to be ascorbic acid, not buffered or ester. Iron CAN be taken with fruit or veggie, and I encourage it, both as a tummy protector AND to stimulate a bit of acid, which makes iron happy
4. vit A has to be dry form retinol (beta carotene does not convert, oils are not absorbed)
5. vit D has to be dry D3 (D2 -ergo - does not convert and oils are not absorbed)
6. E has to be dry form d-alpha succinate (7 other forms of E do not convert and oils are not absorbed)
7. Is K malabsorbed? Books say so. I take it myself, and many do, but I can't say for sure it SHOULD. If it is, has to be dry form of K1. If you know about K2, and wish to take it, it also has to be dry, and in the MK7 form
8. B vites. B1 and B6 are the most common cr
ash sites us in the vites we can absorb via swallow. For a beginner, a B complex + the 2 multis are usually enough, as long as someone is testing
9. B12 is a whole other animal. We lost IF whenever the stomach is messed with. IF production is changed, even with a sleeve or DS. Some ppl do not genetically produce IF, such as my DIL who was dangerously deficient at age 31, pre-op her WLS. Everyone produces less and less IF after age 50. It's wise to supplement sublingually if you've had ANY WLS, because we simply don't eat as much red meat as we DID.
Then you have to decide if you want to just be "between the pegs" on old lab ranges, 200-900-ish. OR follow newer studies, showing 800 to be the bottom acceptable range. There are plenty of published studies showing brain damage at levels of 400, though lab ranges haven't changed for a decade or more.
Because you are so depleted, you may have to rely on weekly or daily shots for life. I prefer weekly myself, since I'm well over 50 and I like my levels over 1000. And shots are way, way cheaper than sublingual.
10. zinc is another malabsorbed element. Doesn't usually take much to hold it, once you get up there. My preference is chelated zinc gluconate. Cheap, small, easy to find. I take 50mg x 4, but I'm not recommending that to anyone else.
11. calcium has to NOT be carbonate, oyster shell, coral or dolomite. It has to be citrate and/or microcrystalline hydroxyappetite and/or gluconate-lactate. It's too late for me, dx with osteoporosis when I turned 50 - 8 yrs ago, I take all of them! And hold my vit D levels above the bottom therapeutic level of 70, and pth below 25.
while osteopenia and osteporosis are just words, the reality is that I've been denied life insurance; long term care insurance and long term disability insurance. I've been actively treating my crispy bones with all resources available and I've only shown a 5% improvement in the last 5 yrs.
12. protein. people will argue this point as long as there are people. I'm a fan of whey protein. It's the best bioavailability rating of all the proteins, so where I get 30g of protein that my body can use, someone else might think a bowl of pinto beans is the same. Nope. You can take it or leave it, but sniff around before choosing one. I take 180g (6 x 30g) , but then I've already paid the price for what was not known in the 90's, not paying any more. I want to hold my weight and I want my docs to swoon with the sheer joy of reading my labs. Not everyone takes it as seriously as I do.
Michelle
RNY, distal, 10/5/94
P.S. My year + long absence has NOTHING to do with my WLS, or my type of WLS. See my profile.
Gina,
I can't tell you how excited I am to have read your post, though it is with mixed emotions. I'm saddened that there is actually someone else out there that is going through the same hell that I am going through. I was hoping there wasn't another person experiencing the same challenges. Please let me explain.
I had an open lap Roux-en-Y gastric exclusion on September 6, 2002. My surgeries were done at the Bariatric Treatment Center at Belvidere, IL, as I had to have a ventral hernia repair surgical procedure the next year.
I'm a Registered Nurse and did not go into this 'lightly' and did a lot of research on the best surgery procedure and facility and surgeon. I knew this would be a "tool" only and ensured I did things by the book. I made sure I had my annual labs drawn and read. In 2005, I started to feel drawn out and tired. I was working full time and going to school full time for two masters, one in nursing and one in business with a minor in health care administration. The surgeon said the lab work was fine, I was just pushing myself too hard.
I graduated in August, 2006 with my MSN/MBA/HCA. In December 26, 2006, I had emergency surgery for oophorectomy and had lost a significant amount of blood, along with post surgical healing problems. My life from this point has been spiralling slowly downward out of control. My hearing was the first to be effected. I started to have this horrible loud ringing in my ears. This occured not long after one of my patients yelled loudly in an enclosed room, so I attributed it to that occurrance. But the ringing became louder and louder. Then my balance was lost at times. I lost my night vision totally. I went to my doctor, then to another doctor, then to several more doctors; to no avail. All said the lab work were fine. I had my surgeon draw blood from Belvidere, IL, but still did not hear from them (like an idiot, did not call them to find out). Turned out my B-12 was severly deficient. [it turns out the B-12 was deficient in 2005 and should have been put on shots then]
None of the doctors that I went to could understand what was going on with me, when I went to the Belvidere clinic, all they tried to do was to CYA their B*TT, as I was their very last patient.....yes, their very last patient. They were closing shop. The hospital had closed 2 months prior and now the clinic was closing for good.
After months of feeling horrible, I finally found a doctor who knew about nutriutional values and their importance; Dr. Foellner ordered a Metagenics lab work up, which to this day I'll swear saved my life. It showed that almost all of my B vitamins were washed out as were many more of my vitamin and minerals. I now have the diagnosis of Malabsorption Syndrome and unfortunately I am unable to continue working as not only is my energy effected and is it hard to even pull myself out of bed some days, but my memory is also effected. There was almost 6 months straight when I could not drive d/t my memory and concentration being so bad.
Gina, if you run across anything that could possibly help, please pass it along to me, would you? I would appreciate it.
I can't tell you how excited I am to have read your post, though it is with mixed emotions. I'm saddened that there is actually someone else out there that is going through the same hell that I am going through. I was hoping there wasn't another person experiencing the same challenges. Please let me explain.
I had an open lap Roux-en-Y gastric exclusion on September 6, 2002. My surgeries were done at the Bariatric Treatment Center at Belvidere, IL, as I had to have a ventral hernia repair surgical procedure the next year.
I'm a Registered Nurse and did not go into this 'lightly' and did a lot of research on the best surgery procedure and facility and surgeon. I knew this would be a "tool" only and ensured I did things by the book. I made sure I had my annual labs drawn and read. In 2005, I started to feel drawn out and tired. I was working full time and going to school full time for two masters, one in nursing and one in business with a minor in health care administration. The surgeon said the lab work was fine, I was just pushing myself too hard.
I graduated in August, 2006 with my MSN/MBA/HCA. In December 26, 2006, I had emergency surgery for oophorectomy and had lost a significant amount of blood, along with post surgical healing problems. My life from this point has been spiralling slowly downward out of control. My hearing was the first to be effected. I started to have this horrible loud ringing in my ears. This occured not long after one of my patients yelled loudly in an enclosed room, so I attributed it to that occurrance. But the ringing became louder and louder. Then my balance was lost at times. I lost my night vision totally. I went to my doctor, then to another doctor, then to several more doctors; to no avail. All said the lab work were fine. I had my surgeon draw blood from Belvidere, IL, but still did not hear from them (like an idiot, did not call them to find out). Turned out my B-12 was severly deficient. [it turns out the B-12 was deficient in 2005 and should have been put on shots then]
None of the doctors that I went to could understand what was going on with me, when I went to the Belvidere clinic, all they tried to do was to CYA their B*TT, as I was their very last patient.....yes, their very last patient. They were closing shop. The hospital had closed 2 months prior and now the clinic was closing for good.
After months of feeling horrible, I finally found a doctor who knew about nutriutional values and their importance; Dr. Foellner ordered a Metagenics lab work up, which to this day I'll swear saved my life. It showed that almost all of my B vitamins were washed out as were many more of my vitamin and minerals. I now have the diagnosis of Malabsorption Syndrome and unfortunately I am unable to continue working as not only is my energy effected and is it hard to even pull myself out of bed some days, but my memory is also effected. There was almost 6 months straight when I could not drive d/t my memory and concentration being so bad.
Gina, if you run across anything that could possibly help, please pass it along to me, would you? I would appreciate it.
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