Malabsorption after 7 years....
Good evening. I wanted to see if anyone out there has had a similiar situation and how they were able to correct it.
A lil history...I am 7 years post-op from my R-N-Y. I started with a BMI of 52....and after approx 18 months settled around a BMI of 32-33.
Several months back, without changing anything....no change in my diet, my level of exercise, or my vitamin regime (multivitamin and monthly b-12 injections)...I awoke to find myself severely depleted of my energy level....and then had my first ever outbreak of singles....which has been followed by numerous outbreaks. At the same time, the scale started to move downward. Today my BMI is 22. I've been poked, scoped, and have told my story again and again.
Bad news....I'm running into the usual negative predjudice against WLS and have actually had more than one MD tell me..."hey...no wonder you don't feel good...no wonder you're losing weight...you're the one that had weight loss surgery....you need to eat healthier.
I've tried to explain that my R-N-Y was 7 years ago...and I haven't changed anything.
Good news is that the scope didn't show anything scary....and no strictures. After all these years my pouch is still the size of an egg.
I've also found an MD who specializes in bariatrics....she is not a surgeon...and prefers nutritional and homeopathic means....but is not opposed if someone has tried those without success....then she refer's to a bariatric surgeon.
My recent lab showed that in spite of doing injections of B-6....my level of B-6 was undetectable....of course the others (B-12....and Vit D) were low.
Now, they want to place a central line and give me hyperal. I guess, now that I've typed it all out...I realize that my real question is: Has anyone had this happen so far out post-op? And was it corrected with the hyperal.
Thank you if ya made it this far thru my post....
And yes, I've spoken with my original WLS surgeon...whom I trust very much....but happen to be 800 miles away from....and he believes I need the port placed.
I had one MD suggest that I consider seeing someone to discuss undoing the R-N-Y...well, buster...that's NOT an option for me....not unless you tell me I'll die otherwise. Without the R-N-Y, I would have probably already been dead....and I would do it again tomorrow if I needed it.
I continue to advocate for WLS and believe it to be a true life-saver. We all know there are potential complications from it....but they don't compare to the complications - physically and mentally of being morbidly obese.
Thanks again,
Gina
RNY 12/11/01 wt. 320
Now 140#
A lil history...I am 7 years post-op from my R-N-Y. I started with a BMI of 52....and after approx 18 months settled around a BMI of 32-33.
Several months back, without changing anything....no change in my diet, my level of exercise, or my vitamin regime (multivitamin and monthly b-12 injections)...I awoke to find myself severely depleted of my energy level....and then had my first ever outbreak of singles....which has been followed by numerous outbreaks. At the same time, the scale started to move downward. Today my BMI is 22. I've been poked, scoped, and have told my story again and again.
Bad news....I'm running into the usual negative predjudice against WLS and have actually had more than one MD tell me..."hey...no wonder you don't feel good...no wonder you're losing weight...you're the one that had weight loss surgery....you need to eat healthier.
I've tried to explain that my R-N-Y was 7 years ago...and I haven't changed anything.
Good news is that the scope didn't show anything scary....and no strictures. After all these years my pouch is still the size of an egg.
I've also found an MD who specializes in bariatrics....she is not a surgeon...and prefers nutritional and homeopathic means....but is not opposed if someone has tried those without success....then she refer's to a bariatric surgeon.
My recent lab showed that in spite of doing injections of B-6....my level of B-6 was undetectable....of course the others (B-12....and Vit D) were low.
Now, they want to place a central line and give me hyperal. I guess, now that I've typed it all out...I realize that my real question is: Has anyone had this happen so far out post-op? And was it corrected with the hyperal.
Thank you if ya made it this far thru my post....
And yes, I've spoken with my original WLS surgeon...whom I trust very much....but happen to be 800 miles away from....and he believes I need the port placed.
I had one MD suggest that I consider seeing someone to discuss undoing the R-N-Y...well, buster...that's NOT an option for me....not unless you tell me I'll die otherwise. Without the R-N-Y, I would have probably already been dead....and I would do it again tomorrow if I needed it.
I continue to advocate for WLS and believe it to be a true life-saver. We all know there are potential complications from it....but they don't compare to the complications - physically and mentally of being morbidly obese.
Thanks again,
Gina
RNY 12/11/01 wt. 320
Now 140#
Oh my Gina! What an awful trial you're going through! There's nothing worse than being able to get an accurate diagnosis. Unfortunately, it happens often in our community.
My first concern from what you wrote is your supplements. If all you've been taking is a multi and B12, you could be severely deficient. Many people have shared stories where deficiencies manifested themselves in strange ways. They're also very hard to diagnose.
I hope they determine what is causing this soon. Please share your progress with us.
Michele
My first concern from what you wrote is your supplements. If all you've been taking is a multi and B12, you could be severely deficient. Many people have shared stories where deficiencies manifested themselves in strange ways. They're also very hard to diagnose.
I hope they determine what is causing this soon. Please share your progress with us.
Michele
Michele,
Thank you for your response and your concern.
For a more complete look at what actual supplements I've been using over the years...please see my reply to Tami below.
And yep, you are so right....the defiencies surely do present themselves in strange ways....and we're not your average bears....:)
Thank you for your response and your concern.
For a more complete look at what actual supplements I've been using over the years...please see my reply to Tami below.
And yep, you are so right....the defiencies surely do present themselves in strange ways....and we're not your average bears....:)
TanyaF
on 9/26/08 2:04 pm
on 9/26/08 2:04 pm
Yeah malabsorption sucks. I am now over 5 yrs post op but have spent the last year and a half fighting it. I almost died from it near my 4 year mark. I have been severly defecient in B1 & B12. It has left me with a LOT of medical problems. I totally understand your situation. I had WLS to have a better life and I got a taste of it for a few years and it was great. I was able to do things that I never had before. Then it was all snatched away. Now I may be half the size I was but I dont have any where near the life that I had at 400 plus pounds. I hope that you find some answers and relief for your situation..good luck!!
Tanya,
Thank you so much for your understanding. Though I'm glad to hear from someone who's had a similiar problem, I'm very sorry that you've had to experience it.
Can you tell me what was done to attempt to help correct the deficiencies?
Boy, you summed it up nicely....I may be half the size....but sure don't feel it right now.
Thanks again.
TanyaF
on 9/27/08 2:05 am
on 9/27/08 2:05 am
Well I was hospitalized for about 4 months because the damage was pretty bad. I lost the use of my legs for a while and had to have extensive PT to learn to walk again. I am glad to say that I am now wheelchair free..YEAH..I just walk a little funny. The memory problems are a little trickier. I have improved some, but still lose a lot of things day to day. SO--to correct the deficiencies--I was given daily shots of B1 and B12 for about 5 months (yeah I was REALLY defecient) then tapered off to weekly and now monthly. Its been a year and a half since and I am starting to get the symptoms of low B1 again, which sucks, so I might have to up my shots again. They seem to be only lasting a couple of weeks. Along with the B's I had to take folic acid daily but am now on weekly pills. This is besides all the other daily vitamins that we should take. Which I believe others such as vitalady have a lot of info on. Hope this helps some. Good luck.
Gina, were you testing your labs every year, extensive lab testing? By doing that you can see where a problem is beginning.
Michelle (vitalady.com) has a vitamin regieme that is extensive, way more than a multi vit and b-12 shot. I wonder if you started following that regieme ,when your body is replentished, and test your labs every yr or every 6 months if you h ave to, will make a difference. Perhaps that will be the key of prevention of this problem for you in the future?
I am so thankful you are getting help finally though! Sure hope you feel better soon.
I am thinking I am on the right track with michelle's plan,** and learning from your experience and others, that we have to take our vitamin lab levels seriously. Hopefully you will help others not make the same mistake as you did....I know you've helped me!
**I take 2 multi vits, 3 calcium, 2 vit D-3, 2 vit aA,2 vit E, one b-12, 0ne b-1, one poly iron, 2 vitamin c, one B-6, one B complex (I think I remembered all of them) a day. If my labs are out of wack I add supplements as needed .
Michelle (vitalady.com) has a vitamin regieme that is extensive, way more than a multi vit and b-12 shot. I wonder if you started following that regieme ,when your body is replentished, and test your labs every yr or every 6 months if you h ave to, will make a difference. Perhaps that will be the key of prevention of this problem for you in the future?
I am so thankful you are getting help finally though! Sure hope you feel better soon.
I am thinking I am on the right track with michelle's plan,** and learning from your experience and others, that we have to take our vitamin lab levels seriously. Hopefully you will help others not make the same mistake as you did....I know you've helped me!
**I take 2 multi vits, 3 calcium, 2 vit D-3, 2 vit aA,2 vit E, one b-12, 0ne b-1, one poly iron, 2 vitamin c, one B-6, one B complex (I think I remembered all of them) a day. If my labs are out of wack I add supplements as needed .
blessings,
Tami
Remember, nothing tastes as good as THIN feels!!
http://www.marykay.com/tami
Tami,
Thank you for taking the time to read my plea for help....but, you stated:
"Hopefully you will help others not make the same mistake as you did....I know you've helped me!"
I do not believe I have made a mistake.
I have done everything my surgeon has told me to do over the last 7 years...yes, including extensive annual lab work and additional IM and sublingual vitamin supplements. Sometimes IM iron...and in 2005, IV iron. (After that infusion....my iron actually held well.)
Perhaps I should have been more clear when I stated in my original post....
Yes I have always gotten annual labs...and then labs in between if I wasn't feeling well.
I have always struggled to keep my B-12 up...and have taken monthly IM B-12....and even gone thru times where they ordered daily B-12 injections.
My vitamin regime has always included chewable complex multi-vitamins....viactiv...the sublingual drops of B-12, the injectable B-12....scoops of protein powder....and making the most of what I eat.
I have lost the intrinsic factor in my jejunum...thus the oral supplements are not being absorbed. I'm pee'ing out the water-soluble ones....whi*****ludes the B vitamin's.
So, with all of that being said, again I thank you for your post...but I feel as though it's pointing toward me as a poster child of the wrong way to survive post-op.
By profession, I am a Nurse Practitior and I have never ever under-estimated the importance or power of our post-op labs, nor the importance of getting in our nutrients.
It's not as if I've just skated along, not taken care of myself, and now boom.
All of that to actually just say....yes, I've had frequent labs and taken them seriously, yes I've taken complex supplements...and I sit here as proof that sometimes inspite of that....for whatever reason, after many years, things run off the track. I also continue to say I'd have my WLS again tomorrow if I was where I was in 2001 at 320 pounds.
Thank you for your well-wishes that I feel better soon....and I'm sorry if my reply has a negative tone to it.
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"....then I read your note and felt again...."well Gina...you weren't doing what you were supposed to, but we'll learn from your mistakes....". Mistakes? I admit I'm probably a lil (a lot?) sensitive right now.
I hope that you do not find yourself in the same situation in the future....it's frustrating to go thru the motions, do what they tell you, regain your health, and then after many years, become sick, only to have professional's look at you and tell you that they're not sure what to do...and "hey...you had to have known that WLS had risk's right?".
The important message here is that....yes, we must have prudent follow-up for the rest of our lives post-op, we must educate ourselves and follow our labs....we must be smart about what we put into our bodies ---whichever form we are using....oral, sublingual, injections....and we must be cognizant of the fact that even inspite of those efforts, we are still at risk for our digestive system to convert over into a malabsorption syndrome....at which time, no matter what we dump into our pouch...once it travels into our lower intestine, it isn't absorbed, thus our bodies can't put it to use. No blame game...just a complication of having had the R-N-Y.
Thank you for taking the time to read my plea for help....but, you stated:
"Hopefully you will help others not make the same mistake as you did....I know you've helped me!"
I do not believe I have made a mistake.
I have done everything my surgeon has told me to do over the last 7 years...yes, including extensive annual lab work and additional IM and sublingual vitamin supplements. Sometimes IM iron...and in 2005, IV iron. (After that infusion....my iron actually held well.)
Perhaps I should have been more clear when I stated in my original post....
Yes I have always gotten annual labs...and then labs in between if I wasn't feeling well.
I have always struggled to keep my B-12 up...and have taken monthly IM B-12....and even gone thru times where they ordered daily B-12 injections.
My vitamin regime has always included chewable complex multi-vitamins....viactiv...the sublingual drops of B-12, the injectable B-12....scoops of protein powder....and making the most of what I eat.
I have lost the intrinsic factor in my jejunum...thus the oral supplements are not being absorbed. I'm pee'ing out the water-soluble ones....whi*****ludes the B vitamin's.
So, with all of that being said, again I thank you for your post...but I feel as though it's pointing toward me as a poster child of the wrong way to survive post-op.
By profession, I am a Nurse Practitior and I have never ever under-estimated the importance or power of our post-op labs, nor the importance of getting in our nutrients.
It's not as if I've just skated along, not taken care of myself, and now boom.
All of that to actually just say....yes, I've had frequent labs and taken them seriously, yes I've taken complex supplements...and I sit here as proof that sometimes inspite of that....for whatever reason, after many years, things run off the track. I also continue to say I'd have my WLS again tomorrow if I was where I was in 2001 at 320 pounds.
Thank you for your well-wishes that I feel better soon....and I'm sorry if my reply has a negative tone to it.
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"....then I read your note and felt again...."well Gina...you weren't doing what you were supposed to, but we'll learn from your mistakes....". Mistakes? I admit I'm probably a lil (a lot?) sensitive right now.
I hope that you do not find yourself in the same situation in the future....it's frustrating to go thru the motions, do what they tell you, regain your health, and then after many years, become sick, only to have professional's look at you and tell you that they're not sure what to do...and "hey...you had to have known that WLS had risk's right?".
The important message here is that....yes, we must have prudent follow-up for the rest of our lives post-op, we must educate ourselves and follow our labs....we must be smart about what we put into our bodies ---whichever form we are using....oral, sublingual, injections....and we must be cognizant of the fact that even inspite of those efforts, we are still at risk for our digestive system to convert over into a malabsorption syndrome....at which time, no matter what we dump into our pouch...once it travels into our lower intestine, it isn't absorbed, thus our bodies can't put it to use. No blame game...just a complication of having had the R-N-Y.
Hi Gina, thanks for posting this. I don't have any advice for you, because I'm not that far out, but I want you to know that I appreciate you sharing your experience with us. I hope you and your docs find a solution to this syndrome soon-it must be terrifying to have this suddenly happen despite being a compliant patient. Take care, Lisa
Lisa --- Thank you for your kind words and understanding. Yes...your description of terrifying is probably pretty accurate...though I'm trying to be brave...and remember how miserable I was when I was heavy....and how hard I fought and clawed my way thru the insurance approval process back then. Back then...well, I couldn't hardly move because I weighed 320 pounds....and now, well, I can't hardly move cause my tank is on empty. :)
I keep telling myself..."hey self....you could be 320#'s and be feeling pretty rotten....so get this figured out and get back to a real life".
Good luck to you! Once I have some answers and a solution...I'll post it so that other's can know...just in case....
Like the saying..."but for the grace of God there go I".....
Gina
I keep telling myself..."hey self....you could be 320#'s and be feeling pretty rotten....so get this figured out and get back to a real life".
Good luck to you! Once I have some answers and a solution...I'll post it so that other's can know...just in case....
Like the saying..."but for the grace of God there go I".....
Gina
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