Major Complications Nausea/Vomiting/pellagra/scurvy/Vit B12, d, and k deficiency and...

I am seeing dr Mehran at UCLA for the first time next week.  I had open gastric bypass roux en y 5 1/2 years ago from a different surgeon office that gave up on me 10 months post op.  I have had nausea vomiting, abdominable pain mostly upper left quadrant.  I have to medication daily for nausea promethazine and zofran.  I have developed some severe vitamin deficiencies and that is why i am going to UCLA as nothing has been seen in many tests over years from CT with and without contrast, nuclear studies, endoscopies, colonosopies, to upper GI with small bowel follow through.  I did have feed tube placement 11 months post op due to severe malnutrition and losing 60 percent of muscle mass.  I have for the last two years have had C deficiency very low classified as scurvy, september last year niacin very low clinically pellegra, may this year has come back none existed, C was 0.0 D finally 33 but that has only gone up less than 10 from sept when i had been Vit D3 of 10,000 IU daily, sept increased to 100,000 IU daily and still not gain, B12 defciency, and K deficiency.  Nutrtionist locally thinks may be best to have all supplments intravenous or intramuscular.  slightly anemic but not enough yet for iron transfusion. 

On ton of supplments all in correct forms and levels still fall or barely rise.

Not many I know that have the deficiencies I have and still gain 150 pounds in 2 years. 
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clinical diagnosis of scurvy, pellegra, anemia, b12 deficiency, d deficiency and k deficiency, phosphate deficiecy, lymphedema, lipodema, insomnia with rem disorder, migraine, irisitis, ect.

want to know if others had surgery also have severe deficiencies despite supplmentatio in high doses and not much help?

I sure hope they can help you at UCLA. I am sorry you have gone through all of this. I wish you the best.

I hope that the people at UCLA are able to help you. I would also recommend that you contact Vitalady, as she is very knowledgable about vitamin and supplement issues. Yes, she is selling stuff on her website, but she is also very generous with her time andknowledge and has helped many people with both RNY and DS.
     Nutritional issues are not emphasized in medical training and many doctors know little about this area that is so important for us.

Larra

My goodness, you've really gone through it.  Yes, there is a small percent of people who go through these problems...Many you don't hear of, because of confidentiallity (HIPPAA).  I'll give you my take (for what it's worth).  Hearing my surgeon talk, when I was about to get my RNY (2006), he spoke of finding "the sweet spot".  Surgeons were still flying blind on how much small intestine to remove.  They were pretty much coming to an agreement on the length (proximal or distal)...depending on the patient and the amount of weight that needed to be lost.  The more removed...the more malabsorption.  You may need to go into the hospital for IVs and more testing.  To reattach the stomach will not help very much with the malabsorption...The absorption goes through the small and large intestine.  Pureeing foods that have the color of the rainbow wouldn't hurt...Different colored vegetables.  A couple of strange ones for me...I will eat chicken corn dogs and shrimp.  No, the chicken corn dog is not good for me...but eating all those "throw away" organs may help with what I may be lacking...the same with shrimp.  I nibble on a B-Complex pill throughout the day.  To some that sounds insane...While they drink their Rockstar...  Let us know how it goes.  Brian

Yes, I would try to contact Vitalady too. You can call her office to speak to her staff too and see if she is there or probably be able to reach her by email.  Yes, I do also buy products from her too, even though I personally share the other products I've use with the members of my post op groups.  I had a question many months ago about a supplement all RNY post ops must use. I asked the same question of vitalady and my surgeon, and I got the same answer from both.  Defiencies in some post ops are more than others. DAVE

I have spoken with Michelle at VitaLady many a time.  She is still currently on tour but busy.
She helped late last year on the baseline in supplements to take including some normally not for those after gastric bypass because i even shared the current labs i had at the time.  I hvae many deficiencies that are not normally seen after roux en y and especially the amounts i take.  Spoken with many experts in different vitamins from D specialist to vitamin k specialist in europe to linus pauding institute at oregon state micro nutrients department ect.

It is just frustrating that having seen different specialists over the 5 1/2 years and them not really finding anything is frustrating.  The original surgeon office that did my roux en y gave up on me 9 months post op because I did fit the success they wanted and them saying it had to be reversed was only option I did not feel comfortable with that had second opinion at bariatric department at stanford and after the tests they ran still could not see anything but said reversal would cause more harm ad not reccomended.  And the bariatric doctor before stanford who placed the feed tube still could not believe i was still having lots of trouble with feeding and getting sick but the home hospital i had worked with me and still many many hopitalizations for not being able to keep anything down and changing the formula many times finally helped with a small pump i could slowly use to rate the feeding which took 20 hours to complete helped and it was portable. Then standord and then gave up for awhile and then starting getting sick again and gastroenterologist locally last year in sept and he was still perplexed. 

So now the appointment at UCLA will hopefully help and the specialist at stanford on yues i saw with his suspicition I think things can move on from here.  Stillpossible port placement which is what is looking at until the cause of malabsorbtion found may be helpful so i dont have still lower nutrients and get worse.

The amount I take in supplments is much more than the average gastric bypass patient  because of the atypical presentation I have and jut being a complete mystery.  And if UCLA is not able to help much there is a good chance I will be sent to the NIH in Maryland to the undiagnosed clinic they which has 30+ specialists that all work together collabertly to try to see what can be going on and they only take about 400 patients a year and sometimes will see others like me.

I am not expecting the aha its this and then this help I know that is not realistic but some answers would be good.  Maybe when I know more I then let others know if someone may having difficulties too for the rarer cases that seem to defy logic but a web of symptoms can be looked at in another light with fresh eyes or spoken with thier doctors asking on the sunject to explore in thier quest and mystery.

Sorry for being long winded, just researching trying to understand look outside the box because the obvious had been ruled out.

Want to thanks for words of encouragement and when i know more i can share more o my experience.

I know I am that less than 1% with complications like mine.

Here is current list of meds and supplements:

Ambien CR 12.5 mg QHS
Promethazine 50 mg Q6-8 Nausea med
Zofran ODT 8 mg Q8 Nausea Med 
Calcium Citrate 1000 mg QD
Multi-vitamin/Mineral QD
Vitamin D3 50,000 IU TID
Niacin (B3) 500 mg TID (upped amount in May 2010 was on 250 mg BID)
Vitamin B12 1000mcg sublingual BID  (B12 just recently switcheed to bimonthly injections) 
B Complex BID
Vitamin C 8000mg QD (upped from 5000 mg QD May 2010 this is taken in powder form)
Vitamin A 30,000 IU QD
Vitamin E 400 IU QD
Vitamin K 1000 mg QD
Vitamin B Complex QD
Zinc 50 mg QD
Copper 400 mg QD
Magnesium Citrate 140 mg QD
Tylenol PRN
Oxygen set at 2 Liters at Night (not apnea) but REM disorder from comprehensive sleep study September 2009
Gas X PRN
Midrin PRN

QD= daily
BID= two times daily
TID=three times daily
Q(number)=is amount taken on so many hours inbetween doses
QHS=taken at night
PRN=taken as needed

Update :
Saw Dr Mehran at UCLA Bariatric Metabolic Department Today.  Bit perplexing as I was able to gather digally all image studies done from 08/09.  2001 was 3 years before my gastric bypass surgery thinking maybe a clue to all the malabsorbtive issues couldbe possibly seen by going back that far to the current along the way and had reports for everything as well.  Did not even look at digitized images or keep to further evaluate.  He also seemed confused and not really sure.  Referred me a gastroenterolist at UCLA, Endocrinologist, and Rheumatologist stating that my issues would be best seen by gastroentereologist.  Just still scrating my head, not seeing too much logic here.  Also had copies of all my labs from Jan 09 to current may 2010.  Nope did not really need to see past ones, but felt it may be helpful to really see how deficiencies have continued to drop despite taking the correct supplements especially in high doses even those that have not yet fallen to deficiency stage.  He knows nothing of LE which is basically lymphedema of intestine, or follow up on possible clue from Dr Rockson Stanford Medical Center whom specializes in lymphedema suggested possible protein losing enteropathy which is a stool test called an Stool Alpha 1 Antitrypsin esp since bowels not regualr anyways.

But did second confirmation thatr reversal would make things worse, other time told me was in 2005.

It is just frustrating that I severe deficiencies despite by albumin levels normal.  Feeling sick all the time, tired, frustrated from the date my surgery to current that has been found as of yet with many imaging studies, high dose supplements, vitamins crap levels, endoscopies done but unremarkable but not low enough in small intestine to really see what is going on, suggested many a time to try camera endoscopy but told no may not work since not all stomach seen, no do not think will help ect.

I am also tired but will go see the other specialist see what other tests need to be done and go forth from there.  Baby steps one a time, never any absolutes, and realize may never know what is going on but will continue to exhaust all avenues first.

Has anyone ever given you an IV access port and given you the deficient vitamins and minerals IV, such as by infusion over a couple of hours every day. Niacin you can't because it causes vasodilation and hypotension I think.  But it seems most of the other things could be given that way.  It's not a long term solution, but it would still be interesting to see if a lot of your clinical signs wouldn't go away.

It has ben thought of but still is last resort measure.  I saw the doctor at ucla and will take flagyl for 2 weeks and add probiotics to the already long list of supplments, will have ct with and without contrast, camera endoscopay and regular endoscopy going to end of small intestine and colonoscopy, stool tests some specialized, will also endocrinologist, and rheumatoologist to rule out endocrine system and rhuematologist to rule out autoimmune response and there may even be a dermatologist too to see if he can come up with other ideas to link things together and see if rash is from niacin deficiency manefesting self as pellegra like rash.  Als may be more blood work,  will know dates by next week with referrals.

appointments in the next 6 weeks with specialists at ucla first one aug 30, sept 28, and oct 4.  just had another ct with and without contrast results shoyld have by mid week.  still getting sick still tired still trying to trudge on but doing it one day at time.

just to let all know this is not the norm after gastricx bypass and i am that less than 1 percent with complications like this