Major Complications Almost 6 years-Chronic Nausea, vomiting, pain, severe...

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?

UPDATES:

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

Post Date: 7/27/10 6:20 pm

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.

UPDATE

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

sorry forgot to uncxlude recently spoke with michessle at vitalady for update talk and even she is stumped out of her scope of knowledge but with lead to try possibly