ds revision/reversal for malnutrition?

I don't know exactly what form of malnutrition we're talking about here, or how severe it is, but it doesn't sound like everything short of surgery has been tried yet. Have you been on digestive enzymes? They would lessen or take away your malabsorption to allow for either short term or permanent absorption of proteins and whatever else you may be missing. Have you been on nutritional supplements? I don't mean just the stuff you can buy off the shelf, but the kind a doctor could prescribe.

If these fail, have you tried TPN (total parenteral nutrition) or PPN (partial parenteral nutrition)? These are methods where nutrients are provided intravenously, which means they would be well absorbed. They can be administered at home once you are taught how to do it, and while not fun, could save you from an unwanted major surgery.

If worst really does come to worst, one of the great features of the DS is that it can be revised by lengthening the common channel without a complete reversal of the "switch" portion of the operation. So there are several alternatives here that need to be explored before you sign up for surgery.

Larra

You didn't mention being tested for any nutritional issues or even mention your regimen of vits. I would do that ASAP if you want better help. If you do not have a history of significant labs drawn and a very skimpy vitamin regimen, then there is no wonder your suffering. Knowing this is VERY important! Also like the other posters have mentioned, revision should be last option. From your vague post it sounds like you haven't tried much for intervention. Please please list your labs and vits best of luck

i am following a rigid vitamin schedule as prescribed by my bari dr, i have added enzymes 2 with every meal, as well as a protein shake 22grms per day, i have added iron 3x daily requested by my hematologist. next week i am getting a complete vitamin blood draw which should show where i am currently. i have scheduled another appt with my bari dr. in 2 weeks, i will request a dietitian or nutritionist to help me maybe adjust my vitamin schedule. i may be over reacting, but the gastro dr. scared the crap out of me by suggesting surgery. i want to give it my all and will do whatever they ask of me to avoid surgery. i just wondered if anyone has gone into malnutrition and ate their way back to health either by more vitamins, supplements etc. yes, surgery is a last resort ... thank you all for your feedback. it is so nice to know there is a community out here willing to share experiences and advice!

good glad to hear you have labs drawn and a good vitamin regimen. can you post them:) we will be able to get a better idea of how to give you advice

ty valerie (great name by the way, my second daughter is valerie :). will keep you updated. 2ow, you are all soooo wonderful..i just cant believe i stumbled on to this site....i am feeling a load of hope inside! :)

 

How often have you followed up?  You should never have gotten this bad with proper follow up.  Don't be surprised if a dietician doesn't understand how the DS works.  When it comes to dietary needs, we get more from each other, I'm afraid.  You'll need to get bloodwork every few months to see how your changes are engaging.

yearly visits and blood vitamin tests. i thank god for this site! wow you are all so kind and supportive...it means a bunch! ty

I get follow ups every 6 months.  if something's off, it gets caught before it can *really* tank.  It's not cheap, and insurance doesn't cover everything, but as they say...I signed up for this...

I'm glad you are working on getting this under control, but frankly, it is very unlikely that a nutritionist or dietician will be helpful. They just don't know what the DS involves. At BEST, they MIGHT know something about gastric bypass, if they work in the area of bariatric surgery. But even the nutritionists who work for and with bariatric surgeons give terrible advice to DS'ers, advice geared to gastric bypass, and if/when you try to educate them, they are usually resistant to your attempts.

Your best bet is to contact Vitalady and start on your own to catch up with your deficiencies. The amount of D you are taking is victualy useless for anyone with the DS, not to mention probably in the wrong form for any absorption. We need the "dry" D, A, and K. Is your calcium calcium citrate? If you are using calcium carbonate, it won't help you. Are you taking those enzymes with every meal? People with pancreatic insufficiency, for example, take 3 Creon or Viokase before every meal (and yes, timing matters). How about protein? Not a vitamin, but if your protein levels are low, nothing else will improve until you get the protein where it belongs.

And that's just from a quick glance at your vitamins, without knowing your labs. I don't care what doctor gave you this advice, it is insufficient for anyone with the DS, and unless you begin taking the right vitamins in the right forms and the right amounts (probably extra to catch up), you will be headed for the surgery that you don't want, and what, with proper supplementation, would probably not be needed.

Larra

A dietician or nutritionist will not help you. They, like your docs, do not understand the malabsorption of the DS. Talk to VitaLady and MajorMom and find out what you need to be doing to get yourself sorted out.

My vites:

A 50,000 bid (twice a day)

E 400 bid

multi (Centrum) bid

zinc 50 bid

Calcium 1260  mgs (two pills) six times a day, each dose separated by at least 90 minutes and taken with Magnesium Citrate 200 mgs and Dry D four of those doses

B-12 3 times a week

B-50 every other week

Copper 2mgs once a day

Potassium 99mgs six times a day plus I use Nu-Salt (salt substitute which is potassium)

Also:

K-1 1000 bid

K-2 50 once a day

Vitamin C 1000 once a day

This is what keeps my labs OK.  My D is not where I would like it (over 80) but it isn't terrible (in the low 50s)

My doctors (family practice and endocrinologist) are CLUELESS.  If I ever have a question about my labs I talk to the folks here, on the other DS site or I would phone VitaLady.

PS I am one of the very few people who do not need (at this time) to supplement iron.

Also I know of people who have taken up to 6 protein shakes a day to keep their protein up.

Hope this helps you take charge of your health.

~Becky