Kwashiorkor

 
I know...I'm already worried and getting more worried.  My fault.  Should have stayed on top of things more.  just because I felt great and strong doesn't mean i could ignore the rules.

Since I haven't seen the surgeon in ages...I think the first step will be to see him.  Or a nutritionalist specializing in DS patients.  I agree..a lot of doctors know very little about things.

No one ever mentioned that I need to consume that much protein.  Others  have recommended shakes.  Do most take shakes?

They told me the CT scan reflected early stages of fatty liver disease.  They checked into it due to elevated liver enzymes.

I was thinking it was because I was eating most anything...fried food, gravy, sauces, chips...etc.  Butter, mayo...all that kind of thing.  Little whole grains.  I did eat my share of lean meat too though.

The surgeon was Marek Lutryzkowski, Bloomfield Hills, MI

I don't remember common channel length now...I do remember he took...if I remember correctly 16-18" out of me.  

Thanks for all your advice, insight and help with this....
Cheryl

I don't remember common channel length now...I do remember he took...if I remember correctly 16-18" out of me. 


 Cheryl- 
No small intestine is removed with the DS.. It is simply rerouted.

I suppose I should him and/or a nutritionalist specializing in bypass surgery.

Why would you see a nutritionist specializing in bypass surgery when you have a duodenal switch? You're just going to get more wrong information that way. Dietitians/nutritionists just can't wrap their brains around the dietary requirements for DSer's. We should all thank G-d for each other on this board..it's the only way many of us would be able to stay halfway healthy! If not for the DS vets on this board, I would have been a nutritional trainwreck long ago. I'm dealing with some nutritional issues now that are purely my fault; the six months watching my Mom decline and die made me a little sloppy about taking care of myself.

I've got A, D, iron, calcium and protein issues this set of labs. I officially have osteopenia per my bone scan done earlier this year. I have been throwing all kinds of cal-mag-D supplememnts in, to try to get my parathyroids to go back to sleep! Of course I had calcium issues out of the gate, so that's been a constant battle.

For you, get back on your protein shakes, and never let them go! I decreased my intake from 4 a day to erratic consumption, and I'm in nutritional trouble. Not quite PPN or TPN, but I could be if it gets any worse! It's very easy for us to go from low normal to crisis once we get to the low end of the "normal" lab values.

I think I read that you had a 65cm common channel...mine's 75 cm...the shortest my surgeon does. Even more reason to get back with the program. Vitalady has a regimen for those with deficiencies, and those with shorter cc's are more prone to deficiencies.. make sure you get your vites in...and see about multivitamin infusion with your iron. I'm getting iron and multi infusion on Tuesday.

 Thank you so much for your advice.  Like you...due to a number of factors...I too was not careful in taking care of myself.  I have iron, D, Calcium and protein issues...but trying to get back to where I need to be.  I get iron infusions 2-3 times per year...6 doses at a time over a period of 6 days in 2 weeks.  Next due in Sept.  What do PPN and TPN mean?  I've seen Vitalady's regimen and printed it out.

Good luck with your infusions today...

 PPN-partial parenteral nutrition
TPN-total parenteral nutrition
This is when you are partially or totally fed via a tube attached to a port in your abdomen.

 Not a fun thing. Your meals come in the form of a liquid nutrition formula in a plastic bag, similar to an IV bag.

 I'm agreeing protein malnutrition.  You need to eat 100g of protein daily - and fat is a free food for us, and makes it much easier to get the protein down, too.

Hi Valerie...

Thanks for responding...

I'm guessing I eat 90g protein per day....will eat more.

Hoping to get to the bottom of this and I'm going to get protein levels checked most accurately for sure.

I would like to know your symptoms.

Hi Kayla,

I've lost additional weight after being steady for a while.  130 # for me is skinny.  I'm 5'6" tall.

Swollen ankles and legs...humid here so that is part of it.

Tired all the time...but low iron is part of it.

Bloated abdomen..I'm skinny everywhere except tummy

Diarrhia...though that has improved since I'be been eating more gains, cereal, salad and veggies

My main concern here is that this symptoms are also symptoms of pretty bad liver disease.  Kinda like which came first--you know?

How much protein do you eat?  How high are your liver enzymes?