I think this surgery is finally going to kill me

oh my gosh, first I don't think this was caused by the DS, I think this was caused by what your original surgeon did to you, and who knows what he did to you.  you need desperate help...

I had my revision to DS with a bmi of 39 with a lot less weight to lose than 100 lbs, so that statement is false, the DS can be tailor made, and has been used on people to GAIN weight with poorly performed surgeries that were revised to DS

 this is what I would do TOMORROW am. Call Ara Keshishian MD 818-812-7222, he is very skilled revision surgeon if anyone can fix you he can, he is very compassionate Dr.  I understand about not wanting a revision, very well, but you at least need to know what is going on, Dr K will tell you, and he will be very direct and upfront about your case, and if anyone can fix the mess you have and he thinks it is in your best interest he can.

Get all your operative reports, dr's notes, hospital records etc, they are your records and your right to have them.

Get to a good endocrinologist that understands the nutritional needs of short guts, you really cant have 60% of your small bowel bypassed and not take some significant vit/mins like all DSers have to, no one should have deficiencies like this in 2014.  you say you are taking vit/min but have you been taking since you were diagnosed with malnutrition in 2007 and your protein levels how are they?  You may need to be hospitalized for a while to fix all the issues.

I know you say you wished you didn't have the DS, but I think you mean you wished this mess didn't happen, everyone would, but again i don't think it was the DS but your crappy surgeon, and umm I would blame him.  and by all means you are only 64, you have an average of 20 years to live, please let us know how you are doing, I will be praying for you.

So sorry to hear of your health problems.

It doesn't sound like you or your wife got a true DS.  The small intestine in a DS is rearranged - none is

removed, unless it becomes necrotic (tissue death).  That could happen if the blood supply was

destroyed, and if I remember correctly, that is one of the risks of the surgery.  Nevertheless, it sounds

like this doctor did a real hack job on you, and there was no educational component whatsoever

regarding nutrition post-op.  With the DS, calorie counting in terms of restriction goes out the window,

in favor of counting protein grams.  I even had to take Creon, a digestive enzyme, for a while, to make

sure I was getting enough nutrition early out.

Most bariatric centers where the DS is offered have a pre-op education process that one goes through to

learn about how the procedure is done, how it works, and how to nourish yourself, including taking ultra

high doses of vitamins and minerals, and getting enough protein in for the rest of your life.  Those

programs have often been designated as Bariatric Centers of Excellence,  and, as I had my DS through

Medicare, since it was part of my disability, it was stipulated that the surgery be done at a Center of

Excellence.

The DS, no doubt, was very new to the US when you had yours, and with only 75 surgeons in the world

currently performing the DS (when I had mine, the number was 50), I can imagine there were probably

fewer than 5 vetted surgeons in the US, if that many.

I know it's a long way to travel, but I would certainly take the advice of consulting with Dr Keshishian

for revision.  I've heard very good things about him.

In the meantime, Vitalady not only has a DS vitamin package, she also has one for those who struggle

with deficiencies.  It's pricey, especially for we senior citizens, but at this point, it's all about correcting

deficiencies and living.  Check out eBay for a 5 pound box of unflavored whey protein isolate.  You can

get  plain cocoa or flavor extracts from the supermarket to make them any flavor you like.  Eggs are

also chock-full of protein.

I wish I could make things better for you right now, so you wouldn't continue to go through this! 

It makes me very sad to read that a doctor would mislead you like that.

I hope everything works out for you and your wife.   

Neither bariatric centers that do the DS, nor Centers of Excellence, have a darn thing to do with their post-op nutritional or education programs! Great centers, even CoE, often (usually) don't know squat about post-op eating or supplementation!

Mary_J -

I agree with you regarding post-op nutrition and education programs. In defense of my own CoE, they did at least have a list of vites that got you started right. The further out you are, the more stuff becomes depleted, if it were intantaneous, noe of us would make it past the first three months.   I'm done with my 5 years long, every 6 month follow so it will be up to my PCP and Hemo from here on in, and I was blessed with two that allowed me to educate them.  Both have seen extreme malnutrition up close and personal, as they are from countries where famine was the norm rather than the exception.  In fact, that is what drove their desire to become doctors.

I'm blessed to have two that will listen to me, and allowed me to educate them about the DS.  My PCP, who also teaches medical school, has even had her students come in when I happened to have an appointment with her, and asked me to explain the DS to them, with my permission, of course.

Here's a tip on how to get some docs who have no clue to get a little bit of one, at least.  Just say "short gut syndrome".  The nutritional issues are nearly identical to the DS.  Once the light bulb goes off, it's usually a little easier.

Lots of good advise already given so I am just going to say a BIG PRAYER FOR YOU! HUGS!

I am SO sorry you're going through this! Like others, I suspect that Dr. Heap did NOT give you a true DS, and he most certainly did NOT give you adequate post-op instructions on how to care for yourself. While the DS has the very best long-term results, it can also have the very WORSE problems with malnutrition, if the patient doesn't know how to properly eat/supplement/test.

I know nothing about your Dr. Lee Trotter, and since I've been deeply involved in the DS community for 11 years now, that makes me think he's NOT the best guy to be advising you. I strongly urge you to contact Dr. Ara Keshishian IMMEDIATELY. He's the penultimate go-to surgeon for complicated, one-off problems---WORLD-WIDE.

My BMI is 21.9. I checked my weight on the doctors scaled today and I have lost 3 lbs. in 10 days. I am at 140 now.

I am not sure how you accurately calculate your BMI without your legs, but your doc is unknown in the DS community. Dr Rabkin or Dr Keshishian are the 2 most wonderful and talent ly DS surgeons in California. Dr Rabkin fixed my messed up surgery. Get a hold of one or both and pack your bags before things get worse. 

In in the meantime stop counting calories and eat protein. You want at least 100 grams a day if not more. Do not eat any carbs while you are getting into one of the docs. Sorry you have been thru so much, but you need a DS pro doc and you need him now. I would suggest as long as you are going to have your wife see him as well for evaluation and see what's happening with her as well. 

Lots of of great advice . Please post an update once you see a True DS doc.

I figure my BMI because my prosthetics weigh about the same as normal legs and feet and I weigh with them on.

Thank you for that clarification.