Dear Family and Friends

[DianaCox]

We often have pre-ops and recent post-ops mention that their family and friends are very concerned to hear that they are following nutritional and other advice from "people on the internet" rather than what their surgeon and their nutritionists are telling them. That is understandable - but let me explain why listening to US is the right thing to do.

• Surgeons are the mechanics of the medical world, not nutritional biochemists
  • Surgeons generally (and I'm sure @Larra can comment further) do not have an ongoing relationship with their patients, and most of their interactions with their patients occur in a single pre-op appointment, while the patient is unconscious, and a single follow up appointment - "one and done," more or less.
  • Surgeons have a certain skill set, which rarely includes nutrition.
  • The VAST majority of bariatric surgery practices are geared towards surgeries other than the DS, and the VAST majority of nutritional advice given to DS patients in these practices is slanted towards (usually inadequate even for them) RNY advice, which is VERY VERY BAD for DSers.
    • This cannot be overstated - RNY advice is WRONG WRONG WRONG for DSers!
    • We have far more malabsorption, including selective fat malabsorption, and we have a pyloric valve - these make all the difference in our nutritional needs.
• There is a solid core of scientists and medically-trained people among the DS vets who DO know better than the surgeons and their staff:
  • There are PhD scientists (I'm a PhD medical biochemist/molecular biologist), MDs (including a surgeon, PCP, and DO just to mention people I know and have met), a nutritionist whose focus is on bariatric patients, including DSers, and many others who are practicing scientists, nurses and allied health professionals.
  • We have learned over time and by tracking our labs and our gut issues that the advice given by the doctors and their staff is essentially WHOLLY inadequate:
    • Doctors who sell their own vitamins - need I say more??
    • They don't understand the necessity for "dry" or water-miscible fat soluble vitamins D3 (not D2), K1 and K2 (most don't even know there are two different vitamin Ks which have different biological effects), vitamin A (most don't know the difference between beta-carotene and retinol esters), and vitamin E (the vast majority of us NEVER need to supplement this).
    • They don't understand that commercial products such as ADEKs are WORTHLESS to us - they don't contain enough of the vitamins to start with, contain E which we don't need, and contain the wrong balance of the others - we need to take them individually, based on our OWN labs. (I didn't take ANY of them for years; I didn't need D3 supplementation until I was 5 years out; K until I was 6 years out and A until I was 12 years out.)
    • They prescribe forms of iron which we can't absorb or which tear up our guts, and don't (refuse to) understand that we need infusions at ferritin levels that are in the low normal range, not after it falls below that, because we CAN'T get them up when you wait that long (there is a medical explanation for this, that most of them don't understand, and even many hematologists, sadly, don't get either).
    • They recommend low fat diets - I can't EVEN begin to say how wrong this is.
    • They often don't recommend enough protein, or recommend the wrong type.
    • They push supplements in the beginning which are wrong and/or unreasonable:
      • Getting in 90 g of protein from the beginning is unnecessary and unreasonable - we have found an easy path to getting up to speed is the 30-60-90 rule: 30 g/day of protein by 30 days out, 60 g by 60 days, 90 by 90 - this avoids food aversions from developing from trying to cram unnecessarily large amounts down a tender and healing gut.
      • Ditto the supplements - we have lots of reserves in our fat bodies. Getting huge calcium pills down in the first few weeks is torturous and unnecessary - wait until your guts heal, start small, but try to be up to your full STARTER regimen by 3 months out.
    • They refuse to understand that many if not most of us will get occasional bouts of SIBO, which is easily treated with metronidizole, which many of them mistakenly believe is carcinogenic or otherwise bad - that was debunked years ago, but they don't keep up with medical literature once they "learn" something is true.
      • SIBO can make you miserable, and is the cause of many of the bad side effects (smell and diarrhea) that are the reason that so many misconceptions (AKA LIES) about the DS are thought to be true, and is used as one of the main excuses to recommend against the DS.
  • The surgeons often set goals, expectations and regimens based on trying to force you to make THEM and their "data" look good - they are unnecessarily harsh and inappropriate, and thus impossible to stick to and engender feelings of failure and futility in the patient.
    • Our experience has shown that this is unnecessary, so SCREW the surgeons and their ridiculous expectations.
    • Most of the surgeons ARE FATTY-HATERS deep down, actively try to make their patients feel badly about themselves, and berate their own patients when they see them at follow up appointments - resulting in perpetuating the patients' low self-esteem and makes them want to give up trying.
    • NO, JUST NO!

So, in summary, YES, WE DO KNOW BETTER. Over the years, through sharing our experiences, we have arrived at something of a consensus about the care and feeding of a DS, which differs greatly from the very very wrong advice that the surgeons' practices try to force on their patients.

We also know that we are all individuals, who have received DIFFERENT versions of the DS (limb lengths vary), with our own individual metabolic issues, as well as individual ages, genders, underlying medical conditions, level of activity and lifestyles. Not only that, but each individual changes over time, and so you MUST stay on top of everything and change as necessary. The advice can and MUST be individualized. There is no one-size-fits-all advice for DSers - just advice that is used on a trial and error basis, by monitoring labs and how you feel.

Finally, we vets are the ones who have a vested interest in making sure we stay healthy over time, and we are the ones who are tracking and sharing the results we have discovered works better than what our doctors are - without evidentiary basis - trying to slough off on us. WE are living with this surgery, and WE know that the doctors are wrong. And we know that we have "saved" many people from the brink of death, reoperation and weight regain, by sharing what we know.

Yes, it would be nice if there was research and clinical data supporting our anecdotal evidence of what is right. I am actively trying to encourage such studies to be done, but the incentive is not there. In fact, there was a study a few years ago in Scandinavia comparing RNY to DS, and the DSers did poorly in comparison - at least two of the better DS surgeons (Roslin and Marceau, who give better than usual post-op nutritional advice) wrote scathing (but polite) comments on the paper criticizing that the DS patients were given RNY nutritional advice, which of course was WHOLLY inadequate for them.

So, family and friends, don't be afraid that your DSer loved one is out of their mind in that they are following the advice of "strangers on the internet" - in fact, they are fortunate to have found this core group of DS veterans who continue to "Pay It Forward" by sharing their knowledge and encouraging others to share their experiences, so we can all have the best chance of using this second chance at a wonderful life to maintain our health and happiness.

(And yes, it sucks for YOU that you can't eat like we do! Fat is our friend! Bacon is health food! Everything is better with butter!)

I hope other DS vets will post their thoughts on this letter as well.

 

[robs477]

One of the best posts Ive ever read anywhere. I saved it and am showing my family members also that sometimes blindly trust in what Dr's always say. I read the post several times and each time got some more good info and advice out of it that I will always try to continue to practice by doing my very small part by "paying it forward" as well. We all DO have an obligation to help others as others have so helped us!!

 

[k9ophile]

This is also good reading for the recently post-ops who still think their surgeon knows best. Even my surgeon said he wished all his DS patients had PCPs like mine. His major flaw was not admitting that his patients were getting crummy advice from him, so he stopped doing the DS rather than improving his post-op regimen for DS patients.

Diana is right about surgeons and many PCPs being woefully under educated when it comes to nutrition. My PCP is board certified in nutrition and has researched the DS to be better informed. He threw a hissy when he saw the amount of vitamin D I was taking. I just said OK. Then I followed the advice I learned form "strangers on the Internet". You absolutely must take charge of your education and come up with a plan that works for you. I guarantee that Diana's vitamin regimen, while sharing similarities, is not exactly the same as mine.

 

[jojo99]

This is fantastic. Thank you so much. Vets - please feel feel free to add your stories and advice.

 

[Pacifica]

Great post. Thanks for taking the time to share all of this.

 

[hilary1617]

Diana, thanks so much for posting. You are right. The vets are the subject matter experts on post surgical nutrition and supplementation.

 

[McP is me]

Diana, as usual you hit he nail on the head. I believe that the best thing a person can do is to research as much as possible about everything connected to the ds. I think alot of people's problems stem from reading some article about wls and then just charging forward with the attitude of "I'll learn as I go". This is not one of those things you can do this with. With knowledge comes power and with that you and only you can decide the best course of treatment. The people here are vets of all the battles.

 

[DSRIGGS]

Definitely good stuff, Diana.