SICK of "Cut and Pasting"!!!!!!!

[robs477]

Hmm ... maybe at least a powerpoint presentation could be drafted as a starting point, seeing as Gagner has invited me (and other vets) to speak at his First International Consensus Conference on Duodenal Switch in Montreal, June 22-23, 2015.

It would be interesting to at least get an outline going:

• Preop
  • Pick a surgery first
  • Pick a surgeon
  • Dealing with the insurance company
  • Dealing with pre-op requirements
• Peri-op
  • Prep for surgery
  • The surgical consent form and insisting on DS only
  • What to bring/expect
  • Eating/drinking/vitamins/medications for the first month
    • Solids/liquids/purees and the Valtrac ring
  • Stay off the scale! You will get home loaded with fluids
  • How to expect to feel for the first month
    • Nausea - GET PPIs!
    • Tiredness
    • Bathroom issues
      • Dealing with odor so it doesn't become an emotional issue
• Post-op: 1-3 months
  • 30-60-90 rule
  • Eating: Hi protein, medium to high fat, low carb
    • Protein supplements IF needed
  • Dealing with poop
  • Diarrhea/constipation
    • Fat is - or will soon be - your friend (and how to tell the difference)
    • Calcium/immodium to firm things up
    • Flagyl/probiotics to deal with the smell
    • If it gets really bad:
      • R/O C. diff (and a discussion of how to treat C. diff from the experts: Flagyl, vancomycin, Rifaximen [no], experimental treatments including poop transplant)
      • Tincture of opium
      • Creon?
  • Stalls
  • Staying off the scale (?)
• Post-op: months 3-24
  • Eating multiple meals/snacks vs. grazing
  • Traveling
    • Flying
    • Eating
  • Supplements/Labs
    • Dry/miscible A, D and K (E rarely needed) - ADEKs are wholly inadequate/inappropriate
    • Calcium CITRATE and issues related thereto
      • Costco's has too much B6
    • Magnesium and K2 for bone health
    • Iron (per os or infusions) - timing
    • Zinc, copper and other 2+ cations and timing issues (to avoid competition with calcium)
    • Thyroid at night, away from food
    • Multivitamins
      • Prenatals
      • Adult multis (take 2)
      • Chewables (Flintstones ...)
    • PROBIOTICS!
  • Talking to your PCP for handling most of your ongoing care
  • Symptoms of DS-related problems and how to handle going to the doctor or ER
    • Possible bowel obstruction:
      • Demanding CT with contrast
      • Explaining two GI tracts and BPL obstruction with still passing poop and gas
      • Surgical consent and expressly denying permission to take down the DS
    • Diarrhea
    • Kidney stones
      • Calcium not high enough?
      • Low-oxalate diet?
      • Blood citrate levels and how to bring them up
    • Anemia
      • Absorption/timing vs calcium
      • Preference for infusions
        • Getting infusions before ferritin gets below 30 ng/mL
    • High PTH
      • Get baseline DEXA scan
      • Somewhat normal in the beginning to lose excess bone mass (no longer needed!)
      • How to explain/argue the difference between primary and secondary hyperparathyroidism - don't let them remove your parathyroids!
  • NSAIDs: how to use
  • Exercise
  • How low should you go?
    • Adapting diet to slow the loss as you get close to "goal"
    • When to add Creon
    • Cutting carbs if weight loss is insufficient
  • Shopping, cooking and eating with your family
    • Your high fat diet and your kids - a teaching opportunity, not something to hide
    • Dealing with food in the house that YOU can't eat
• Post-op: years 2-6
  • Exercise continues
  • Bounceback regain - it happens
    • Average long term EWL is 75% - be prepared to deal with it
  • Medications that can cause regain
  • Reconstructive surgery
    • How to get insurance coverage
    • Is it worth it?
  • Long-term nutritional issues
    • Too much weight loss/malnutrition - what to do BEFORE considering revision surgery
      • Add carbs
      • Add Creon
      • Get TPN before surgery - may avoid surgery, but also to buff up before to make surgery safer
  • Staying in touch with support groups is closely associated with long-term success
    • Constant reminders of what is needed
    • Paying it forward is good for you too

OK, that's a first draft, off the top of my head - what else needs to be included?

 

[robs477]

YAAAAAAAAYYYY!!!!!

 

[Sue]

WOW is all I can say, so much wonderful information, I am overwhelmed and grateful I am part of this wonderful group!!!! I feel like when I am not on a day I miss so much information, amazing!

 

[Larra]

Did Dr. Gagner say what he would like DS patient advocates to discuss? While I think the concept of a comprehensive written book (or other format) for DS'ers and potenetial DS'ers a la what Rob suggested is great, the outline you have constructed seems excessive (to me, anyway) for this conference. Of course I could be wrong, maybe it's just what Dr. Gagner wants, but I doubt it.
You also have to consider the audience. A bunch of doctors will tune out if we overwhelm them with every possible concern a patient might have. I would rather hit the high points and cover stuff like why people get into nutritional problems post-op and what can be done to prevent this, what to do once it does happen (i.e. revision is the last resort, not the first), how to keep patients on track long term, how surgeons, as a group, could advocate for evidence based iinsurance coverage for the DS, that sort of thing. In other words, what important message do we want the audience to take away with them, what changes do we want to see for future patients? If you try to say everything you will say nothing.

 

[buffalobillsfan]

Diana,
You can't leave out my favorite "how to avoid a fissure". I laughed, I cried, I read it over and over again. In fact, I wouldn't mind a repost of that old favorite.

 

[robs477]

Did Dr. Gagner say what he would like DS patient advocates to discuss? While I think the concept of a comprehensive written book (or other format) for DS'ers and potenetial DS'ers a la what Rob suggested is great, the outline you have constructed seems excessive (to me, anyway) for this conference. Of course I could be wrong, maybe it's just what Dr. Gagner wants, but I doubt it.
You also have to consider the audience. A bunch of doctors will tune out if we overwhelm them with every possible concern a patient might have. I would rather hit the high points and cover stuff like why people get into nutritional problems post-op and what can be done to prevent this, what to do once it does happen (i.e. revision is the last resort, not the first), how to keep patients on track long term, how surgeons, as a group, could advocate for evidence based iinsurance coverage for the DS, that sort of thing. In other words, what important message do we want the audience to take away with them, what changes do we want to see for future patients? If you try to say everything you will say nothing.

Absolutely, Lara is right. This really needs almost two entirely different approaches. I’m sure Diana knows that also and she was just saying maybe it could be a “starting point”. The seminar needs to just focus on highlights or you will lose everyone quick, I should know, remember??...I’m the LOOONG winded one with the 3 page explanations on my consent forms…LOL

I’m all for anything though as long as it’s a start, a beginning, maybe something we can build on. BUT, I/we still NEED a book, even if I have to compile it myself, I’m going to make this happen!!

 

[hilary1617]

Congratulations @DianaCox on attaining the presentation opportunity! I like Larra's recommendation to framing the powerpoint around how surgeons can best help DS candidates/patients succeed, noting key pitfalls and solutions.

 

[DianaCox]

Did Dr. Gagner say what he would like DS patient advocates to discuss? While I think the concept of a comprehensive written book (or other format) for DS'ers and potenetial DS'ers a la what Rob suggested is great, the outline you have constructed seems excessive (to me, anyway) for this conference. Of course I could be wrong, maybe it's just what Dr. Gagner wants, but I doubt it.
You also have to consider the audience. A bunch of doctors will tune out if we overwhelm them with every possible concern a patient might have. I would rather hit the high points and cover stuff like why people get into nutritional problems post-op and what can be done to prevent this, what to do once it does happen (i.e. revision is the last resort, not the first), how to keep patients on track long term, how surgeons, as a group, could advocate for evidence based iinsurance coverage for the DS, that sort of thing. In other words, what important message do we want the audience to take away with them, what changes do we want to see for future patients? If you try to say everything you will say nothing.

I was aiming the outline at the book/powerpoint/website - being comprehensive. I am currently engaged in a discussion with Gagner about what he would want. I asked about the agenda and how many surgeons he expected to attend:

"Thank you for your interest. It is principally for surgeons, the agenda will include one day of live surgery (very technical) and a second day of presentations about results, outcomes, management of complications, including nutritional. This will be a small conference, about 250 participants, and we do not have a lot of industry support at the moment. It will be a consensus conference, meaning that the top surgeons in the World are invited to vote and publish a consensus statement later. There is an increasing interest Worldwide, and from younger surgeons, to learn from this operation. We want to send the proper and right messages about the DS, and get rid of unscientific statements circulating."

I then wrote back a longer description of what the vets might present, including our empirical and anecdotal recommendations, as well as a call for proper scientific studies to substantiate these recommendations, and his response:

"The plan is to have this conference, once a year, for the next 5 years. So I have to think about your comments, they will be covered, but again the impression out there, is that we have too much "opinions" and lack scientific facts and evidence. The best example of that is how surgeons decided on common channel lengths...No science!"

I am now trying to convince him that "the recommendations and advice being provided by the veteran DS patients is NOT what we want to be incorporated per se into the DS surgeons' protocols (even if it probably COULD be). The purpose of our presentation would be to raise the concern to the surgeons who are ignorant of the fact that their current protocols are just plain WRONG for most DSers, and to raise awareness of the need for proper scientific studies (akin to what we call "the Gagner poop study" that showed 81% fat malabsorption in a small group of 1-2 year out DSers) of actual nutritional needs of DSers over time, and how best to manage them."

We'll see - I think he regrets making the suggestion at the moment, since he has realized that our recommendations might go against HIS protocols. I will have to appeal to his intellectual honesty next, I'm afraid ....

 

[Larra]

I think this conference in and of itself is a great idea and admire Dr. Gagner for initiating it. It sounds like we need to stick to facts as much as possible and keep our points focused on improvement and more standardization of nutritional advice to keep patients out of trouble. Dr. Gagner and hopefully other physicians experienced in with the DS can better discuss the issue of common channel length and size of sleeve, and their opinions on technical aspects of the surgery would be more respected by this audience than ours would be.
If we can do something, anything, to get DS surgeons to provide better nutritional advice and thus avoid a lot of the problems we see post-op, it will help break the self-perpetuating cycle of bad advice leading to nutritional deficiencies leading to non-DS surgeons bashing the DS. And patients beyond those we personally encounter here and on other websites would also benefit.
Obviously I have my own agenda, as I believe whole heartedly that there are far more people who could benefit from the DS than there are people having the DS. There is more than one reason for this, but if we can address the nutritional end of it, eventually it would help with the DS bashing that goes on. Even surgeons who don't do the DS know that it has the best results for weight loss and resolution of almost all comorbidities. THAT is evidence based, so the nutritional complications become an excuse to bash what is presently the most effective bariatric operation available. I don't expect overnight results, we are planting seeds here, but they could be big seeds. And after the conference, we could also create an email we could send to DS surgeons (including those not at the conference) about how this vital issue was discussed at this first annual conference and what the consensus was, or something like that.
So let's see what Dr. Gagner wants and let's not scare him away.

 

[robs477]

I was aiming the outline at the book/powerpoint/website - being comprehensive. I am currently engaged in a discussion with Gagner about what he would want. I asked about the agenda and how many surgeons he expected to attend:

"Thank you for your interest. It is principally for surgeons, the agenda will include one day of live surgery (very technical) and a second day of presentations about results, outcomes, management of complications, including nutritional. This will be a small conference, about 250 participants, and we do not have a lot of industry support at the moment. It will be a consensus conference, meaning that the top surgeons in the World are invited to vote and publish a consensus statement later. There is an increasing interest Worldwide, and from younger surgeons, to learn from this operation. We want to send the proper and right messages about the DS, and get rid of unscientific statements circulating."

I then wrote back a longer description of what the vets might present, including our empirical and anecdotal recommendations, as well as a call for proper scientific studies to substantiate these recommendations, and his response:

"The plan is to have this conference, once a year, for the next 5 years. So I have to think about your comments, they will be covered, but again the impression out there, is that we have too much "opinions" and lack scientific facts and evidence. The best example of that is how surgeons decided on common channel lengths...No science!"

I am now trying to convince him that "the recommendations and advice being provided by the veteran DS patients is NOT what we want to be incorporated per se into the DS surgeons' protocols (even if it probably COULD be). The purpose of our presentation would be to raise the concern to the surgeons who are ignorant of the fact that their current protocols are just plain WRONG for most DSers, and to raise awareness of the need for proper scientific studies (akin to what we call "the Gagner poop study" that showed 81% fat malabsorption in a small group of 1-2 year out DSers) of actual nutritional needs of DSers over time, and how best to manage them."

We'll see - I think he regrets making the suggestion at the moment, since he has realized that our recommendations might go against HIS protocols. I will have to appeal to his intellectual honesty next, I'm afraid ....

@DianaCox,
I also did not mention how cool I think it is for them to seek you out as a speaker/presenter! That just re-affirms to me what I’ve been thinking AND saying since I started coming on this site. It really is an honor for you and I hope you are proud of yourself, because you really do ROCK!

 

[JackieOnLine]

beautiful outline, Diana

 

[kirmy]

Harrumph. I use bullet points instead of paragraphs, because it makes it easier to have side thoughts with fewer than 4 parenthetical sentences within sentences. I would need an editor to make it flow better. Or three.

I concede the woman is not an abridged version. She is divine though and if you spent time with her you'd love her too. Sweet as and funny as fuck.

Bitch visit!

 

[DianaCox]

Abridged? I get paid by the pound for writing - I don't know from short and sweet.