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

[robs477]

@DianaCox, I can’t take it anymore!! I can’t keep up with cut-and pasting all your informative SCIENTIFIC, THEORETICAL, LEGAl, INSURANCE, NUTRITIONAL, etc, etc posts! Is there anything relating to this entire subject of WL &WLS that you are not an expert on? And, I have to read them all at least 3 times just to absorb 30% of it because there is so much information in them, and I’m a reasonably smart guy! I have all these cut-and past articles from the last 7-8 months or so that I’ve saved and I’m TRYING to organize them for my own reference and am having little success, it’s just VERY difficult!...So, I am asking you to PLEASE at least consider writing a book and put this virtual plethora of information, theories, statistics, legalities, insurance, etc, etc, etc in one easy place that we can find, at least an eBook?? You can even self-publish, I know because I do it with my music. I would gladly pay to have all that info compiled in to one easy to find place organized by topics in chapters so that I/we could go too quickly. I’ve seen posts were you broached this subject before, but, please at least think about it and consider? And, please don’t make me beg, it’s not nice!....or I’ll just start a petition.

 

[Barbara]

@robs477 @DianaCox I would buy it in a heartbeat!!

 

[Larra]

How about something like "Bariatric Surgery for People who AREN'T Dummies"?

 

[DianaCox]

How about something like "Bariatric Surgery for People who AREN'T Dummies"?

OMFG - I just snorted Fresca out of my nose!

Supposedly, some day, Dr. Keshishian will get his DSFacts site more updated, and provide a place for a small group of DS Vets to post OUR thoughts (as opposed to what he believes to be true, which *I* don't completely agree with, but he's better than the vast majority of them). But not just me - there are quite a few people around (most of them here) who have special expertise, including in the vitamin realm, which is not my strong suit.

 

[Barb1]

OMFG! I would so pay for a book of this information all in one place with just a chapter for your PCP. Also another for a emergency doctor or EMT's. It boggles the mind to get every article that is needed! Trying to get all the info you need so you can just try an educate a PCP is not easy! I am thinking of getting a new PCP and I don't know if I have the energy.

I like the info Liz has put out there about vitamins and what happens if your deficient is each one. Also the one that is a diagram as to at what point we adsorb the different vitamins. It would take a lot of printer ink just for those alone.

Then there is the one of Spiky's about hyperthyroid crap! I just saw in my doctors records online that my pcp has me down for that. Now I get to try and convince her she is wrong! UGH!!!

Dr. K has quite a few also that should be added to that book of information. His blogs are awesome! I even enjoy watching his actual videos of procedures.

I have some things copied but it is all mind boggling to get it together.

I agree with @robs477. Somebody out their has all of this very important information in a nice little folder or at least a idea for one. I know I am missing something that should be in mine @DianaCox or all of you very smart organized people!!

 

[Spiky Bugger]

Normal people don't REALLY want to read what Diana writes. They think they do. She's brilliant and ever-so-well-informed about a host of topics. And gracious enough to share.

But the woman's PERSONAL email is known to contain subsections and sub-subsections. Sometimes, when she's on a roll, you need to clear time on your calendar to dare to open an email from her! Because sometimes, she authors briefs. Which aren't.

Mr. Sue, MiniSue and I once went to a smallish luncheon where Bill Clinton was the speaker. He MUTTERS in compound-complex sentences. And some fool gave him the mic BEFORE we were served our VERY EXPENSIVE lunch. I was stealing bread off my husband's bread plate to give to the congresswoman on my right, who was rifling through her purse looking for old mints without much lint on them so she wouldn't pass out from hunger. Because we all knew the Prez was NOT going to stop until he was sure that we all had had sufficient explanations that we MIGHT be able to understand him.

Diana doesn't approach things that way...but she is a trained attorney. She conjures up passing thoughts differently than the rest of us do. If she were a cartoon, the bubble over her head would contain several pages of alphanumeric outline, starting with Roman numerals.

If Diana writes a book about the DS...it would be a library. Because that's how much shit about this stuff she just knows. LOL. You would need a room addition. Trust me on this.

 

[Spiky Bugger]

OMFG! I would so pay for a book of this information all in one place with just a chapter for your PCP. Also another for a emergency doctor or EMT's. It boggles the mind to get every article that is needed! Trying to get all the info you need so you can just try an educate a PCP is not easy! I am thinking of getting a new PCP and I don't know if I have the energy.

I like the info Liz has put out there about vitamins and what happens if your deficient is each one. Also the one that is a diagram as to at what point we adsorb the different vitamins. It would take a lot of printer ink just for those alone.

Then there is the one of Spiky's about hyperthyroid crap! I just saw in my doctors records online that my pcp has me down for that. Now I get to try and convince her she is wrong! UGH!!!

Dr. K has quite a few also that should be added to that book of information. His blogs are awesome! I even enjoy watching his actual videos of procedures.

I have some things copied but it is all mind boggling to get it together.

I agree with @robs477. Somebody out their has all of this very important information in a nice little folder or at least a idea for one. I know I am missing something that should be in mine @DianaCox or all of you very smart organized people!!

Yeah...we have to tell them that the parathyroid is just FINE, thank you very much and what we need is to absorb more CALCIUM.

 

[DianaCox]

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.

 

[Spiky Bugger]

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.

Precisely.

 

[robs477]

Normal people don't REALLY want to read what Diana writes. They think they do. She's brilliant and ever-so-well-informed about a host of topics. And gracious enough to share.

But the woman's PERSONAL email is known to contain subsections and sub-subsections. Sometimes, when she's on a roll, you need to clear time on your calendar to dare to open an email from her! Because sometimes, she authors briefs. Which aren't.

Mr. Sue, MiniSue and I once went to a smallish luncheon where Bill Clinton was the speaker. He MUTTERS in compound-complex sentences. And some fool gave him the mic BEFORE we were served our VERY EXPENSIVE lunch. I was stealing bread off my husband's bread plate to give to the congresswoman on my right, who was rifling through her purse looking for old mints without much lint on them so she wouldn't pass out from hunger. Because we all knew the Prez was NOT going to stop until he was sure that we all had had sufficient explanations that we MIGHT be able to understand him.

Diana doesn't approach things that way...but she is a trained attorney. She conjures up passing thoughts differently than the rest of us do. If she were a cartoon, the bubble over her head would contain several pages of alphanumeric outline, starting with Roman numerals.

If Diana writes a book about the DS...it would be a library. Because that's how much shit about this stuff she just knows. LOL. You would need a room addition. Trust me on this.

I know Spiky, it’s not going to happen, but it really is a shame not to be able to collect (at least a %, NOT all) of that knowledge and organize it for a quicker reference. I would easily pay $100 for a book that had all that shit in one place, even an eBook. And YES, it is a collective plethora of knowledge from Diana, but it’s also, Larra, Munchkin, EN, Hilary, Liz and many, many others, even you!

SOMEBODY NEEDS TO DO THIS??? Maybe make a little $$$, along the way too?? I’m not good at it. I am great at saving shit, but flippin HORRIBLE at finding what I save and it is scattered in every GD sector of 3 different computers in 3 different places, not including multiple GD memory sticks etc and I can’t seem to get it all organized for a more “quicker” or efficient reference when I really need it. I guess in 18 more days, I won’t need as much of it and can shift in to the post op info stage so I’m not entirely saying this for my own selfish reasons. But, it really would be a great loss to not capture at least SOME of this collective information from some of you guys, it’s just not right, it’s not fair to all the newbies that are seeking the truth and especially is needed to de-bunk all the GD mis-information that’s out there!! I LITERALLY spent HUNDREDS of hours trying to learn and collect info, whereas if it was in ONE book, It would have saved me SO MUCH TIME! This might even save some peoples lives and spare them from being physically maimed or ruined from the misery of failed surgery's, wrong surgery's bad surgery's etc. There is SO MUCH MIS-INFORMATION out there and somebody needs to step up to the plate and put something meaningful out there that's real! I Its just wrong not to capture this, its not good science! Maybe a "ghost writer" working with our "experts", or some kind of collaborative effort???? There’s a LOT of really smart and really good writers on here, maybe… @hilary1617 or @more2adore or @conceit or ?????

 

[robs477]

OMFG - I just snorted Fresca out of my nose!

Supposedly, some day, Dr. Keshishian will get his DSFacts site more updated, and provide a place for a small group of DS Vets to post OUR thoughts (as opposed to what he believes to be true, which *I* don't completely agree with, but he's better than the vast majority of them). But not just me - there are quite a few people around (most of them here) who have special expertise, including in the vitamin realm, which is not my strong suit.

Again, we don't need another website where you have to scroll and scroll and scroll and search and search and search again to try to figure out what's real and what's bunk and what's old and what's new and what's BS and what's exaggerated and on and on and on. That is NOT the answer. This is a subject matter where I AM THE "EXPERT" on...LOL, because I am still new enough to tell you how time consuming and difficult and painful all that is. The problem is...when you are "ignorant" in any subject, as any newbie is, you don't even know enough to ask the right questions or seek an answer in a search feature because you don't even know enough to know what you don't know! All this knowledge and Information methodically collected and placed in ONE central location, would have literally ben a godsend to me and, in one way or another, I want to help those coming after me and help make this happen. I am not going away as a post-op, (I hope), like a lot of people tend to do when they don't need the site anymore and I am going to pay it forward as you told me to do several months ago.

 

[conceit]

I've heard some people say they wouldn't want to make money off it. But, it's not a bad idea to have a shorter summary document that's a free ebook that can complement a person's research. And, a much more detailed version that can be sold at a reasonable price for people who want a more extensive document. I don't think any book can be a replacement for the online WLS family, so I am not concerned about people making less use of the excellent advice that's offered for free in our communities. I think the ebooks could be an excellent supplement.

 

[DianaCox]

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?

 

[star0210]

I think these items are two of the most important things...because you need your healthcare providers to be on board and to understand the anatomy.
Maybe I think these things are so important right now as I've been reading posts on fb from several people who are having SERIOUS issues and having difficulty getting them addressed properly by medical professionals who have no clue.
Also, because I'm going to be seeing my PCP in the next month and need to try to explain to her my new anatomy so she can better understand my body's needs. Iron is going to be at the top of my list to discuss with her because my iron is low and I need infusions but thus far, I can't convince anybody of that.

• 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

 

[aaa]

I like this outline, Diana.

A couple of things you might want to add [or not; if they're not common enough or germane to the issue].

Postop:

• Dealing with poop & gas
• rubbing issues (tailbone, ankles/knees when sleeping on side, elbow areas on chairs)
• lactose intolerance
• hair loss
• feeling colder (not me but I know tons of others experience this)

Preop:

• does your surgeon remove the gb and/or appendix at time of surgery? (If not, have gb issues as a separate topic postop)