IMPORTANT! Need anecdotal evidence that vets know more than surgeons

[Munchkin]

Chapter 3. That pesky gall bladder.

It's not a revelation most people who have been obese for years will end up having their gall bladder removed. And no expensive prescription will save it. You are going to be in the neighborhood anyway so why not save the patient another surgery and recovery by just taking it out now?

I can't even tell you how many people have posted over the years about their doc 'saving' the gall bladder. And sure enough, 6 months or a year down the road, they are posting about having a second surgery to remove it. This shouldn't happen.

Remember the 3 F's? When a patient presents with abdominal pain if they are Fat, Female, and over Forty...the first thing you check is the gall bladder. True then, true now!

 

[hilary1617]

I agree on all of the other points but personally feel a little different about gall bladder retention.

I really, really wanted my surgeon to remove it with DS. He said he only would if I had symptoms or it had an appearance indicating trouble upon examination during surgery. His view was that removing it could sometimes lead to complications and he didn't want to take it any unnecessary risks. So, I was disappointed, but not surprised, when I came out of the other side of my DS with an intact gallbladder.

Then, about 6 months later, I had to have another surgery for cancer. They removed my gallbladder during that operation because people with my form of cancer tend to need a drug (Sandostatin LAR) that is known to cause gallbladder problems. Sure enough, I woke up from that surgery with bile salt diarrhea, a well-known complication of gallbladder removal. It is a very unpleasant condition, which is readily treated with an expensive drug, Welchol, that I had to take many times a day and which negatively affects absorbtion of vitamins, something that is not great for a DS patient. After two years, the bile salt diarrhea has finally resolved, but those were two long, extra challenging years and there are some folks for which bile salt diarrhea remains for a lifetime post cholescystectomy.

Anyway, In retrospect, I am very glad my gallbladder was preserved during my DS, though I didn't want to hear it back then. I think it would have been very difficult to deal with bile salt diahrrea as an early DS post op. Just my $0.02.

 

[Brandy]

I know you wouldn't put this in the final report, but 99.9% of the surgeons I know would get lost at the statement "vets know more than surgeons". It takes a way, way, way, way healthy ego to cut into people.

Perhaps you could do a survey and so you could title it something like "65% of WLS Patients frustrated with bariatric surgeon follow up." (or what ever that number is.) Just a one question survey "Have you gotten information that could have/did cause you harm from your bariatric surgeon?" would be eye opening enough. Some business questions would be good too, like "45% say they would buy supplements from surgeon's practice if the product met their needs." (or what ever)

I would be happy to put the survey together and calculate the results for you if you like. I love doing things like this. If you would like to do it yourself though, it isn't that hard because there are lots of good tools:

• Zoomerang – Free basic version, surveys polls, 150+ templates
• Qualtrics – cloud-based survey, free account a complete game changer – incredibly well built and powerful
  • Qualtrics Wiki – Joseph Williams
• SimpleSurvey – free online survey creator
• Wufoo - create contact forms, online surveys and event registrations
• Poplytics – online surveys and analytics
• SurveyMonkey- granddaddy of on-line surveys
• SurveyMoz – free on-line surveys
• QuestionPro – on surveys, plus templates
• SnapSurveys – online and mobile surveys
• PollDaddy – from the makers of WordPress, powerful reporting & filtering
• SuperSimpleSurvey – survey creator, branching, mobile ready
• SurveyNuts – Free survey-maker/online questionnaire creation tool

 

[DianaCox]

That would be excellent - I wonder if we could get a reasonable cross-section of at least 100 DSers at least 5 years out - by which I mean reasonably EDUCATED DSers and not those from the STOOPID sites?

 

[Munchkin]

I agree the survey would be a great tool.

 

[southernlady]

That would be excellent - I wonder if we could get a reasonable cross-section of at least 100 DSers at least 5 years out - by which I mean reasonably EDUCATED DSers and not those from the STOOPID sites?

That leaves out many of us who aren't 5 years out yet BUT do know what in the hell we are doing.

And then we have some showing up in other places (like FB) that are 10-15 years out and are JUST now discovering they had been deceived by their surgeons as to vitamins, etc.

 

[DianaCox]

I know it leaves out knowledgeable ones - but I was trying to figure out a way to include mostly those who have gotten to the point of malnutrition AND fixed it with the help of other vets. I'm open to any suggestions to get a survey that only or primarily captures those who got in trouble with following the advice of their surgeons, and fixed it using the advice of the vets. Some some other criteria that would get the surgeons' attention.

I'm wondering if any of the Scandinavians we've helped were in the studies that are reporting poor nutrition and who have been helped by the vets' advice?

 

[Denis Korb]

As I have posted elsewhere, I MIGHT be invited to speak at Gagner's First International Consensus Conference on the DS. I am trying to convince him that by and large:

• The advice that most DSers are getting from most of their surgeons is terribly wrong, and worse than worthless, and is contributing to the difficulties with acceptance of the DS in the US in particular
• That the veterans on SOME message boards (mostly this one!) give advice that is far superior and surgeons need to take note of this fact
• That our anecdotal experiences and expertise need to be validated with clinical trials

I would like to assemble an as extensive as possible compendium of first person stories that are structured along the following outline:

• A description of the (inappropriate) advice that the patient was given by their surgical practice (I would appreciate knowing the name of the surgeon for other purposes, but it will be redacted in what is disseminated)
• A description of the medical problems that ensued
• A description of how your doctors were unable to help
• A description of the advice you were given by other vets that helped

Please be as thorough and yet as concise as possible - we want the surgeons to READ this.

I read the whole thread and I noted you wanted DS'ers 5 years out, but would you want a few who are going through the process now to answer these questions as well to show how advice has or hasn't changed in recent years?

 

[DianaCox]

I read the whole thread and I noted you wanted DS'ers 5 years out, but would you want a few who are going through the process now to answer these questions as well to show how advice has or hasn't changed in recent years?

That's a different point, but not a bad idea. The question isn't so much how the advice from the surgeons has or hasn't changed - it is more evidence that it is still WRONG. The problem is, the doctors have an idea of what's right, and WE PATIENTS seem to be the only ones who know it's wrong, so stories about how patients followed the advice they were given, got in trouble anyway, tried to follow further crappy advice and didn't get better or got worse, and then were "rescued" by the advice of the DS vets is what I am hoping to present, to get the surgeons to do proper studies which prove us right - I mean, objectively determine what is right.

 

[feeder]

Diana, I think I would be one of those cases. Dr. Inman was my surgeon gave me the low fat diet thing, 3 meals a day, 2 snacks. I took to the boards and found you guys. If it were not for you I would have died. My family knows this and questions came on how I could trust you vets. over my surgeons own advice. Spending a year on the boards before my ds and reading everyday I knew I was in trouble right away and took your advice. I was ready and knew what I had to do to stay alive. I was a year out and the wls surgeon in my home town when I went in for some help told me I was going to die and why did I have a ds. I left his office went home and started seeking out more advice from you vets. It's been many years now and I would like to talk to some one about my case. Maybe you, or some one else who can listen and understand why I do what I do. I just do not like internet conversations.

 

[Charris]

Going back to Munchkin's list, I think that in most cases 20 days of pain meds would be excessive, not that that is what she was advocating for in every case. I do see where on occasion it would be necessary but, I would not want to freak the surgeons out with that kind of suggestion.

Some special cases I'm sure they could use 3 weeks. Especially if they had complications during the surgery and have a high resistance to pain meds. I know it takes quite a bit to just make my pain to the point of not wanting to commit suicide. If the person is saying they need them the doctor has to evaluate each case individual. 1 pain med rule for everyone isn't good enough,

 

[Munchkin]

Diana, I think I would be one of those cases. Dr. Inman was my surgeon gave me the low fat diet thing, 3 meals a day, 2 snacks. I took to the boards and found you guys. If it were not for you I would have died. My family knows this and questions came on how I could trust you vets. over my surgeons own advice. Spending a year on the boards before my ds and reading everyday I knew I was in trouble right away and took your advice. I was ready and knew what I had to do to stay alive. I was a year out and the wls surgeon in my home town when I went in for some help told me I was going to die and why did I have a ds. I left his office went home and started seeking out more advice from you vets. It's been many years now and I would like to talk to some one about my case. Maybe you, or some one else who can listen and understand why I do what I do. I just do not like internet conversations.

Nice to see you! You haven't been around in a while. You are missed!