Researching and coming up with more questions

[FloridaJen]

As I continue to research I often read something that leads to more questions. I posted on another thread of mine that I have my consult on Monday, so I will hopefully get some answers, but I don't want to scare Dr. Smith away with everything on my mind.

First I want to tell you what just happened to me and hope the candor of this group will help me stop freaking out. This surgery is scary, any surgery is scary, and I'm a worrier and worst-case scenario thinker by nature. Usually, I think through all the horrible things and then make my decision and that brings a certain peace. I got my consult scheduled yesterday, along with nutritional & psych eval (one trip!) and today I was walking on air, feeling so optimistic and ready. Then I sent a Happy Birthday text to an old (and good) friend of 30 years. We don't talk very often and he knows nothing about surgery or even my current health issues. He responded telling me he was going to text or call me today because he had a horrible dream something bad happened to me. He was bawling and screaming my name in his sleep.
This is NOT something you want to hear while you're planning for major surgery. I'm honestly completely freaked out by this because I have had these premonition type dreams in my life and they came true. Someone tell me I'm being ridiculous.

Now, my questions - if anyone has any valuable input I greatly appreciate it.

1. Someone stated here that the Diabetes remission rate is a lot lower for people on insulin. Is this true? If so, where can I read about why?

2. I now know why people keep this surgery to themselves. I was telling a friend today what I'm planning and she told me her cousin and husband had the DS 6 years ago. Both have been in an and out of the hospital and have gained 60% of their weight back. And he's back on insulin. I know that this surgery isn't the end all be all fix, but ugh. Is this common? This is the first I've learned about this much of a significant gain with the DS - and two of them.

3. The post about nursing home nutrition. Without someone close to us or even the people on this site, which we don't know that we can count on forever, how do we prepare for these situations - being in the hospital, rehab, nursing homes - anywhere we can't control our food choices. I know this sounds like I'm really trying to borrow trouble and maybe that's my mood for the day is "crazy", but I can't help think about this stuff.

4. With all the variations of supplement recommendations, from doctors to the 100 different types of advice given here, how do you know what's best for you BEFORE getting into a deficit? Overkill and taper down from there?

5. So many old posts from people who don't come around anymore. I've messaged a few with no responses. Should we assume they are happy and healthy?

I really appreciate those of you who continue to answer my questions and for sharing your experiences. I know from my old crapband days how tiring it can be to stick around these boards and continue to answer the same questions over and over again. I have searched for many of my questions and gotten a lot of answers, so thank you.

Jen

 

[Larra]

I'll address just a couple points. First, most people who haven't had bariatric surgery lump every "weight loss surgery" into one big heap. This means that the two people who supposedly had the DS probably had something else - gastric bypass, lap band, who knows. The person you spoke with almost certainly doesn't really know. Often, pre-ops call various surgeons' offices to see if they do the DS and office staff tells them "oh yes, he does all the operations" and they don't even know there is something called the DS and their employer doesn't do it. And they work in the bariatric surgery field. That's how great the level of ignorance is. So take what that person said with about a pound of salt.

Next, about the people here you aren't reaching - I've been on this and other bariatric surgery websites for over 13 years now. People come and go. Some show up every year or so. Some are never seen again. We hope they are out there living their best lives, certainly it's not a reason to think something awful has happened to them.

Last, diabetes - from what I've read, it's not so much about whether or not you use insulin, it's more about how long you've been diabetic. Which is sad, in a way, because so many people hold off on having bariatric surgery, because they are afraid of the risks, or because they just have to try dieting again one (or 5 more times). So IMHO for someone who is MO and has type 2 diabetes, surgery is a the sooner the better thing. Also, while the rate of permanent resolution isn't 100%, the DS still has the highest rate of permanent resolution of type 2 diabetes of any bariatric surgery, so it's definitely the way to go.

 

[Munchkin]

5. Most of the oldies are happy and healthy. Many participated in the past but they go on to live their lives and we won't hear from them unless they have issues in the future. A few of us oldies stay here to pay it forward. It's just a choice. Eventually postop life is just life. The DS takes over your life for a while but then you get used to it and move on to other things!

4. You just start with something like vitalady and move on from there. Once you have your lab results you know what you need more or less of. Many people do have deficits. You probably have them right now. Many if not most normies are deficient in something. They just don't know because they have never been tested. You just adjust your doses and plod on.

3. AAAHHHHH yes, the nursing home question. This comes up now and then and it's valid. Here's how I feel and this is after spending time taking care of others, professionally, and spending a decade taking care of my father. If I am not with it enough to manage my own care and feeding, it's time for me to take the dirt nap. If it's a short term problem, no worries. I will come back and pick up where I left off. I am grateful for the good decades the DS gave me. Ones I probably would not have had without it.

2. Yes, everyone's Uncle's, sister's, brother's, cousin had this surgery and it was a disaster. First of all beware when non-medical people talk about medical issues. Most of what they say is bogus. How many people do you even know who know what the DS is? And people tend to lump us all together as weightloss surgery. Generally, they have no idea what they are talking about. Most problems are pilot error. You already know this. WLS does not give you a brain. That you already have. Some fat people are just fat. Others have serious issues.

1. That 95.something% is for all type 2's who had surgery. Insulin or not. Some of the heavy users who have been on insulin for decades may take longer to get off the insulin but that varies. Big picture. What else can you do that will give you this good of a chance to get rid of diabetes? Nothing. Give me a 95% chance of winning and I will throw the dice. Even if you are in the unlucky 4.something%, you will still be better off than you are now anyway.

About 15 years ago I got a phone call from a man named Jim. I knew another friend had given him my number. He asked me out to dinner. He wanted to see if I could really eat. He took me to a steak buffet. I ate enough to make him think he could live with the surgery. Jim weighed about 400lbs and had been an insulin dependent type 2 for more than 30 years. 4 shots a day plus pills. He had the surgery. It took him about 6 months to get off all his meds. He never made it to thin because he was just having too much fun eating(his choice). He just ended up looking obese. If he had done nothing I am sure he would be dead by now. He was an ophthalmologist and he knew he was going to have serious eye issues because of his type 2. He wanted to live to see retirement. He got his wish.

And then there is my husband. You should read his story too. https://bariatricfacts.org/threads/ds-for-diabetes-dans-story.355/

 

[southernlady]

1. I just posted this: https://bariatricfacts.org/threads/the-last-little-while-has-been-busy.6671/page-2#post-99724
2. Every surgery has risks. You can mitigate that by being as healthy as possible before surgery and by choosing your surgeon carefully.
3. Nursing home situation. Yeah, that’s an issue but it can be handled. It might take being very proactive or having someone to be proactive on your behalf.
4. Start with the Vitalady list and then after you get post op labs, adjust as needed. Easier to correct too much than bringing lousy values out of the toilet.
5. People come and go. We have lost a few members, 3 I believe, since we opened the doors here in Jan 2014. Two had heart attacks totally unrelated to the DS, and one we don’t know exact cause but from what I heard it wasn’t DS related directly. We’ve almost lost Charris three times now. She keeps scaring us.

 

[Settledownnow]

1- Re: WLS forums. People have lives and they come and go. I have been on various WLS forums for about 17 years. After RNY in 2003, I went away because I desperately wanted to be "normal" and to stop thinking about bariatric surgery. Without having any real WLS support, I went "off the rails" and regained in a big way. After having revision surgery in 2016, I stay around the forums to make sure I am on the right path health, food, and supplement wise. Going away is not a good choice for me if I want to keep my weight off and stay healthy. It is my online support. I wish I could say I want to "pay it forward" but really I am selfish and I stay around for me.

2- Re: Hosp/NH care. Many people in nursing homes or hospitals have other health problems, have had complicated revisions, and/or were just negligent in DS self-care. If you read FB DS groups for awhile you will see how many non-compliant and ignorant people bring problems onto themselves. In the event that you did become terribly malnourished, you can get TPN and get your health status improved, or you could reverse the malabsorption part of your surgery. In truth, if you make it part of your everyday lifestyle, like brushing your teeth, you are going to incorporate into your care. After surgery, you are going to help educate your PCP about your needs, if he/she does not already know about the DS. Beware, the education process means you have to assertive and advocate for yourself. If you say, "Well my doctor says that I should not take all this vitamin A " or whatever, you will be lost. Repeat after me: Just because he/she is a doctor does not mean they know everything about the DS. Get ready because you are going to be the expert of you. Staying with this forum will help you check out whatever your doctor tells you relative to the DS.

3- Re: insulin. No risk, no reward. Nothing in life is guaranteed but you have a chance to get off your meds and to drastically improved the quality of your life. I am so happy to be off high BP meds and be medication free. My knees used to hurt so much and I was out of breath just walking and moving around. I am in my late 50's now and feel like I am 30. I just rode my bike 10 miles today!

4- Re: dream. You are being silly. Pay no attention to the dream. Maybe his dream was that he is frightened for your current health and he thinks you are on the verge of dying. As we get older we start to project our own fears onto others. There are certain friends/family members that when I hear from my heart stops because I think they must be in the hospital dying. I worry about them because of their weight and their health. Consider it a sign that you need to do your due diligence about surgery and aftercare.

5- Re: telling others. You have to stand strong in your decision. I do not discuss my surgery or my general health with just anyone. It is private. Honestly, some people have no sense of personal boundaries! There is still a stigma attached to body weight and bariatric surgery. If you want to be open about it, fine, but expect all kinds of comments. Some will be supportive, some noisy, and there will many unkind or even nasty.

6- Re: supplement/labs. You can do this. Read, read, read. After surgery, start with the Vitalady supplement list, get your labs draw at least every 6 months for the first couple of years until your levels are stable, and then adjust downward or upward if needed. You are always going to try to get your blood values into the middle range. There is a learning curve, but you can do it. Practice reading posted labs. There are many people here who can help if you post your labs on the forum. This will also help you learn how to do it.

 

[Spiky Bugger]

#2–can you find out the name of their surgeon...or even the hospital where they had the DS?

#4-your labs will be INSANE for a good six months post op. THEN, I think that going by what MY labs say, I can decide what I NEED.

 

[FloridaJen]

Thank you all so much for your responses. I am going to address a few things directly, but first I wanted to share the chat with the friend re: failed DS. I guess I asked for it, but it's clear she isn't going to want to answer any more questions about them. She's in bold.

What procedure are you choosing?

Duodenum switch
Been researching for 10 years

Oohhh

Familiar?

Yes
My cousin & his wife did it together

And?

You have to do what is best for you!
Not everyone is the same

When did they have it? How are they doing? It’s all about follow up and supplements. So many people don’t.

It’s been about 6 years
They still have issues
I don’t really want to go into them.... everyone is different and I don’t know the full details, I just know they have both been in the hospital a few times. Weight dropped, but gained about 60% back and he’s on insulin again

 

[DianaCox]

My understanding of why being on insulin, or diabetic for a long time matters in the outcome: insulin resistance results in your pancreatic islet cells having to crank out more and more insulin to generate enough to force glucose into the body’s cells. Eventually, the overtaxed islet cells literally become exhausted and die. While the DS resolves the underlying insulin resistance, the long term results depend on how much residual islet cell capacity you have left.

I’d bet your friend’s cousin and spouse didn’t actually have a traditional two anastomoses DS. See if you can find out the name of the surgeon.

 

[FloridaJen]

I'll address just a couple points. First, most people who haven't had bariatric surgery lump every "weight loss surgery" into one big heap. This means that the two people who supposedly had the DS probably had something else - gastric bypass, lap band, who knows. The person you spoke with almost certainly doesn't really know. Often, pre-ops call various surgeons' offices to see if they do the DS and office staff tells them "oh yes, he does all the operations" and they don't even know there is something called the DS and their employer doesn't do it. And they work in the bariatric surgery field. That's how great the level of ignorance is. So take what that person said with about a pound of salt.

Next, about the people here you aren't reaching - I've been on this and other bariatric surgery websites for over 13 years now. People come and go. Some show up every year or so. Some are never seen again. We hope they are out there living their best lives, certainly it's not a reason to think something awful has happened to them.

Last, diabetes - from what I've read, it's not so much about whether or not you use insulin, it's more about how long you've been diabetic. Which is sad, in a way, because so many people hold off on having bariatric surgery, because they are afraid of the risks, or because they just have to try dieting again one (or 5 more times). So IMHO for someone who is MO and has type 2 diabetes, surgery is a the sooner the better thing. Also, while the rate of permanent resolution isn't 100%, the DS still has the highest rate of permanent resolution of type 2 diabetes of any bariatric surgery, so it's definitely the way to go.

She is pretty in the know about these things because several people in her family have had WLS surgery. But that doesn't mean she's right, just that it would surprise me if she was wrong about this because she differentiated what her aunt had "bypass" with her cousins. Her aunt, also fatter than ever.

Seems the general answer is that it depends on how long I've been diabetic or on insulin. I think I have a fighting chance at being that 95% to have remission luck since I was diagnosed 4 years ago and managed it for almost 2 years without any meds at all. But then I very rapidly jumped right into insulin last month, so I guess it's a crapshoot.

 

[FloridaJen]

3. AAAHHHHH yes, the nursing home question. This comes up now and then and it's valid. Here's how I feel and this is after spending time taking care of others, professionally, and spending a decade taking care of my father. If I am not with it enough to manage my own care and feeding, it's time for me to take the dirt nap. If it's a short term problem, no worries. I will come back and pick up where I left off. I am grateful for the good decades the DS gave me. Ones I probably would not have had without it.

I can totally relate to this way of thinking. If I'm so far gone I don't know that I need to take vitamins or eat protein, let me go.

1. That 95.something% is for all type 2's who had surgery. Insulin or not. Some of the heavy users who have been on insulin for decades may take longer to get off the insulin but that varies. Big picture. What else can you do that will give you this good of a chance to get rid of diabetes? Nothing. Give me a 95% chance of winning and I will throw the dice. Even if you are in the unlucky 4.something%, you will still be better off than you are now anyway.

The way I've been feeling with these injections and oral meds, I just can't imagine not trying everything.

About 15 years ago I got a phone call from a man named Jim. I knew another friend had given him my number. He asked me out to dinner. He wanted to see if I could really eat. He took me to a steak buffet. I ate enough to make him think he could live with the surgery. Jim weighed about 400lbs and had been an insulin dependent type 2 for more than 30 years. 4 shots a day plus pills. He had the surgery. It took him about 6 months to get off all his meds. He never made it to thin because he was just having too much fun eating(his choice). He just ended up looking obese. If he had done nothing I am sure he would be dead by now. He was an ophthalmologist and he knew he was going to have serious eye issues because of his type 2. He wanted to live to see retirement. He got his wish.
And then there is my husband. You should read his story too. https://bariatricfacts.org/threads/ds-for-diabetes-dans-story.355/

Thank you for sharing that story about your friend, Jim. I love it.
And I had already read the story about your husband (so touching), but I did not know he was your husband - I'm so very sorry for your loss.

 

[FloridaJen]

1. I just posted this: https://bariatricfacts.org/threads/the-last-little-while-has-been-busy.6671/page-2#post-99724
2. Every surgery has risks. You can mitigate that by being as healthy as possible before surgery and by choosing your surgeon carefully.
3. Nursing home situation. Yeah, that’s an issue but it can be handled. It might take being very proactive or having someone to be proactive on your behalf.
4. Start with the Vitalady list and then after you get post op labs, adjust as needed. Easier to correct too much than bringing lousy values out of the toilet.
5. People come and go. We have lost a few members, 3 I believe, since we opened the doors here in Jan 2014. Two had heart attacks totally unrelated to the DS, and one we don’t know exact cause but from what I heard it wasn’t DS related directly. We’ve almost lost Charris three times now. She keeps scaring us.

1. Thank you!! I just read it and feel good about my odds.
2. I have chosen my surgeon, I just hope chooses me.
3. Glad to know this has come up before
4. Got it, thanks
5. I've been following Charris, so glad she's continuing to pull through. She prompted my nursing home question!

 

[FloridaJen]

1- Re: WLS forums. People have lives and they come and go. I have been on various WLS forums for about 17 years. After RNY in 2003, I went away because I desperately wanted to be "normal" and to stop thinking about bariatric surgery. Without having any real WLS support, I went "off the rails" and regained in a big way. After having revision surgery in 2016, I stay around the forums to make sure I am on the right path health, food, and supplement wise. Going away is not a good choice for me if I want to keep my weight off and stay healthy. It is my online support. I wish I could say I want to "pay it forward" but really I am selfish and I stay around for me.

You can't be selfish with a thoughtful response like this for me. Thank you for being here, no matter the reason.

2- Re: Hosp/NH care. After surgery, you are going to help educate your PCP about your needs, if he/she does not already know about the DS. Beware, the education process means you have to assertive and advocate for yourself. If you say, "Well my doctor says that I should not take all this vitamin A " or whatever, you will be lost. Repeat after me: Just because he/she is a doctor does not mean they know everything about the DS. Get ready because you are going to be the expert of you. Staying with this forum will help you check out whatever your doctor tells you relative to the DS.

This is one area I do not need much help with. I have been fired from more than one doctor in my life because I speak up and tell them what I know about MY body. My current PCP, who I have yet to talk to about my plans, will not have any idea about the DS - but hoping she will be receptive. If not, I will find one who will.

3- Re: insulin. No risk, no reward. Nothing in life is guaranteed but you have a chance to get off your meds and to drastically improved the quality of your life. I am so happy to be off high BP meds and be medication free. My knees used to hurt so much and I was out of breath just walking and moving around. I am in my late 50's now and feel like I am 30. I just rode my bike 10 miles today!

Love it!

4- Re: dream. You are being silly. Pay no attention to the dream. Maybe his dream was that he is frightened for your current health and he thinks you are on the verge of dying. As we get older we start to project our own fears onto others. There are certain friends/family members that when I hear from my heart stops because I think they must be in the hospital dying. I worry about them because of their weight and their health. Consider it a sign that you need to do your due diligence about surgery and aftercare.

I thought about that after I posted, maybe he's dreaming about my current state? It was just so eery how he had this dream right now, right after I finally made appts and peace about it.

5- Re: telling others. You have to stand strong in your decision. I do not discuss my surgery or my general health with just anyone. It is private. Honestly, some people have no sense of personal boundaries! There is still a stigma attached to body weight and bariatric surgery. If you want to be open about it, fine, but expect all kinds of comments. Some will be supportive, some noisy, and there will many unkind or even nasty.

It's going to be tricky deciding who to tell, for sure. I have a lot of support, but people assume when someone has WLS they 1) didn't do EVERYTHING possible first and 2) will likely gain their weight back

6- Re: supplement/labs. You can do this. Read, read, read. After surgery, start with the Vitalady supplement list, get your labs draw at least every 6 months for the first couple of years until your levels are stable, and then adjust downward or upward if needed. You are always going to try to get your blood values into the middle range. There is a learning curve, but you can do it. Practice reading posted labs. There are many people here who can help if you post your labs on the forum. This will also help you learn how to do it.

Thank you!

 

[FloridaJen]

My understanding of why being on insulin, or diabetic for a long time matters in the outcome: insulin resistance results in your pancreatic islet cells having to crank out more and more insulin to generate enough to force glucose into the body’s cells. Eventually, the overtaxed islet cells literally become exhausted and die. While the DS resolves the underlying insulin resistance, the long term results depend on how much residual islet cell capacity you have left.

I’d bet your friend’s cousin and spouse didn’t actually have a traditional two anastomoses DS. See if you can find out the name of the surgeon.

Makes sense. I will try, but she seemed to want to shut it down pretty quickly.

 

[FloridaJen]

#2–can you find out the name of their surgeon...or even the hospital where they had the DS?

#4-your labs will be INSANE for a good six months post op. THEN, I think that going by what MY labs say, I can decide what I NEED.

I will try, but I don't think she will want to go there.

Insanely good, I hope.

 

[Spiky Bugger]

I will try, but I don't think she will want to go there.

Insanely good, I hope.

No.

They will reflect that your body has undergone a severe shock...like being hit, hard, by a bus. The point being that they are not to be counted on, or so I was told, for the first several months.