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(deactivated member)
on 1/4/12 9:26 pm - Woodbridge, VA
on 1/4/12 9:26 pm - Woodbridge, VA
Topic: RE: double diabetic
Glad you're at least considering your options; nothing is more painful to read than someone who was fed a line of BS about one procedure or another and made their decisions based on that without more thorough research.
Just some food for thought:
Many patients have gotten the DS with a BMI of less than 50. I happen to have a local friend who got her DS at a BMI of 35 (she had type 2 diabetes) and is now 4+ years out, healthy and maintaining. The DS is the most statistically successful tool for those with a starting BMI of 50+, but that does not make it "riskier" for those with lower starting BMIs, and it is still statistically the most effective for type 2 diabetes regardless of BMI (they even do just the intestinal part of the DS in some other countries on NON-OBESE type 2 diabetics as a means of resolving the diabetes for those who don't even need to lose weight).
Also, the DS doesn't have a "pouch," but rather a "sleeve." I know some surgeons still refer to it as a pouch, but there are important differences: first, the pylorus (the valve that regulates the flow of contents from stomach to intestine) is NOT bypassed with the DS, while it IS bypassed with the RNY. This is what leads to increased risks of dumping syndrome and reactive hypoglycemia in RNY, plus it allows foods to leave the stomach faster, which can make you hungrier again sooner after eating. And, while the DS sleeve is typically larger than the RNY pouch, it still offers great restriction - you will NOT be able to eat the same amount of food at one time as pre-op. They essentially remove about 70-85% (depending on the surgeon) of your stomach, and the remaining sleeve is made from a less stretchy part of the stomach than the RNY pouch (many RNYers have trouble in the long run because they stretch out the pouch and/or the stoma - the connection between pouch and intestine where the pylorus used to be - and then they almost never feel full because the fod flows so quickly out of the pouch).
Please keep in mind that only about 30% of RNYers experience dumping syndrome in the long term, so don't rely on that as a means of controlling what you will eat (plus, some RNYers end up experiencing severe reactive hypoglycemia, not just dumping, which, as you know, can be very dangerous). Not to mention that we are human - I know multiple RNYers who can tell you that dumping does not always work as a deterrent; they just plan their eating so their dumping episodes will happen when they're home with time to deal with it. They also get frustrated because some things that they would expect to make them dump don't, and sometimes they experience dumping and can't pinpoint the cause. Multiple studies have shown that negative reinforcement (punishment) is much less effective than positive reinforcement for behavior adjustment; even dog trainers know that scolding or hitting a dog when they've done something wrong is pretty much useless - rewarding them for GOOD behavior is the better way to train :)
You're very fortunate that your insurance covers both procedures without having to fight!
Just some food for thought:
Many patients have gotten the DS with a BMI of less than 50. I happen to have a local friend who got her DS at a BMI of 35 (she had type 2 diabetes) and is now 4+ years out, healthy and maintaining. The DS is the most statistically successful tool for those with a starting BMI of 50+, but that does not make it "riskier" for those with lower starting BMIs, and it is still statistically the most effective for type 2 diabetes regardless of BMI (they even do just the intestinal part of the DS in some other countries on NON-OBESE type 2 diabetics as a means of resolving the diabetes for those who don't even need to lose weight).
Also, the DS doesn't have a "pouch," but rather a "sleeve." I know some surgeons still refer to it as a pouch, but there are important differences: first, the pylorus (the valve that regulates the flow of contents from stomach to intestine) is NOT bypassed with the DS, while it IS bypassed with the RNY. This is what leads to increased risks of dumping syndrome and reactive hypoglycemia in RNY, plus it allows foods to leave the stomach faster, which can make you hungrier again sooner after eating. And, while the DS sleeve is typically larger than the RNY pouch, it still offers great restriction - you will NOT be able to eat the same amount of food at one time as pre-op. They essentially remove about 70-85% (depending on the surgeon) of your stomach, and the remaining sleeve is made from a less stretchy part of the stomach than the RNY pouch (many RNYers have trouble in the long run because they stretch out the pouch and/or the stoma - the connection between pouch and intestine where the pylorus used to be - and then they almost never feel full because the fod flows so quickly out of the pouch).
Please keep in mind that only about 30% of RNYers experience dumping syndrome in the long term, so don't rely on that as a means of controlling what you will eat (plus, some RNYers end up experiencing severe reactive hypoglycemia, not just dumping, which, as you know, can be very dangerous). Not to mention that we are human - I know multiple RNYers who can tell you that dumping does not always work as a deterrent; they just plan their eating so their dumping episodes will happen when they're home with time to deal with it. They also get frustrated because some things that they would expect to make them dump don't, and sometimes they experience dumping and can't pinpoint the cause. Multiple studies have shown that negative reinforcement (punishment) is much less effective than positive reinforcement for behavior adjustment; even dog trainers know that scolding or hitting a dog when they've done something wrong is pretty much useless - rewarding them for GOOD behavior is the better way to train :)
You're very fortunate that your insurance covers both procedures without having to fight!
Topic: RE: double diabetic
http://www.weillcornell.org/physician/frrubino/index.html
Have a look at the above link. I know you are a type 1.5 but it may be interesting for at least a part of your diabetes. Also go to diabetesforums.com as the info there is just awesome.
Have a look at the above link. I know you are a type 1.5 but it may be interesting for at least a part of your diabetes. Also go to diabetesforums.com as the info there is just awesome.
5ft0; highest weight 222; surgery weight 208; current weight 120
Topic: RE: double diabetic
The one most important thing I learned on here is that the DS is a complex surgery and in order to get decent advice about it you actually have to see a surgical team that knows it and performs it. Otherwise those surgeons who don't do the DS will do their best to steer you away from it. You need to go armed with lots of undeniable scientific info, you need to stand your ground and you need to pick a vetted DS surgeon. Dsfacts.com is a great source of info also. The pouch isn't a pouch with the DS, its a sleeve. It can be made any size but yes, from what I read, its larger than a stand alone VSG sleeve. Because DSers need the extra capacity due to the malabsorption. I haven't had surgery yet either so none of this is experience based but I have been researching a lot to help me decide. There are also lots of lightweights, BMI 32-38 range who have done the DS and they didn't get too thin. Also if you google intestinal or diabetic surgery, they have lots of articles on the malabsorptive portion of the DS only for those who are thin diabetics. The weil centre in Cornell is doing this as a study and Dr Baltazar in Spain has also done it.
With the RnY I would think more than twice because also there are some meds you would not be able to take due to possible ulcers. Also quality of life issues with the pouch... Ugh... And the dumping and reactive hypoglycemia.... Thats really scary. There are some posts on it here and it really sounds horrible. This said, some do well with the RnY. I guess its a lottery to some extent, but the number of revisions and unhappy RnYers on the forums here is certainly higher than the unhappy DSers!
Good luck in your quest! Consult a good DS surgeon. Its key to getting the right info.
With the RnY I would think more than twice because also there are some meds you would not be able to take due to possible ulcers. Also quality of life issues with the pouch... Ugh... And the dumping and reactive hypoglycemia.... Thats really scary. There are some posts on it here and it really sounds horrible. This said, some do well with the RnY. I guess its a lottery to some extent, but the number of revisions and unhappy RnYers on the forums here is certainly higher than the unhappy DSers!
Good luck in your quest! Consult a good DS surgeon. Its key to getting the right info.
5ft0; highest weight 222; surgery weight 208; current weight 120
Topic: RE: double diabetic
Type 1.5 (LADA) describes a person whose onset of type 1 occures in adulthood. Read this breif article for a great description and explanation of type 1.5 diabetes. I hope it's helpful to you.
http://www.diabetesmine.com/2010/03/clarifying-lada-type-1-diabetes-in-adults.html
Here is a quote from the article:
"Many people assume that the first line of the JDRF definition – i.e. an older age at diagnosis – is LADA’s most important characteristic. But it turns out that’s not true. According to Nierras, the key difference between Type 1 diabetes and LADA is not the age of the person when they’re diagnosed, but the gradual way the disease progresses. Whereas people with classical Type 1 diabetes tend to be completely insulin-dependent within twelve months after diagnosis (usually less), people with LADA can often survive without artificial insulin for years.
http://www.diabetesmine.com/2010/03/clarifying-lada-type-1-diabetes-in-adults.html
Here is a quote from the article:
"Many people assume that the first line of the JDRF definition – i.e. an older age at diagnosis – is LADA’s most important characteristic. But it turns out that’s not true. According to Nierras, the key difference between Type 1 diabetes and LADA is not the age of the person when they’re diagnosed, but the gradual way the disease progresses. Whereas people with classical Type 1 diabetes tend to be completely insulin-dependent within twelve months after diagnosis (usually less), people with LADA can often survive without artificial insulin for years.
As Nierras explains, “It’s as though they have Type 1 diabetes, but something slows down the disease so they can stay off of insulin much longer than the classically definable Type 1.""
Sher--the bear mama
Topic: RE: double diabetic
That's a good question, and one for an endocrinologist. But I think you'd still be Type 1.5 because, as I understand it, you don't change types over the course of the disease (unless you were misdiagnosed in the first place). There's a lot at work behind the scenes and this article might help to explain it:
http://en.wikipedia.org/wiki/Latent_autoimmune_diabetes
There are several tests that can lead to and clarify the diagnosis, including GAD and islet cell antibody tests. Have you had these done? Mine conflicted with each other and we used the c-peptide as a sort of "tie breaker". By the way, I did not have these done until 2010 when I was 24 years into all of this. Various doctors always thought I might have been LADA, but never did the tests until I was considering surgery. It was important to have clarity on the type I had so that I could adjust my expectation of what surgery could and could NOT do for me.
I've had very positive outcomes from the surgery in terms of my medication, but I still need metformin to address my insulin resistance. It works quite well now on half the dose I took prior to surgery. My insulin needs have also decreased (even before any significant weight loss) and am getting much better control from it as well. FYI, diagnosed at age 29, lost significant weight at diagnosis but did not respond well to oral medications. I was at my lowest body weight as an adult within a year of diagnosis and went on insulin. I've been insulin dependent for 24 years and diabetic for 25 years - now 54 years old and just under 4 months out from surgery.
http://en.wikipedia.org/wiki/Latent_autoimmune_diabetes
There are several tests that can lead to and clarify the diagnosis, including GAD and islet cell antibody tests. Have you had these done? Mine conflicted with each other and we used the c-peptide as a sort of "tie breaker". By the way, I did not have these done until 2010 when I was 24 years into all of this. Various doctors always thought I might have been LADA, but never did the tests until I was considering surgery. It was important to have clarity on the type I had so that I could adjust my expectation of what surgery could and could NOT do for me.
I've had very positive outcomes from the surgery in terms of my medication, but I still need metformin to address my insulin resistance. It works quite well now on half the dose I took prior to surgery. My insulin needs have also decreased (even before any significant weight loss) and am getting much better control from it as well. FYI, diagnosed at age 29, lost significant weight at diagnosis but did not respond well to oral medications. I was at my lowest body weight as an adult within a year of diagnosis and went on insulin. I've been insulin dependent for 24 years and diabetic for 25 years - now 54 years old and just under 4 months out from surgery.
Topic: RE: double diabetic
I had a BMI of 40 when I was approved for the DS--and when I actually had surgery I was at a BMI of 38. We have plenty of light weight DSrs and it's absolutely untrue that it's a surgery reserved only for the super morbidly obese. As long as you meet the nationally accepted standards for bariatric surgery, you can have the DS. Regarding the RNY, many people with the RNY end up overeating because they either don't dump (not everyone does) or because they become reactive hypoglycemic and need to eat right away after the food has pushed it's way through that stoma. They HAVE to eat in order to raise their blood sugar levels. With the DS, as long as you stay away from most carbs (or limit them severely), you can eat lots and lots of protein and lots and lots of fat. Only 20% of fats are absorbed and many of us need to eat enormous amounts in order to keep our stool soft enough to poop. Most DSrs eat way more than the average person. You're limited by the size of your stomach (mine feels TINY!) but the most important thing with the DS is to make sure you get 100 g or protein at least a day. So you're either drinking shakes or eating foods that are high protein to get the minimum in. For dinner tonight I had an egg (my tummy is still TINY) with extra thick bacon mixed in and lots and lots of cheese mixed in. On New Year's eve, I had 1/4 of a crab cake (it was all I could eat), half hour later I had part of a lobster SOAKED in butter. I did not feel deprived. But with the RNY, you'd be in some serious trouble with all of that fat. If you ask around, many people who've gotten the DS will say that one of the reasons they chose it was because it allowed much more opportunity to eat like a normal person and yet not gain the weight back. No surgery is a sure thing and one can gain back weight with any of them. With the ds, if you fill up on carbs instead of protein, you'll gain back the weight--or at least some of it. But if you're filling up on protein first, you'll only have room for very few carbs and then you're pretty much eating how you'd want. As a Type 1 or 2 diabetic, you are supposed to be avoiding carbs anyway so it shouldn't be too much of a lifestyle change from what you need to be doing anyway.
Also, the malabsorption with the RNY pretty much disappears after the first 2 years or so so you're more likely to gain back your weight. This isn't the case with the DS--the malabsorption doesn't go away--therefore there must be a lifelong commitment to taking vitamins, meeting protein requirements, and getting enough fat into your diet. I love hearing about how DSrs eat. It sounds like a lot of fun. Their slogan is always, "Bacon makes everything better!" Or, "Just add some heavy cream to it!"
Just give it some thought and do LOTS of research about the benefits and draw backs of the RNY. We have SO many RNY to DS revisions on the other board that I'd NEVER consider the RNY.
Oh and as far as the risks regardng doing the DS on a lightweight such as myself (or you), these were my surgeon's exact words,"I wish I had more patients like you. You're BMI isn't out of control, you're pretty fit and can move around well so healing will be better, and your younger (I'm 37). I wish I had more HEALTHY patients come in here for surgery like you." He made no mention of more risk with the lower BMI. Infact, he said it was BETTER.
Again, I wish you luck!
Sheri
Also, the malabsorption with the RNY pretty much disappears after the first 2 years or so so you're more likely to gain back your weight. This isn't the case with the DS--the malabsorption doesn't go away--therefore there must be a lifelong commitment to taking vitamins, meeting protein requirements, and getting enough fat into your diet. I love hearing about how DSrs eat. It sounds like a lot of fun. Their slogan is always, "Bacon makes everything better!" Or, "Just add some heavy cream to it!"
Just give it some thought and do LOTS of research about the benefits and draw backs of the RNY. We have SO many RNY to DS revisions on the other board that I'd NEVER consider the RNY.
Oh and as far as the risks regardng doing the DS on a lightweight such as myself (or you), these were my surgeon's exact words,"I wish I had more patients like you. You're BMI isn't out of control, you're pretty fit and can move around well so healing will be better, and your younger (I'm 37). I wish I had more HEALTHY patients come in here for surgery like you." He made no mention of more risk with the lower BMI. Infact, he said it was BETTER.
Again, I wish you luck!
Sheri
Sher--the bear mama
Topic: RE: double diabetic
thank you...yes, I have noticed more type 1's on here have had DS. I haven't had many replies when I asked in the RNY forum...except to come try this forum and the DS one lol. Well, we'll see...
Topic: RE: double diabetic
thank you, i will certainly bring this up when talking to the surgeon. It's all a lot to take it. Not only do I want to reverse the type 2, but I need to stay healthy with the type 1, so if something like preseving the pyloric valve would prevent problems for me later it is definitly worth considering.
Topic: RE: double diabetic
We have a few Type 1 or even Type 1.5 (LADA) DSrs on the site I mentioned to you in my message. Somehow they've managed to have sucess with the DS. It's a great surgery and a lot of the myths about it (stinky poop, diarrhea, etc.) don't actually happen or can be prevented easily. I'm glad you're considering your options. I know it's daunting. I wish you luck with this journey!
Sheri
Sheri
Sher--the bear mama
Topic: RE: double diabetic
Would a person still be considered a type 1.5 if the type 2 was reversed? As far as I know type 2 is insulin resistance and if that can go away with weight loss. So, IF that happened would someone then be considered just a type 1? or are you 1.5 for life? It doesn't really matter, I was just curious. You seem to know way more about it than I do...
I hear ya though....all this would be so much simpler if I just had type 2 to deal with! Ugh.
I hear ya though....all this would be so much simpler if I just had type 2 to deal with! Ugh.
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