Bandster Seeking Answers to DS Questions

[MrsGMO]

[The following is an overly-wordy introduction by a failed bandster along with some questions about revising to the DS.]

First, let me say thank you to the brave souls who founded and support this website, and to those who mentioned it on OH's Lap-Band forum. I have been reading threads here for the past few months and am becoming less afraid of the DS. I am bruised from kicking myself for not having the DS in 2005 instead of the band, but, oh well...

In 2005, a web-friend mentioned looking into weight loss surgery, RNY or Lap-Band specifically, after being at the end of her diet rope. I spent weeks on end at OH for options and decided that the DS might be the best one since I weighed 302 lbs. (BMI 53.5). Unfortunately, the DS terrified my husband and we decided the band would be much safer. At the seminar, the surgeon quoted an 85% success rate and we were both sold on the reversibility of the band.

I had surgery in June and lived by the bandster rules about 80% of the time. I exercised as best as I could but only lost 44 lbs. over two years. Then in 2008 I went through severe, emotional trauma (resurfaced memories of sexual abuse) which caused me to be constantly upset and nauseated for months on end. My stomach would tighten up and convulse, and I would dry heave and burp non-stop. I lost about a pound a week for the next two years, probably more due to the memories than the band. It was difficult to eat healthy food but by the grace of God I managed and kept each meal to the recommended 4 oz. along with daily protein shakes.

In Nov. 2009, I developed a lot of swelling and severe pain in my abdomen. My doctor said I had lots of gallstones, but the internist she referred me to instead sent me to an OB/GYN for further tests. He found an 8mm ovarian tumor and I had a complete hysterectomy in Feb. 2010. Two months later, my weight reached 151.9 (BMI 26.9) and I was close to wearing size 8 jeans, but was having a rough time with estrogen levels and became suicidal. I was so fatigued and couldn’t eat much (8-900 calories/day) but kept walking 3-4 hours/week to maintain my weight. Soon, I could do little other than retreat far into myself, and stayed at home with deep depression. I was so sad; I'd been making progress after essentially being homebound for years, and was just beginning to make eye contact whenever I went out shopping. Anyway, my weight stabilized somewhat, just bouncing up and down a few pounds, but I was white-knuckling it big-time. Seven months later, my beloved husband had back surgery #2 and I completely fell apart. I vividly remember standing in front of the hospital’s vending machines with $10 worth of change, knowing this was the beginning of the end of my success with the band. I am ashamed to say the feed bag has been strapped on ever since.

Since then, I’ve gained back over 60 pounds and my BMI is 38. The Type 2 Diabetes has returned plus the edema, heel spurs, high cholesterol, arthritis in my hips, stress incontinence, bad skin and utter hopelessness. Pretty soon I will call my doctor, mention my weight gain and that I should probably go back on Glucophage, Toprol and/or Benicar. Good thing I kept the ol' glucose meter.

I truly despise myself, not just for failing again but for having the nerve to hope for another surgical "out" in the DS. But before I contact a surgeon, I'd like to ask some questions of anyone with a band-to-DS revision.

1) I haven’t had diet motivation for quite some time and know that all surgeries require some sort of low carb diet post-op, especially the DS. I tried Protein Power in 1996 (lost 20 lbs. then gained) and then Atkins/Bernstein from 1997-2002 (lost 115 lbs. then gained). On Atkins, I would do OK for weeks and then go nuts on carbs for a weekend. How would the DS work for someone who can’t stick with anything perfectly? Did anyone follow a low-carb diet for a long time, lose loads of weight and then gain it back before their DS?

2) Every time I do low carb for long enough, my diabetes goes into remission. I’ve read about the DS’s 98% cure rate and heard someone say that the DS changes metabolism to correct insulin resistance. Is this strictly due to the low carb diet, the DS, or both combined?

3) Most band revisions seem to be done on folks who either never got to goal or had serious complications. I did hit a goal weight of 152 lbs. but could only maintain it for four months and the only complication I've had is gastritis for the last three years. Would a surgeon consider me noncompliant and refuse to do a DS?

4) My gall bladder is full of stones and I have attackes 3-4 times each month. I’ve read that many who have theirs removed are put on a low-fat diet and prescribed Actigall or bile acids. Would this conflict with the DS diet, where a higher-fat diet is encouraged?

5) I haven’t given it much thought of late, but in 1999 I had a diagnosis of gastroparesis (delayed gastric emptying) by a D.O./allergist who was a bit of a quack. Could this diagnosis be a problem with the DS if I have vagus nerve damage?

6) I currently have a BMI of 38; would a DS surgeon revise me now or want to wait until I have a BMI closer to 50?

7) My husband says that, if it's at all possible, we’ll get the DS before the end of the year since we’ve already met the deductible. Would anyone mind sharing what the complete amount you were charged to revise the band to a DS?

Thank you for suffering through this thread! Any insight and all answers are most welcome.

[lynn22]

have the gallbladder taken out; takes care of that!

Check out the DSfacts.com website. Lots of good info there.

As to being "non-compliant", if we could lose weight without the surgeries, we would have and all this would be academic.

Good for you in doing your research!!

[larra]

I can't speak as a band to DS revision since I (thankfully) never had a band, but I will try to address some of your concerns.

First and most importantly, I hope you are in therapy, not because of your weight, but because you still have issues from the sexual abuse you suffered. Always remember that this was not your fault, it was never your fault, and that you deserve a good life.
Next, will a surgeon revise you? That depends on the surgeon, but most surgeons who do the DS will do band to DS revisions, and it sounds like you meet the standard NIH criteria for wls with a bmi of 38 and diabetes. I would recommend contacting Dr. Stewart, as he seems to be the go-to DS surgeon in your state. If that doesn't work out, check the list of vetted DS surgeons at www.dsfacts.com for more suggestions.
I think the bigger question is whether or not your insurance will cover your revision, and that depends on your policy, so get a copy of your policy and see what's covered. Do not rely on some customer service person over the phone, they do not have your best interests at heart. Read the policy yourself and see what you need to do to qualify.
Gall bladder - either get it out now or, if you do qualify for a revision, get it removed during that revision. Lots of people have their gall bladder removed during wls. I did! And no worries about the DS diet post-op as it relates to the gall bladder, you will be able to eat fat just like the rest of us (after the recovery period, of course).
As far as being noncompliant goes, I'm amazed you survived the lap band diet as long as you did. Almost all of us lost weight and regained it before our DS. How do you think we all became MO? We all tried our best, and surgery was the last resort for all of us. You are no different in that regard from anyone else on this forum. It is far, far easier to be compliant with the DS that with the band, which requires a very unnatural diet and way of eating for success. You were lied to. The failure rate for the band is high, and it has the highest rate of reoperation of any wls. You are not alone.
You probably already know this, but if you have the DS, you MUST take certain vitamins and supplements and you MUST eat plenty of protein to maintain your health. Even if the world is falling part around you, even if you are also eating things you shouldn't eat, you MUST continue to do these things.

I hope you will be able to get your revision, and wish you the best.

Larra

[Band to DS]

I'm so glad that you found us here & posted your story! Not too many people read the Revisions forum (yet), but there's tons of good info on the Duodenal Switch forum.

I'm having a lap band to DS revision in 3 weeks. I'll post a longer message when I have more time. (I just got off work & I'm exhausted.) For now, I just wanted to say "hi" and give you a warm welcome.

Shelli

[MrsGMO]

Apr 23, 2012 1:39:47 GMT -5 lynn22 said:

have the gallbladder taken out; takes care of that!

Check out the DSfacts.com website. Lots of good info there.

As to being "non-compliant", if we could lose weight without the surgeries, we would have and all this would be academic.

Good for you in doing your research!!

Thank God I have fairly infrequent GB attacks these days and hope I can wait until the DS to have it taken out so as not to undergo more than one surgery.

Thanks for the encouragement.

[MrsGMO]

First and most importantly, I hope you are in therapy, not because of your weight, but because you still have issues from the sexual abuse you suffered. Always remember that this was not your fault, it was never your fault, and that you deserve a good life.

Thank you for your kind reply, which is exactly what my husband has been telling me as I have slowly shared my "new" and shocking past with him. My pastor has also been of great help; between the two of them I feel that I am beginning down a good road. I have such a long way to go.

Next, will a surgeon revise you? That depends on the surgeon, but most surgeons who do the DS will do band to DS revisions, and it sounds like you meet the standard NIH criteria for wls with a bmi of 38 and diabetes. I would recommend contacting Dr. Stewart, as he seems to be the go-to DS surgeon in your state. If that doesn't work out, check the list of vetted DS surgeons at www.dsfacts.com for more suggestions.

As it just so happens, I was actually planning to contact Dr. Stewart if and when the time comes.

I think the bigger question is whether or not your insurance will cover your revision, and that depends on your policy, so get a copy of your policy and see what's covered. Do not rely on some customer service person over the phone, they do not have your best interests at heart. Read the policy yourself and see what you need to do to qualify.

Thanks, I'll ask DH to see about insurance policy and see what, if anything, can be done through them.

Gall bladder - either get it out now or, if you do qualify for a revision, get it removed during that revision. Lots of people have their gall bladder removed during wls. I did! And no worries about the DS diet post-op as it relates to the gall bladder, you will be able to eat fat just like the rest of us (after the recovery period, of course).

Good to know! I will definitely try to wait so I can only go through one surgery.

As far as being non-compliant goes, I'm amazed you survived the lap band diet as long as you did. Almost all of us lost weight and regained it before our DS. How do you think we all became MO? We all tried our best, and surgery was the last resort for all of us. You are no different in that regard from anyone else on this forum. It is far, far easier to be compliant with the DS that with the band, which requires a very unnatural diet and way of eating for success. You were lied to. The failure rate for the band is high, and it has the highest rate of reoperation of any wls. You are not alone.

Of course, this is what I'd like to hear but was afraid to hope that the band failed me instead of vice verse. I tried so hard for so long... I still see band websites with lots of awe-inspiring success stories and wonder. I think perhaps the band does work for a lot of people or else surgeons such as Dr. Stewart wouldn't perform them. I guess the band just didn't work over the long haul for me.

You probably already know this, but if you have the DS, you MUST take certain vitamins and supplements and you MUST eat plenty of protein to maintain your health. Even if the world is falling part around you, even if you are also eating things you shouldn't eat, you MUST continue to do these things. I hope you will be able to get your revision, and wish you the best.

Understood. I am seeing this over and over, in capital letters, that hydration, protein, supplements and lab work are all the main factors in not only success but survival with the DS. I also understand that it's all very serious and that there's no going back with the DS. Severe side effects will happen with laziness and misinformation, so I must take it all extremely seriously.

Thank you for your great and informative reply. God bless you!

[MrsGMO]

Apr 23, 2012 20:49:48 GMT -5 Band to DS said:

I'm so glad that you found us here & posted your story! Not too many people read the Revisions forum (yet), but there's tons of good info on the Duodenal Switch forum.

I'm having a lap band to DS revision in 3 weeks. I'll post a longer message when I have more time. (I just got off work & I'm exhausted.) For now, I just wanted to say "hi" and give you a warm welcome.

Shelli

Hello, and thank you for your reply and kind welcome.

I have been reading a lot on the DS forum; it's very encouraging to read the successes. It's also eye-opening to see the struggles that long-timers still have. No WLS is perfect, but then again, neither is life. It seems we all struggle in some way.

I'm very happy you are getting your revision and am really looking forward to hearing of your progress, especially since I hope to be in the same boat before long. The best of luck to you!

[Deleted]

I don't want to make you feel any worse...especially with the emotional stuff you have going on...but the truth is, your band experience is not at all unique.

The band is a piece of shit. It is--and I take great pride in being the person who coined this phrase--A Diet With A Choke Chain. And the overwhelming majority of people who get the band suffer through much of what you have described.

YOU did not fail...except maybe by trusting the guy who sold you the band. It should NEVER have been placed in someone with a BMI of 53.5. In fact, research says that it should probably never be placed in someone with a BMI of 46 or higher...unless you don't mind "failing" and having another surgery to take it out.

And a BMI of 38...not exactly the end of the world around here. Anyway...


1) I haven’t had diet motivation for quite some time and know that all surgeries require some sort of low carb diet post-op, especially the DS. I tried Protein Power in 1996 (lost 20 lbs. then gained) and then Atkins/Bernstein from 1997-2002 (lost 115 lbs. then gained). On Atkins, I would do OK for weeks and then go nuts on carbs for a weekend. How would the DS work for someone who can’t stick with anything perfectly? You may not get to a "perfect" weight. Did anyone follow a low-carb diet for a long time, lose loads of weight and then gain it back before their DS? I've never followed any diet for a long time. That's why I needed the DS.

2) Every time I do low carb for long enough, my diabetes goes into remission. I’ve read about the DS’s 98% cure rate and heard someone say that the DS changes metabolism to correct insulin resistance. Is this strictly due to the low carb diet, the DS, or both combined? It's not due to the diet. Someone who understands this better can tell you more, but many leave the hospital no longer diabetic. It's magic.

3) Most band revisions seem to be done on folks who either never got to goal or had serious complications. I did hit a goal weight of 152 lbs. but could only maintain it for four months and the only complication I've had is gastritis for the last three years. Would a surgeon consider me noncompliant and refuse to do a DS? No.

4) My gall bladder is full of stones and I have attackes 3-4 times each month. I’ve read that many who have theirs removed are put on a low-fat diet and prescribed Actigall or bile acids. Would this conflict with the DS diet, where a higher-fat diet is encouraged? My surgeon takes the gall bladder out during the DS surgery.

5) I haven’t given it much thought of late, but in 1999 I had a diagnosis of gastroparesis (delayed gastric emptying) by a D.O./allergist who was a bit of a quack. Could this diagnosis be a problem with the DS if I have vagus nerve damage? I dunno.

6) I currently have a BMI of 38; would a DS surgeon revise me now or want to wait until I have a BMI closer to 50? For many insurances, a BMI of 35 and comorbidities are what you need.

7) My husband says that, if it's at all possible, we’ll get the DS before the end of the year since we’ve already met the deductible. Would anyone mind sharing what the complete amount you were charged to revise the band to a DS? I don't know because insurance paid. It was probably a few hundred bucks.

[Band to DS]

Okay, I'm back. Here's my story & some answers to your questions.

I got a lap band in 2008 because my surgeon told me that the band had excellent long-term results without all the risks of gastric bypass. (What a load of crap!) My initial BMI was 46. Back then, I was terrified of malabsorption & thought I would do great with the band.

Unfortunately, I had problems with my band right from the beginning. I lost 30-40 pounds during the first few months after surgery, not because the band was working as intended but because I couldn't eat. I had all the usual problems: severe heartburn, unable to eat healthy foods because they got stuck, puking, sliming, etc. I just dealt with it because I thought it was normal. Eventually, I started eating "slider" foods and my weight loss stopped. I was embarassed & ashamed so I didn't seek help.

Then about two years ago, I started having trouble swallowing. The only way I could get food to go down was to drink tons of water after each bite. I don't know why, but I just accepted that as normal too. One morning while I was on vacation, I was afraid to start eating breakfast because the waitress hadn't brought me a glass of water yet. It was a real turning point for me. Within a month, I started researching my options for a revision.

mrsgmo said:

1) I haven’t had diet motivation for quite some time and know that all surgeries require some sort of low carb diet post-op, especially the DS. I tried Protein Power in 1996 (lost 20 lbs. then gained) and then Atkins/Bernstein from 1997-2002 (lost 115 lbs. then gained). On Atkins, I would do OK for weeks and then go nuts on carbs for a weekend. How would the DS work for someone who can’t stick with anything perfectly? Did anyone follow a low-carb diet for a long time, lose loads of weight and then gain it back before their DS?

After the DS, some people get lucky & seem to lose tons of weight without having to watch their diet carefully. Others struggle to stay very low carb. I've read about people who started gaining weight 2-3 years after surgery because they were eating lots of carbs. (I've never heard of anyone gaining back all of their weight.) I'm pretty sure they're able to start losing again when they restrict their carb intake.

mrsgmo said:

2) Every time I do low carb for long enough, my diabetes goes into remission. I’ve read about the DS’s 98% cure rate and heard someone say that the DS changes metabolism to correct insulin resistance. Is this strictly due to the low carb diet, the DS, or both combined?

My understanding is that the intestinal portion of the surgery is what changes your metabolism and you'll start seeing the benefits before you even leave the hospital.

mrsgmo said:

3) Most band revisions seem to be done on folks who either never got to goal or had serious complications. I did hit a goal weight of 152 lbs. but could only maintain it for four months and the only complication I've had is gastritis for the last three years. Would a surgeon consider me noncompliant and refuse to do a DS?

There aren't very many surgeons who are qualified to perform the DS. Those that do are a special group of people and in my opinion, they're less likely to "blame the patient." I was worried about that too.

As Larra said, your insurance company is another matter. You'll have to check your policy & see what they require. I had to meet a general set of requirements to qualify for weight loss surgery, another set of requirements to qualify for a revision, & a third set of requirements for the DS.

mrsgmo said:

4) My gall bladder is full of stones and I have attackes 3-4 times each month. I’ve read that many who have theirs removed are put on a low-fat diet and prescribed Actigall or bile acids. Would this conflict with the DS diet, where a higher-fat diet is encouraged?

Most surgeons remove the gall bladder during the DS. I've never heard of anyone having issues because of that.

mrsgmo said:

5) I haven’t given it much thought of late, but in 1999 I had a diagnosis of gastroparesis (delayed gastric emptying) by a D.O./allergist who was a bit of a quack. Could this diagnosis be a problem with the DS if I have vagus nerve damage?

This is something that you'll have to ask your surgeon.

mrsgmo said:

6) I currently have a BMI of 38; would a DS surgeon revise me now or want to wait until I have a BMI closer to 50?

Most DS surgeons require their patients to meet the NIH guidelines for WLS. That means you either (1) have a BMI of 40 or greater OR (2) have a BMI of 35 or greater with at least two serious comorbidities. I don't think any doctor would want you to gain more weight before having surgery. That just puts you at greater risk for complications.

mrsgmo said:

7) My husband says that, if it's at all possible, we’ll get the DS before the end of the year since we’ve already met the deductible. Would anyone mind sharing what the complete amount you were charged to revise the band to a DS?

The amount that you'll pay is based on your insurance, so it will be different for everyone. You need to read through your policy for that information. (My insurance sucks, so I'll have to pay almost $5000.) If you pay for surgery yourself instead of using insurance, most surgeons have a "self pay" rate. If you decide to go that route & are able to travel, see Diana's post on the Main board for a great deal.

Let me know if you have any other questions!

[Band to DS]

Link to Diana's post:

weightlosssurgery.proboards.com/index.cgi?action=display&board=general&thread=3536&page=1#50574

[MrsGMO]

The band is a piece of shit. It is--and I take great pride in being the person who coined this phrase--A Diet With A Choke Chain. And the overwhelming majority of people who get the band suffer through much of what you have described. YOU did not fail...except maybe by trusting the guy who sold you the band. It should NEVER have been placed in someone with a BMI of 53.5. In fact, research says that it should probably never be placed in someone with a BMI of 46 or higher...unless you don't mind "failing" and having another surgery to take it out.

Thank you for your thoughts. I won't comment on everything, but regarding the choke chain, I've been quoting that for a while and am glad I can now give credit where credit is due.

I will admit I like being told I didn't fail. Unfortunately, DH and I liked the surgeon first and believed what he steered us into. Seven years ago, he only did Bands and said "stay away from the RNY!" Now, he does the RNY, the Sleeve plus revisions (but no DS yet). I now take great stock in the saying, "pick your surgery first, then your surgeon."

You may not get to a "perfect" weight. ... I've never followed any diet for a long time. That's why I needed the DS.

I got so close to 145 lbs. (size 8) in 2010 that I will shoot for that. It would be so incredible to maintain that while eating a high-protein diet like the one I enjoyed many years ago. In fact, it was the only diet I ever liked; I just had to also exercise like a fiend to keep the weight off! Anyway, it sounds like maybe the DS can be forgiving if I stray a little into carb-o-land at the holidays, unlike Atkins was. I gained a pound a day every time I fell of the wagon.

It's not due to the diet. Someone who understands this better can tell you more, but many leave the hospital no longer diabetic. It's magic.

You don't know how much I want to believe that ... and need for it to happen.

For many insurances, a BMI of 35 and comorbidities are what you need.

Check and double-check.

My husband says that, if it's at all possible, we’ll get the DS before the end of the year since we’ve already met the deductible. Would anyone mind sharing what the complete amount you were charged to revise the band to a DS? I don't know because insurance paid. It was probably a few hundred bucks.

Very encouraging, thank you!

[MrsGMO]

Thank you very much for sharing your story. I received a similar story about excellent long-term results from my surgeon, too. However, the best long-term numbers I could find on the web were 50% EWL with a 22% diabetic cure rate. Major suckage.

I had all the usual problems: severe heartburn, unable to eat healthy foods because they got stuck, puking, sliming, etc. I just dealt with it because I thought it was normal. Eventually, I started eating "slider" foods and my weight loss stopped. I was embarassed & ashamed so I didn't seek help.

I feel for you! This is where I am now. Combined with my massive weight gain (60 lbs. in a year), I have to ask my doc to put me back on old meds again (Glucophage, Lipitor, Benicar) and explain "band fail" when all she will see is "patient fail." I completely understand the overwhelming shame and guilt.

After the DS, some people get lucky & seem to lose tons of weight without having to watch their diet carefully. Others struggle to stay very low carb. I've read about people who started gaining weight 2-3 years after surgery because they were eating lots of carbs. (I've never heard of anyone gaining back all of their weight.) I'm pretty sure they're able to start losing again when they restrict their carb intake.

This is good news because I know I won't be one of the lucky ones in any way. I just want to have more odds in my favor and a doable safety net that will pick me up when I fail again. The band seems to have stopped working now and I cannot seem to get proper restriction at all. Fills and unfills just aren't working like they used to.

My understanding is that the intestinal portion of the surgery is what changes your metabolism and you'll start seeing the benefits before you even leave the hospital.

Music to my ears! My metabolism has been completely shot to hell after doing some form of low-calorie dieting since I was 9 or 10 (followed by high-calorie rebounding, of course.)

My low-carbing days 10 years ago were great at first but it became such an incredible struggle. I did aerobic exercise 4-5 hrs./week and kept my carbs around 30-50/day for as long as possible. After a while I'd only lose 2 pounds a month and was so tired all the time. I'd fall off the wagon for only a weekend and it would wipe out an entire month's progress and then some. I'm hoping the DS will eliminate this pattern and not be just another low-carb diet for me to add to my repertoire.

You'll have to check your policy & see what they require. ... Most DS surgeons require their patients to meet the NIH guidelines for WLS. That means you either (1) have a BMI of 40 or greater OR (2) have a BMI of 35 or greater with at least two serious comorbidities. I don't think any doctor would want you to gain more weight before having surgery. That just puts you at greater risk for complications.

I had the old co-morbs come back (diabetes, high cholest., hbp), so I guess it's not all bad.

The amount that you'll pay is based on your insurance, so it will be different for everyone. You need to read through your policy for that information. (My insurance sucks, so I'll have to pay almost $5000.) If you pay for surgery yourself instead of using insurance, most surgeons have a "self pay" rate. If you decide to go that route & are able to travel, see Diana's post on the Main board for a great deal.

Dr. Stewart, the surgeon I'm praying to get a DS from, has a self-pay DS price of $22,750. I'm guessing it might be closer to $25K for a self-pay band revision, which would cripple us financially. However, Dr. Stewart's site states that he does take our provider (UHC) so I'll ask DH to look into our policy through his employer.

Thank you so much for sharing your journey and insight. And the best of luck to you as you have your revision soon. I'll be rooting for you!

[Band to DS]

Thanks for your good wishes! I hope everything goes well as you start the process toward a revision.

Shelli