RNY takedown or Reversal

ReverseRNY
on 5/7/12 11:25 pm
In 2001 I had a lap RNY. Now in 2012 I want it reversed, not revised. I don't regret having it done for I was 354 pounds at the time, on BIPAP, with severe back pain and leg ulcers. I was a member of obesityhelp back then and did lots of research and waited a couple of years before I actually had it down.

I lost down to 254 in the first year. Then lost down to 230. Then I slowly crept back up to 285 and now I am back down to 260 and still losing on a ketogenic paleo diet with the help of a physician health coach and lab monitoring.

I have had trouble with increasing brain fog over the last several years which was thought to be maybe ADHD but now they are quite sure what it is. Went on Prozac to help but had to drop that because of side effects. Cleaning up my diet made a difference. No artificial, low fat anything, no sugar at all, no grains. I have chronic horrible anemia and Vit D deficience and other poor labs.  I am tired of feeling low energy and foggy regardless of supplements. I want to truly be healthy again and that means someday I am going to have to reverse the RNY so I can eat whole, non processed healthy foods. Fortunately, I was the 5th person my surgeon did and he was very conservative, bypassing only 13 inches. He does twice that amount now.

If anyone can point me to some resource on this site that I could do some reading on I would be truly grateful. This site sure has changed in the last 10 years.

Best to you....
seekingsusan
on 5/8/12 5:21 am - Livermore, CA
DS on 05/24/12
Not sure about reversals, but if it were me, I'd contact a VERY good DS revision Doc to fix what the RNY Doc did. It's a complex procedure. Please get the best you can for it. This is not something your RNY Doc should be touching.

Have you had a recent Sleep Study? When I was first diagnosed with OSA, one of my symptoms was brain fog. Lack of oxygen will do that to you. But then so will crappy labs, depending on which ones are tanked.

Best of Luck getting resolution.
S~

P.S. There is another site now, PM me if you'd like details.
ReverseRNY
on 5/8/12 10:13 am
Thank you for answering. I had a sleep study prior to RNY and they wanted to trach me my score was so bad.

After RNY, about a year later, I weaned myself off the BIPAP and Oxygen. Lately, within the last couple of years I have started snoring again. I am no where near like I was prior to RNY.

I don't want to revise to a DS. I don't want something more restrictive.I want to reverse the RNY to what it was like preop. Docs can do it but it is an open procedure.  

A reversal can be done because nothing is removed in the RNY but it has to be re-attached and the staples taken out.

My labs aren't perfect but they could be a whole lot better and the RNY is preventing that. I have leaky gut and my malabsorption issues will probably kill me eventually. I know that for these kinds of procedures we are looking for more malabsorption. That, after11 years post op,is what I don't want. It is the malabsorption that is causing my brain fog and at one time which was thought to be ADHD. My physician thinks the brain fog problems are from the malabsorption. I have aged in the last couple of years in appearance too and I am tired of being so low energy all the time.

I will PM you.

Thanks,
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Roux-en-y
on 10/23/16 2:12 pm

No doctor will give a reversal. My ruen-y gastric bypass seemed great but turned into a nightmare. Do you know where i can get a reversal?

Amy Farrah Fowler
on 5/9/12 3:34 pm
I think you may need a thorough set of labs. People say their labs were fine on here almost daily, but when they post the numbers, they almost never have COMPLETE labs. So, if you haven't had recent very complete labs, like they drew over 20 vials of blood from you, those are what you need. Vitalady has a complete list of what most RNY folks should get, and you need a doctor that can have those drawn, and follow up adequately.

Most people I know with RNY also get iron infusions, since they don't absorb it well. Most folks with RNY and especially DS have trouble with D. Are you taking the dry formulation of D3 (NOT the prescription 50k stuff, as that doesn't work well for us, we don't absorb it) and not anything you can buy at the store. The Dry D comes in 50,000 (yes, that was 50K, not 5K) tiny capsules, and many of us take up to 4 or 5 a day. Some of the things that happen from vitamin deficiency can damage us permanently or kill, so it's not something to be taken lightly.

We know so much more about supplementation in the years since you have had or original RNY, and even still, so many good surgeons have crappy post op advice. It really sounds like you could do better with better following of thorough labs, and more thorough supplementation, but you need some experts to looks at your numbers. A hematologist would be a good place to start, and if I were you, I'd contact Vitalady. She's better than any nut I've talked to.
larra
on 5/10/12 11:05 am - bay area, CA

I'm not sure exactly what you are looking for here, whether just sympathy type support or advice and suggestions. I'll try to offer some of each.
     First, I am so very sorry you are going through all this! I hope that the measures you are already taking will help you to feel better and think better.
     Next, I would say that you must proceed very carefully from here, esp since you acknowledge you are suffering from brain fog, among other problems. Brain fog could also be affecting how you look at this decision and at your options.
     Regarding RNY reversal, you are right that technically, it can be done. However, it's a huge operation, not just because it's done open, but because the stomach has to be put back together, the small intestine has to be detached from the stomach and put back together...you get the idea. RNY reversal is rarely done, and usually only for life threatening complications that can't be remedied any other way. And once that's done, you will be back where you started as far as having a weight loss tool to help you. Given that you started at a very high weight with significant (sounds like life threatening sleep apnea) comorbidities, is this really the best plan for you? Even though you are now taking steps to get your health under control, we all have experience with having periods, even months, or "eating right" that somehow don't last forever.
      Regarding your brain fog - I could of course be wrong, but I doubt it's from malabsorption, unless you mean malabsorption of some micronutrient. There just isn't significant caloric malabsorption with RNY, esp with what you describe as such a conservative RNY. If you mean some vitamin or mineral deficiency, these can be evaluated with a full set of labs, and almost always corrected. This is true even with operations with far greater malabsorption, by which I mean the DS.  Again, I could be wrong, but I would be very concerned that sleep apnea is the cause of your brain fog, since you are snoring again. Surely not as severe as before your RNY, but enough to deprive your brain of oxygen during sleep and cause daytime brain fog and/or sleepiness. A sleep study would settle the issue, and also establish whether or not CPAP would help.
     And as far as what to do now, I would recommend you keep an open mind to all reasonable options. In particular, I would recommend you have at least a phone consult with one of the experienced surgeons who does RNY to DS conversions. Yes, you would have more malabsorption, but it would be different malabsorption, with more malabsorption of fat soluble vitamins (which we handle by consuming "dry" versions of these vitamins) and less malabsorption of iron and B vitamins. And you mentioned that you don't want a smaller stomach and more restriction, but with the DS we have a LARGER sleeve stomach and LESS restriction than with RNY. 
     So what I'm trying to say in a very longwinded way is that I think you need more information and more accurate information but about yourself (sleep study, full labs) and about your options, esp conversion to the DS rather than RNY reversal.
    whatever you do, I wish you the best, and hope your problems will be resolved.

Larra
    

ReverseRNY
on 5/10/12 2:09 pm
No, not sympathy. Looking for info.  Thank you. :) I came here looking to talk to people who have had reversals, not revisions and someone suggested I come to this part of the forum. This forum is a great place. I started here back in the late 90s doing research. I wish I could remember my original name and password from then but I quit coming about a year after I had the RNY.

Actually, since I changed my diet to a ketogenic paleo diet in February and started a different kind of supplementation program designed by a surgeon my health has much improved over the last 3 months. I just had a boatload of labs drawn today and there is much improvement showing from the labs that I had drawn in January since I went ketogenic paleo. Also I have found that all grains are bad for me, all sugar no matter what kind cause me problems. I used to have bad dumping syndrome in the early years but I have grown out of that since my vagus nerve has regrown back together. (That is one of the reasons why weight loss slows down for people is because the vagus nerve heals which is severed during the bypass). I more have a leaky gut problem now. My diet is about 70% saturated fat with almost 30% protein and minimal carbs. It has done phenomenal things for my health.

Since going paleo I have almost lost all the weight that I put on post op, (40 pounds) and continue to loose slowly, my hair is growing back like gangbusters, there is no more stiffness in my joints, and my brain is working better as proven by my increased work performance and evaluations. My cravings are almost gone which shows how much healing has taken place. But,  my brain is still not optimal like I want it to be.  Nor is my physiology. It is getting there. Reversal is the only thing that will take care of this I believe. It will be a year or two before I go thru it if I do. I want to regain as much health as I can before I decide to do it.

I am chronically low in vit D3 and must take supplementation to keep it up. I take 30,000 IU a day for the last two months. I used to take 2K. I feel better. Just had my D3 drawn so I am waiting for that to come back. My ferritin level keeps dropping even with supplementation. A few years ago I had 3 bags of Iron replacement to treat life threatening anemia. My ferritin level was 3. I also have difficulties with auditory processing and hearing which came about in the last couple of years. This is thought to be the long term result of malabsorption of macro and micro nutrients.

I was being followed by an endocrinologist for gastric bypass maintenance but he is not aware of how lab values can be sub normal and have a profound effect on physiology. So, I am ordering and running my own labs with the help of a surgeon who is my health coach. He has forgotten more about nutrition and supplementation than most nutritionists know. I am very fortunate to have him.

I have a referral for a sleep study. Hopefully, I will get that done this month.

That is why I came here to explore about reversal. If it is too harsh to get one I will stick with my RNY. :) I can't eat optimally or absorb optimally because my stomach on a good day only holds a cup of food. I used to graze all day long because I was afraid I was not getting enough macronutrients. Eating just three meals a day that are very small does not meet physiology needs for me.I need a larger reservoir to hold normal amounts of food. My appetitie is almost gone since this new way of paleo nutrition.

After my first year of the RNY, I was averaging about 500 calories a day. My Heart rate dropped in the 50s, my BP was below 100/60s and my body temp quit registering. Honestly, I was starving my body and that's OK for a bout a year but not for a lifetime.

My rny surgeon does revisions, etc. He's probably pretty good at them now since I was one of his first patients in 2001. He's a good man. The RNY saved my life. I was over 350 pounds at one time. But with all my research I have been doing and with a neurosurgeon who is guiding my continued recovery some day I hoped to have it reversed. It'll be difficult for sure because he told me he put a double layer of staples in.  :) If it is too risky then I will stay with my RNY.

I remember when Vitalady started her site. I used to buy from her. Glad to hear she is still in business after all these years.

I am probably not appropriate for this part of the forum but I didn't know where else to go. So this reversal may not be happening very much but I am willing to be one of the early ones. I have been an RN for over 20 years so I do have a good background on physiology.

Thanks again so much for your time. If anyone could direct me to a different forum that would be wonderful.
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larra
on 5/11/12 12:21 am - bay area, CA
I'm glad you're feeling better. It sounds like your health is improving, and that you are getting more comprehensive labs done and also the sleep study. I think all these things can only help you.
      There is nothing wrong with your being on a "revision" forum. You won't be able to find a "reversal" forum because RNY reversals are so rarely done. I understand your desire to communicate with someone who has had a reversal, but there are so few done that I doubt you will find anyone. I don't know of any other forums where you would be more likely to find anyone with an RNY reversal.
      If your D is still low and not improving, or not improving fast enough, I would strongly recommend the "dry" D that you can purchase from Vitalady (or directly from the manufacturer, but her prices are better). It is 50,000 units of dry D. It works well for people with the DS and should work well for you also. I hope you are also checking the other fat soluble vitamins, esp A and K, and these can also be supplemented more effectively in the "dry" form.
     I do think you have some misinformation regarding the vagus nerves. They are NOT routinely severed during RNY, at least not the main branches. It is possible to accidently severe then while forming the RNY pouch, and if this happens, they do not grow back together. There is no way clinically for you to tell whether or not they are intact because you are not using your pyloric valve - they control the opening and closing of the pyloric valve, but yours is bypassed with your RNY. 
    Also, the vagus nerves, or lack thereof, are not involved in the mechanism of dumping. Dumping occurs in some (not all) patients with RNY because of rapid passage of certain foods directly from the pouch into the small intestine. For some people it's fats, for many it's sugars, but either way, that's the mechanism. Some people with dumping do find it lessens as time goes on, others learn what foods cause it, and how much, and either avoid those foods or limit the amount to just under what will cause dumping symptoms. But vagus nerves have nothing to do with this problem. In the DS world, we've met some people with such severe dumping, even on "healthy" foods, that they required revision to DS to relieve this problem.
     I hope your health will continue to improve, but I also hope you will keep an open mind to all your options. Reversal is NOT your only option, revision to the DS would also address the issues you have, let you eat more normally, and let you continue to have a weight loss and weight maintainence tool to help you along. Think about it.

Larra
     
ReverseRNY
on 5/11/12 10:46 am, edited 5/11/12 11:22 am
Thanks, Larra. I was just doing some reading where in the UK, after RNY is done and the weight is lost that in one to two years a takedown reversal is done so there are no long term nutritional deficiencies. It may be in the US it is not a common procedure but in other countries it is not so rare.

I have all the post gastric bypass labs done on a yearly  or more basis. I usually have my D3 and Iron studies labs drawn as needed, usually quarterly, to see whether I need to updose or down dose what I am taking. I don't want to dose at all anymore. I take a boat load of other type of supplement too. It's a PIA sometimes because eating supplements can take up all the room I need for food. LOL

Regarding the RNY and vagus nerve, I finished watching a little while ago a you tube video of a bariatric surgeon saying he routinely cuts the vagus nerve. http://www.youtube.com/watch?v=JEgq9eJC7oE

Cutting the vagus nerve decreases ghrelin, decreases hunger, causes weight loss. It takes about a year for the nerve to regenerate and that is one of the reason why hunger returns and weight loss stops.

Nerves do regenerate and it takes about a year. My health coach is a neurosurgeon who has a busy practice and he tells me that nerves do regenerate. For some nerves the regeneration is different for the category that they are. http://en.wikipedia.org/wiki/Neuroregeneration The whole stomach is innervated by the vagus nerve branches.

Dumping syndrome is recognized risk of having a vagotomy, the severing of the vagus nerve which is used to treat high acidity in the stomach.  http://articles.latimes.com/2008/jun/09/health/he-implant9

Fast transit times of food is another reason. I don't have fast transit times anymore.

I am now looking at research that says that obesity is a symptom of systemic cellular inflammation in the body as are other diseases like diabetes.http://en.wikipedia.org/wiki/Inflammation#Cellular_component

This cellular inflammation is a complex physiological process that I am only starting to wrap my head around and how it creates obesity. To me, having come this far in over 10 years and having myself as my own n=1 experiment I want to reverse the inflammation not have more surgery.

Like I have said before, the RNY saved my life. I would probably have been dead in a couple of years if I hadn't had it. Now it is time for a change that doesn't involve another type of WLS surgery.

Thanks again for your kindness.

I did want to add the labs that I should be getting as I fix my physiology but who has that kind of money? I am getting some of these done but not all. I also have the gastric bypass labs done too. I just put them here as an example.

Complete Blood Count (CBC) With Differential CPT Code: 85025

Metabolic Panel (14), Comprehensive CPT Code: 80053

Osmolality,serum CPT Code: 83930
Osmolality, Body Fluid CPT Code: 84999
Urinalysis, Complete With Microscopic Examination CPT Code: 81001
2
Hepatic Function Panel (7) CPT Code: 80076
C-Reactive Protein (CRP), High Sensitivity (Cardiac Risk Assessment) CPT Code: 86141

Vitamin D, 25-Hydroxy CPT Code: 82306
Insulin, Free and Total, Serum CPT Code: 83525; 83527
C-Peptide, Serum CPT Code: 84681

Hemoglobin (Hb) A1c CPT Code: 83036
3
Ferritin, Serum CPT Code: 82728
Iron and Total Iron-binding Capacity (TIBC) CPT Code: 83540; 83550
4
Homocyst(e)ine, Plasma CPT Code: 83090
Lipoprotein Subfractionation Profile CPT Code: 83701; 84478
5
Cortisol CPT Code: 82533
Dehydroepiandrosterone (DHEA) Sulfate CPT Code: 82627
Dihydrotestosterone (DHT) CPT Code: 82651
Estradiol CPT Code: 82670
Estrogens, Total CPT Code: 82672
Follicle-stimulating Hormone (FSH), Serum CPT Code: 83001

Growth Hormone-binding Protein CPT Code: 83519

Insulin-like Growth Factor 1 (IGF-1) CPT Code: 84305
Luteinizing Hormone (LH), Serum CPT Code: 83002
Pregnenolone, Mass Spectrometry CPT Code: 84140
Progesterone CPT Code: 84144
Prostate-specific Antigen (PSA), Serum CPT Code: 84153
Sex Hormone-binding Globulin, Serum CPT Code: 84270

Testosterone, Free (Direct), Serum With Total Testosterone CPT Code: 84402; 84403
Prolactin CPT Code: 84146
6
Thytropin Releasing Hormone CPT Code: 83519; 84999
Thyroid-stimulating Hormone (TSH) CPT Code: 84443

Thyroxine (T4), Free, Direct, Serum CPT Code: 84439

T3 Uptake CPT Code: 84479
Reverse T3 CPT Code: 84482

Triiodothyronine (T3), Free, Serum CPT Code: 84481

Thyroxine-binding Globulin (TBG), Serum CPT Code: 84442

Thyroid Peroxidase (TPO) Antibodies CPT Code: 86376

Thyroid Antithyroglobulin Antibody CPT Code: 86800


I don't know why this stuff below keeps showing up. Even when I edit it out it keeps appearing below.. Sigh

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larra
on 5/11/12 1:04 pm - bay area, CA
If you have any references of links for info about RNY reversals being commonly done in the UK, or for that matter anywhere else, I'd love to see it. I've never heard of such a practice. It would put people at significant operative risk to avoid what are usually very preventable or treatable nutritional issues. Granted, you personally have had way more nutritional problems than most RNY patients, but the reality is that with proper supplementation, most people do well nutritionally with RNY. In addition, once the RNY is reversed, there is nothing to prevent these folks from regaining all the weight they have lost - and given that we're talking about the UK, which has socialized medicine, I just can't picture their medical program paying for lots of very expensive, major surgeries. So I would love to see where this info came from. I am not questioning your honesty, but I'm very dubious about the accuracy of this information. It doesn't make sense either medically or financially.
     Regarding the vagus nerves, there may be a surgeon who intentionally cuts them, but most don't. Do nerves regenerate? Yes, you are right. The smaller branches can regenerate and reattach themselves when cut, though they don't always get it exactly right. But the big major vagus nerves up at the esophagus and top of the stomach, where the pouch is made? No, they do not reattach themselves.
     And as to why someone might get dumping after the vagus nerves are cut, well, that's because that operation is combined with a pyloroplasty, where the pylorus is enlarged (there is more than one way to do this, I won't get into details here), or with a gastrojejunostomy, or with some other way for food to exit the stomach, because the pylorus won't work after a vagotomy. And it is that other part of the operation, the part necessitated by the cutting of the vagus nerves, that causes dumping.
     On the inflammation stuff, yes, there is new info about that all the time, and it does appear that this is at least part of the obesity picture. 
    
Larra
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