Dances with DS

Been thinking about a recent thread at WLSinfo. Someone posted that her RNY surgery had failed and that as her surgeon could find no technical reason for it he was not going to revise her. Of course, she felt devastated and a failure. She admits to eating incorrectly, which is very honest and brave. It must be worrying her very hugely if she took the risk of fessing up. It was clear she needed the support so much, she was willing to take that risk of a potentially painful lashback. What ensued in responses was long but interesting. Some members gave her total support and others could not understand her lack of self control and spoke their views. That’s the basics.

I’m not going into it here, you can read about there if you wish, but I wished I could support my peers in a way that extends beyond just my empathy (which they already have when the chips are down). In a way that could be more tangible. However I felt I didn’t want to post my response there because it’s soooo long, plus I honestly have profound fears about coming across as another lofty expert or little miss perfection. Which I am not. But that’s really my problem isn’t it!

What was posted there is not uncommon. I think most of us have seen posts like this with all surgery types. It worries me from many angles. I read it wondering about where we could be going as a community? And if somehow we could change the course of what looks like destiny for many people, without any judgement at all. I know we derail off our surgeries from time to time, we are hardly perfect else we wouldn’t have had our surgeries in the first place. But we also know we must comply. Sometimes it’s a balance between complying, difficult life circumstances and our surgical limitations or lack of them. But I think what is seldom factored into the equation is that knowing is a long leap from actually understanding. And understanding is a long leap away from actually doing. And inbetween those leaps that look so revoltingly simple on paper, there may be various personal factors and perceptions that further block the way. It’s just so not frikkin’ simple is it!

Some Bandsters and some RNYers, don’t get a major metabolic effect as Dsers do. Now, I’m fully aware there a few DSers also in the same boat. However the ratio’s do seem less. Also the impact of adaptation seems to come a little later.

However in light of my own recent experience with eating carbs I believe if I continued down that path with good intentions (to gain weight) or not , I’d risk disturbing even the toughest metabolic effect WLS can offer surgically today.

It’s very difficult to understand the ramifications of metabolic breakdown, if there hasn’t been enough time to gain advantage over it. For starters, you don’t know what it is until you have experienced what it is not.

For example: When I was morbidly obese, I didn’t know what was happening because it just evolved out of childhood really. Children don’t have the capacity to dwell on these things. Also the advice from those in the ‘know’ was tarnished with a lot of misinformation. If you go and research the USDA’s pyramid for healthy eating fiasco, you’ll get what I mean. It’s too lengthy to go into here, but just let’s say seems they had very vested economic interests in giving out that info about what a ’so called’ balanced diet is.

With my DS for 6 years I have been listening to it and working with it the best I can. Not always perfectly by any means. And I have had a metabolic balance that again, is not perfect, but that actually works well enough to give me the understanding I need when it’s clear it is starting to wobble. In short I know what balance is(in my context) metabolically, as oppossed to metabolic wobbly. So I have some hope of addressing it before it becomes entrenched. If I constantly was dealing with a metabolic wobble I would be conditioned to that. I’d feel it I am sure ( hard not too) but I wouldn’t understand it and I wouldn’t be able to address it.

The RNY must be particulary difficult for some people because often year one goes racingly well with excellent weigh loss. Hopes and relief run high. Year two can be a bit more of a struggle. Year three is where it looks like things can take a real nosedive. The body starts to compensate and it can indeed affect a surgeries performance. It can happen with little gap to catch one’s breath between.

Let’s hypothesize. Let’s add to that, the fact that the dumping many relied on can pretty much disappear and the road gets rockier. Add to that, that food choices are still limited and the crappola goes down easier than the right foods. This can inspire feelings of not ‘having enough willpower’ which may create devastating emotional stress and possibly depression. Add to that, the fact that it’s been proven that under stress, the brain releases chemicals that can cause weight gain.

Next to consider is that one may have lost muscle mass along with the pounds. Muscle burns fat and if we lose it, we can lose a vital advantage that directly affects calorie intake, effectively lowering it and putting us at risk of regain. Now one struggles with a limited intake as is, and to cap it all, regain. At this stage we may start to lose our bodies natural signalling system all over again, leading to more even more regain and a vicious circle is born. That’s just to begin with. Now add consistent simple carbs intake to that, and the long term picture has to be a recipe for disaster.

The advice many RNYers get is : Eat your protein (if they even get that) and exercise. But does anyone explain why???

This makes me irate sometimes. I think it is just like the days we were told to diet and exercise and away you go. Ho hum. I don’t think so. And not just this, but a complex surgery is being given…and it’s not just about losing weight, a persons longer term health is not dependent only on losing the weight.

It’s a complex web of biological and hormonal onslaught from every angle. To push through all of this is extremely difficult and confusing if one doesn’t understand, even marginally, how it all hangs together. And the problem is we don’t really, which leaves one where? Basically in a mess sometimes. A mess that is not one’s own wilful doing anymore than obesity was. If we understood everything, obesity would be solved already.

BUT we do have a little bit more understanding than we did even a few years ago. It’s just a smidgen and we have a lot more to learn. But we must work that smidgen. Everyday. That goes for the lot of us, DSers too.

So over the next couple of blogs I’m going to research more and tackle some of our WLS issues head on. I might miss the boat, what I know about the RNY is not existential. I don’t live it. But I feel strongly in some cases a revision is preventable and if we can prevent it we must give it a good try. Some RNYers do very well longerterm and very few seem to get total regain. The worst stats I have read are longerterm overall regains of 50%. That’s the worst and it was only one abstract, by no means conclusive . More commonly I read of excess weightloss after a few years totalling 60% upwards. Effectively that means the surgery can & does continue to work for the majority of people. If longer term RNYers share their experiences it may help the newbies possibly optimize this % even more.

However I also feel that sometimes a revision is the most viable option. No judgement if you are going this route from me. But consider the risks carefully. Ask yourself if you could give your RNY one last shot? You might be suprised to find it may still work.

If you are a relative newbie and you read the forums you probably sometimes despair a little. But you have the edge and if you get onto it early in the day you can keep that edge alive.

So over the next few blogs I am going to take a deep breath and dive in there. How to get the edge - with all our surgeries. If you are interested, pop in. Take what you can use and chuck the rest.

I wrote this post in 2005! I still think it’s true.

Thought I’d flag it up here again. To remind me. To keep me questing for more knowledge even if I almost can’t bear to read that knowledge sometimes and wonder if I am the worlds last pessimist! If I am I must be an optimistic pessimist because for all I write, I am happy with my DS by my side.

I’ll go on being joyful about the day I live in. With my ‘normal-ish’ eating habits. With my body that can dance. With my energy. With my husband and children and my little animals Zen-Zen & Petal & Smiler my mouse. Partly, I will follow old poetry too. But just partly! In those days you only worried about what the elements would throw at you, it’s different now! And I still haven’t closed those books yet….one day!
Carpe Diem!
Leuconoe, don’t ask — it’s dangerous to know what end the gods will give me or you. Don’t play with Babylonian fortune-telling either. Better just deal with whatever comes your way. Whether you’ll see several more winters or whether the last one Jupiter gives you is the one even now pelting the rocks on the shore with the waves Tyrrhenum: be smart, drink your wine. Scale back your long hopes to a short period. Even as we speak, envious time is running away from us. Seize the day, trusting little in the future.

2005:

Brief notes from experimentus DS. I feel that way of late - a trawl around the internet often makes me wonder if we actually know what we are in for longerterm. Last night I read an abstract about what happens to rats when the gastrin & grehlin portions of the stomach is removed - interesting postulations about the potential role that grehlin might play in calcium metabolism. Mmmmm….

Recently I feel chilled about some developments out there in Bariatric planet. I wonder if we really have very much knowledge at all and my little joke of being experimentus humanus might just not be so far from the truth? First Chill and one that has shadowed me a long long time.

Second chill - bariatric surgery keeps on getting more & more lucrative. I am afraid of the possibilities of ‘ low risk fast fixes ‘ with no real regard for the patients best longerterm interests.

You know when JIB patients had the JIB how could they have known the consequences? I understand how they dreamed of a bright new future and how awful it must have been when the guiding star faded.

When the ‘Gastroplasty’ patients had their stomach stapling they dreamed the weightloss would be forever and ever.

I know many peeps at 3/4 years out and we know with a solid surety our obesity is ever knocking at our door. If my surgery was taken down I know I would be in deep waters.

Some things I have learnt:

it’s a lifelong process
don’t say it’s gone forever
never say ‘I won’t revise’
5 years is not a long time in the overall lifetime picture
In short - never say never….

One day I will close the books. The more I read the less I know.

Maybe, all things considered, that is a good thing.

I know I’m fixating. I don’t like doing it either. Usually (but not always) it’s because my alarm bells are ringing too loud for my own good.

I’m not feeling like God’s happy bunny about all the latest press hype about diabetes being ‘cured’. A year ago I would have bought it and I did in fact. Now as our knowledge grows I think it is not right. We need some real insight into hypoglycemia FIRST. This cure idea may be temporary. It may more dangerously, lull people who desperately want to believe it, into not watching what they put in their mouths anymore. Or to plump for WLS before doing ALL the research. It’s also one thing to say ‘what you put in your mouth may cause regain of weight’ it’s another to say ‘what you put in your mouth might cause serious longer term damage.’

I know I will possibly be accused of ’scare mongering’. Tough. I WISH I could be celebrating the suppossed cure too. I hope I still will have the opportunity in the future. I also want only the best press for WLS which has been demonized considerably in the past by some, but not at the price of blissfully temporary denial…and a big crash for our surgeries later on. So for now I’m going to think of it as putting diabetes into remission.

There are many other amazing things about WLS to celebrate on the overall health front not least watching the fat melt away…

So - let’s all get on with it and stop eating crappola except in very small bites. Beat the possibility of hypoglycemia in it’s tracks, get a good skin back, lose more weight if you need too and feel ‘the energy’ come home again. It’s not such a hard loss to say goodbye to it once it’s become a habit. I promise you if you feel it has the devil’s hold on you, that once you break the hold you will find much more pleasure in a decent plate of healthful seriously tasty food. I’ve been there specially in the first years with my DS. It does take time…but a year of consistent practise of ‘right’ eating will take you to a place where it’s very easy to walk straight past the chippie on your way home to a delicious home cooked plate of succulent spicy tender chicken curry on a bed of nutty wild rice with a little basmati too. With coconut banana on the side. And Raita, a carrot one please…omg I am getting carried away here - lol  

So what’s ‘right’ eating once you are past the newbie phases?:

A variety of protein in the right proportion for your surgery

Diary products (low fat for RNY & Bandsters)

As many complex carb salad and veggies as you can eat especially dark green leafy’s and brightly colored ones

A lesser amount of complex carb bread/oats/barley/brown rice

Nuts and seeds

Some fruit

Nuts and seeds

Healthy omega oils or unsaturated oils

Your supplements

Avoid sugar if you are trying to break the carb habit. Have it very moderately if you are not an addict and it doesn’t mess with your surgery. Same goes for simple carbs. If you MUST have this stuff don’t eat it in a void. Have a little with a bit of protein or a complex carb or both…that will slow down the digestion rate of it and prevent your insulin spiking. Cinnamon is also excellent at keeping insulin in good nick. Yummy with oats and with baked apples and in your fortified latte.

A balanced diet is balanced in accordance with your surgery requirements. It’s also got to do with a broad variety of simple wholesome foods. Chuck the processed and heavily packeted stuff. Read the labels on ready meals. Go shopping at your local fish mongers and butchery. Find farmers markets close to you. Visit Harrod’s amazing food hall & sample the cheeses there. Every month find a new food or taste to try out: celeriac, venison, giant haricot beans, dragon fruit, guava, cactus fruit (prickly pear but please peel it! ) pheasant, okra, yam, yellow sweet potato….a different sort of cheese, go on! , have a foodie adventure. You’ll be okay then! The ‘dissing the habit’ year will past fast and before you know it you’ll be going ‘bleeeuuuegh!’ at the idea of the junk you used to crave.

Eat 3 times a day at least (INCLUDING brekkie) and if you are having low blood sugar drops increase it to smaller meals every 3-4 hours as your body dictates - if you keep your blood sugar stable you won’t be half as hungry.

The above is written for me too - I have been trying to gain weight by eating more junk. Even though it tasted like rubbish to me, I was hoping for a bit of weight gain. All I got was ratty, stinky old bowels, a head ache , cravings with hunger added to reach for more crappola despite my inherent dislike of it (how wierd is that!’) and to really miff me, alas my recent stint on Mr P’s scale showed a little more loss. So now what? I don’t know. More eating I think, bigger portions. Perhaps a little more introduction of natural enzymes into my food. Thinking on it, watch this space…  ;-) 

Omg my thoughts are getting beyond me!

Do other people ever do this I wonder…start thinking something and then find they venture into thoughts that are way out of their depth? Might just be me.
I just have so many questions.

It’s like a runaway train in my head sometimes.

I want to know…how would a Gastric Bypass patient (or DSer for that matter) detect an early warning sign of hyperinsulinemic hypoglycemia?

Do they exist even? Or must people first start blanking out to detect it?

Could a regain in weight that seems unpreventable put some people more at risk? My logic here is that if insulin starts to put fat into storage rapidly again…that would mean a weight loss that is hard to control? Is this a first sign/symptom in some cases? What other symptoms might there be?
I’m obsessing I know…but I can’t help thinking something can be done. I’m reading of people nearly killing themselves by having severe episodes while driving for example.

Well I just don’t know. I wish I did. I can only hope that someone will research this soon if it has not been done. I should publish all the ’studies’ that I wish were done yesterday…give someone bored out there a lot to get on with lol!

In the article below it mentions chromium as a possible deficiency after the RNY.

http://www.bcm.edu/gastro/DDC/grandrounds/BCM/8-28-03/09-DISC.HTM

However BIG warning about chromium deficiencies…get a blood lab done FIRST. Discuss with your surgeon if you should supplement or not.

A patient on another blog wrote that her doctor told her supplementing chromium was for diabetics only. Not for patients like herself. However she did not mention if at any time her doctor ran a blood lab on her to check for chromium deficiency.

My initial hope for chromium being able to potentially resolve this hypoglycemia in the beginning phases, has been tempered by further research. It could be dangerous to take this supplement without adequate evidence that there is an actual deficiency ie - a blood lab. Again at the risk of repetition, it should not be taken without prior consultation with your surgeon.

Some more thoughts from over cautious Satorijane ….:roll:

If ‘dumping syndrome’ suddenly onsets again several years after a bypass surgery …don’t just think it’s okay.

It may or may not be, but please get it checked out. If it persists for months after surgery…ask about it!
Research the signs of hypoglycemia. It’s a scary thought as is any possible WLS complication, but don’t do the ostrich thing. Look into it. Take action. Be empowered about your choices if it should ever be something you have to face one day. So far it looks like a rare complication , but don’t wait til the day it is so bad it results in damage. Complications only feel rare until they happen to you personally. Take that from the horses mouth.
On my journey through researching the above I came across a new terminology. An eRNY. My ears pricked up…what the heck is that?

Turns out it is  another type of RNY revision. The extended-RNY. It leaves the stomach as a RNY setup to the best of my knowledge, but I need to verify that further. The bit that interests me is that it that adopts the BPD to DS length of bypass. Whether the hook up to the bile duct is the same I don’t know. I know of one eRNY surgery here in the UK but I never knew it was being done regularly enough in the US to be named!

I can see the point of it. Just as I have always seen the point of truly distal malabsorption.
What’s interesting is that some surgeons who vehemently disclaimed the DS (refusing to perform it on grounds of it’s malabsorption) in the past now undertake to do this for some of their ‘carefully selected’ RNY patients.

In an odd way, the fact they are now at least trying to address the longer term problems of some patients is proof of their commitment to their patients. Which does get a little thumbs up from me.

However why oh why not then go on to learn about the DS and begin to offer it as an alternative surgery from the getgo?

What malnutrition issues are these eRNY patients going to need to grapple with later on? Very possibly the same issues that saw the BPD surgery being further developed to the DS in a bid to lessen them.

Are we taking one step back here to take one step forward?

I speak globally here about WLS planet - not on an individual basis, because I imagine there are definite benefits to these RNY patients as well as drawbacks which would have been carefully considered prior to the eRNY. In their shoes I might well have opted for an eRNY…it sounds theoretically as though it has every chance of getting the weight off, which is great.
I hypothesize, but to modify the RNY pouch back to a functioning tum could be dicey. Not only in terms of surgical risks, but because it seems after some time the pylorus may atrophy and not perform it’s function anyway. It may be too late for a full DS revision for some.
The eRNY is being explained in the ‘context of a BPD’. Reading this brings many questions to my mind. In the years to come how many patients will be back in the phase of the BPD after two major surgeries?

Make no error the BPD can be a very efficient weight loss surgery. But make no error it was also not without sound reason that Hess, Marceau etc worked on improving some of it’s side effects by introducing the DS.

Thought provoking stuff.

My question along with a RNYer who asked a very similar question is this:

If the current rny (proximal and distal) are not generally highly malabsoptive then why are they done ? How much malabsorption is there ?

We are not the only ones asking, it is quite a recurring topic on many forums.

As the surgery is put out there as ‘both restrictive and malabsorptive’ …and as this was it’s original premise, is this inadvertently misleading information that needs to be rethought, as time has gone by? Or at the very least explained better to patients?

It’s a difficult one.
The implications of the word ‘Malabsorptive’ by itself appears to have real benefits (and drawbacks, though frankly I’ve always felt the benefits outweigh the drawbacks if properly managed.) Coupled with the association of the word ‘distal’ it develops a certain expectation in people doesn’t it?
Some may regard this as a quibble over words. But words have implications. Not only that but it is vital to get terminology correct. Otherwise it just seems most unscientific.
Recently a surgeon involved in the procedure stated that the RNY has little (proximal) to moderate(distal) malabsorption. Does little to moderate absorption benefit patients enough in the longerterm?

We won’t know until several years from now when the true number of patients undergoing the eRNY from the original RNY are properly accounted for.