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Q. IS THE DUODENALSWITCH (D/S) SURGERY A CURE FOR OBESITY? (top)
It may be said that because I am a DS patient myself I am biased towards the DS, just as other weight loss surgery patients believe they have the most remarkable surgery! However it must be remembered that in my attempt to make my decision for surgery my research was exhaustive. It is also true that any bias I do have is not without a solid factual foundation and not just because of my own good outcome.
I was recently told by an RNYer that in her opinion I do have a tool?
Could have fooled me!
It was suggested I could be misleading people. The insinuation was I make the DS sound so easy.
Well, it is for me. I'm two years out as I write this. I'd hope most WLS got easier. Is there a rule against having an easy time of things?
But I think anyone taking the time to read my website will find I very clearly outline the potential downsides of DS with great honesty. I'd be lying through my nose if I told you that year one can't be a struggle. You have to make an effort of course you do...but your effort will be to EAT, not to diet. Sounds lovely, but can be very hard in reality.
Q. So...is DS a tool? (top)
One surgeon who performs both surgeries openly says: "RNY is a tool, DS is a no brainer." A very few surgeons disagree and say it is a tool - I notice they have RNY backgrounds quite often. They also say we have 'a pouch'. It can be a wee bit confusing. Some people need a tool & indeed are proud of it - good for them why not - if it works that is super. They like the control required to manage their tool.
I had DS precisely not to have a tool. My experience of DS is that at no time do I have to 'work' it. I stay with the few guidelines but it is not actually much of an effort once one masters them and I equate the idea of a tool with ongoing effort. I can understand if you get a manmade pouch it is inanimate - you need to use it properly and know how to. We get a proper small fully functioning tummy. No inanimate pouch. With DS the only tool in my book is our grey matter. Just use the brain to make the correct choices and we are fine. If one is going to be silly and eat carbs despite the clear protein knowledge the DS might not be optimal. If we have a tool at all, the tool is to be compliant - that's it - end of story. But frankly I could not use my stomach as a tool if I wanted to. Even when I never exercised for months my weight fell off. And it is not just me many DSers report feeling perplexed when they are congratulated on their effort!
However if you are a DSer who believes you have a tool - that's fine by me. Feel free to feel what you must.
Studies concerning the longterm success of the DS indicate that the average DS patient will lose 75- 80% of their excess weight and heavy regain is rare. Many DS patients lose 100% of their excess weight and the lighter their starting BMI the more likely this seems. Of all the obesity surgeries the DS has the best long term results in keeping the weight off. As a large part of solving obesity has to do with preventing massive regain of lost weight, the DS can truthfully be called a cure for obesity. Current data is suggesting that regains seldom go beyond 20 pounds and are usually resolveable by focussing on protein & cutting the junk food particularly sugars. Certainly for someone like me the prospect of gaining up to 20lbs, while not something that makes me greatly happy - well it is hardly devastating and a lot less than had I had no DS.
Add to this the fact that the DS patient may eat any foods (within the boundaries of common sense and provided they do not overindulge in carbs and sugar ) without gaining weight and it begins to look like a miracle to those who have struggled for life to not gain weight. Exercise is also not a prerequisite for losing the weight once the DS has been done. It's advised but purely for health reasons, not as an attempt to lose weight. The DS does not have countless rules for weight loss success as some of the other surgeries have. Provided the DS patient is compliant with protein intake, vitamin requirements are met, and the patient gains a basic understanding of nutrition, the DS can be left alone to effect the process of weight loss.
Positive benefits of the DS are often dramatic and quick to appear. Within three months my menstrual cycle was back, my hirsutism begins to stop, my liver feels healthier, my sleep apnea has gone. I am 51 pounds lighter and have dropped 4 dress sizes. Under extremely strict dieting conditions and doing a three times a week exercise session it would have taken me at least six awful food deprived months to lose this weight (in the days when losing could still actually occur for me).
Looking through my medical history I see to my astonishment that my problems have mostly been related to my obesity and that finally I am starting to get my health back. Of particular note is the fact that my endocrine system is regaining its balance and I feel so much the better for it. I believe that I may already be free of the protein breakdown that was hampering the regulation of hormones in my bloodstream. I am aware that it is still early days for me and that most likely the surgery will give me some challenges along the way, but I feel I can cope with those. Over and over I hear of other DSers who report that they too experience quick and very positive results.
The DS is also a cure for both high blood cholesterol and diabetes and some surgeons will consider doing the switch part of the surgery to help people suffering from either of these diseases. Many diabetics are able to stop medication on the day of the surgery.
Q. OTHER SURGERY OPTIONS & RESEARCHING? (top)
In the USA various surgeries are divided into camps and often there is not much tolerance. I have to keep myself in check sometimes because when I was desperately seeking to have a DS surgery I was told numerous times to just opt for RNY which was all that was available here in the UK. I nearly did too, so desperate I was and the pressure was intense just to do it and get done with it , but in the end after much research and agonising, I felt it had to be DS. Surgeons and doctors looked at me as if I was patently insane to want a surgery of which they had never heard. I justified my DS choice again and again. It felt like a real battle sometimes and towards the end I felt I was in a strange way actively having to fight off the RNY 'golden mean' and generally pervasive protocol for the RNY in the UK in those days. (How fast the tide is turning now!) - but then I was just being difficult and arrogant. Not informed and pretty visionary -lol!
Since then I have developed a more pragmatic approach , less based on emotion and my personal lone fight for the DS. I have spoken to many people with various surgeries and some are doing very well with RNY & lapband. I have good friends with other surgeries and they seem contented. There are fantastic outcomes out there. And I am delighted for their happy outcome because all of us share common experiences no matter the surgery. So I do think that while we should look at every type of surgery & that the DS has much to offer, the other surgeries have their uses too & may serve some people better than the DS can.
I do think one factor to consider very strongly is the fact that my RNY & lapband friends do work incredibly hard for their outcomes. They have to be highly motivated and very proactive with their surgeries. They make a huge effort to get to goal weight and stay there. This is why their surgeries are always referred to by them - as a tool. I think we just read that word 'tool' and may not realise the amount of work behind making it work for them. I read the pouch rules for dummies with a small amount of horror I must confess, but also admiration.
I think DS is the lazy gits way by comparison. Yes initially there is effort but we really only have a few rules to stay with and that is the long and short of it. Longerterm I really really did not want the whole planning of my life to be around food issues particularly anything that smacked even a little of dieting &I'm chuffed to say generally it is not.
The thing is to do the research - a vital step that many omit. Again and again perfectly bright and able people just go with the surgeon as god...what if the surgeon is only punting one form of surgery (which does happen!)- of course it will then be the 'best' one for you!!! This is YOUR body and YOUR mind & YOUR life we are speaking about. Don't just research the DS. Go and investigate if what I said about the RNY is true - is it a tool & how will you be using it to benefit yourself? Just because it is a tool doesn't mean it can't help you. But your head must be right for a tool. Personally I admire the RNYers and Lapbanders because they really have to make a much bigger effort than I do. I think they are bloody brilliant! Find out. Take the time to do this. BE INFORMED. Even if people get snide and make comments about your knowledge discard it - and continue to learn. If it is RNY you want be a totally INFORMED RNYer. Lapband? Be an informed Lapbandster. Your surgeon will know a lot but you are the one that must live with whatever surgery you choose. If you understand your surgery you may be able to maximise the success of the surgery. I think we see this over and over again on websites such WLSinfo and indeed on the DS websites too. It seems to be a critical success factor.
BPD would have been my next choice had DS not been available. There is 20 years worth of research and lot's of BPDer s are doing well right now. Although there is evidance coming to light that late regains on RNY are happening & that 60% EWL(excess weight loss) is obtained averagely - RNY is still be an extremely useful surgery for many people who have particular needs & for a few people who have developed fear of food and do not wish to eat in largish volumes. Some high BMI's have VERY successfully lost a lot of weight with it, again a common denominator is that these are the guys that did research and are informed. They do a lot of 'headwork.' They are bright and they think a lot for themselves working out plans. Regains of RNY do worry me - in the USA lately the regains being reported are not small & are rather alarming -and I am scared to think here in the UK it is like a taboo subject.
It is not openly discussed and I do understand why not, but I worry the pre- RNY patient is not getting the full picture and that things are not being said that should be said? Look at the revision groups and you will see there is evidence that this can be a struggle. Longerterm with this surgery you must continue efforts - join support groups & stay in control. Many RNYers will be dieting for life.
However I also feel people should ask the surgeon they intend having RNY with - what his longerterm results are like in terms of regains as series of patients might differ? Also to keep in mind not all RNY's have regains some have very good longerterm outcomes with no regains. I know a lady 6 years out with no regain & her hubby 5 years out - no regain. I could be forced to name drop if you pushed me! Please do your reseach very carefully and try to find long term patients out there who will help you get the full picture.
Q. BPD what is it and what is the difference between it & BPD/DS? (top)
- Stomachs differ - BPD is more like RNY, only much larger...pylorus is bypassed
- Intestine anastomised to the stomach
- A larger eating capacity than DS not the same restriction in year one
- Risks for ulcer greater
- No duodenum in bloodstream could mean less nutrient uptake
- Shorter CC could mean less absorption -more diahorrea - less nutrient uptake
I don't understand why certain surgeons here in the UK persist with it... if they can do this more complex surgery then DS is a possibility technically. It is still a good option for loss of weight however DS is probably a better option for your health overall.
Q. When is the RNY the best option? (top)
RNY is NOT my field of experience. I have mates doing well with it at 2 years out. Happy to pass you on to them - one I would trust almost operating on me knows his stuff - Ken Clare - top man. Ask, I know he will be happy to talk to you.
- If you have metabolic bone disease RNY might be a better option for you.
- If you need control & a strong set of boundaries to work with, RNY might be for you.
- If you have trouble with memory don't have the DS as you need to be on top of your vitamins every day.
- Vegetarians can have DS but I don't know how their labs look long term & RNY might be better for them.
- Bear in mind Distal RNYers may need as much protein as DSers.
- You like to drink alcohol & are not willing to give it up for a year (though to be purist I don't think any WLS patient should be drinking. It's loaded with sugar for a start.)
- If you are unable to research nutrition or feel you really don't want to - then don't have the DS because it turns the food pyramid upside down literally!
If you adore carbohydrates with a deep passion - DS might be risky unless you really are willing to work with it , but consider it very carefully, as I used to love pasta, chips, bread, pastries but even though I can eat these things well, they just don't taste so good at all. So DS can change your tastebuds and get you going for the protein choices. Loads of Dsers will testify to being big on the carbs presurgery and slow on them post surgery. But for the rare one, it can be a problem. Therefore assess things carefully and especially understand BEFORE surgery what your diet will be like. I have noticed that almost without exception the DSer in resentment about the DS diet is the one who never researched it beforehand ...so after surgery it is a HUGE shock for them.
Q. So in a nutshell why did you personally choose the DS? (top)
- vagally intact stomach with intact pylorus valve
- excellent eating abilities - I like to eat when I want - it's great!!!
- unlike RNY you can drink with food & not worry about flushing the contents of a pouch
- preserves natural biology
- built in malabsorption factor means fats are no problem
- built in malabsorption factor means weightloss stays off
- highest percentage of weightloss out of all surgeries
- lowest percentage of late regains
- all other surgeries are revised TO DS, ds is not ever revised to the others
- lowest incidence of vomiting of all surgeries
- no dumping
- no ulcers
- intrinsic factor is still produced so no B12 injections except in highly rare instances.
- distal rny take almost as many pills as us
- distal rny may require as much protein as we do
- RNY side effects can be as bad as DS side effects on all levels
- DS is reversable except for the stomach which stretches out to almost normal size in any event
- I like the idea of less control. DS does the job.
- DS has a lot more 'give' than other surgeries & can be manipulated if not optimal
- Usually (but not always)the bowels will work well & without diahorrea
- Excellent ethic regarding regains compared with other surgeries where you are blamed for sabotage etc should your worst fears come true. With DS regains beyong 20 pounds will prompt medical investigation and tweaking will be done to aid your progress. I like that.
- The DS is pretty standardized compared with RNY
- The stomach can be explored with endoscope unlike RNY where it remains inaccessible.
- DS is suitable for those with long term requirement for nsaids.
Q. What is metabolic about the DS & Why call it a possible cure? (top)
I posted this very question onto a WLS forum as I had been wondering about this a lot:
Be warned this is going to be a long one. I have things on my chest I must get off - it's my way nowadays. I used to withhold and withdraw- but no more
So if you worry you will gain lot's of weight on the DS - if you, like me, wonder where the heck your 'tool' is - go get that cuppa tea if you intend to wade through this...cause I have something I want to share with you DSers.
I have read the Scopinaro report a hundred times at least. It's the DS bible in many ways & it is still very pertinant to the DS as we all have the BPD nearly unchanged in our intestinal set up. (with exception of duodenum being in the bloodstream & longer CC). Yes, it is the writing & observation of a surgeon who does this surgery...of course - how else could he record his observations...an RNY surgeon is sure as anything not going to write up a report on DS!!! It is peer reviewed as far as I know (could be wrong) it is on a good number of people it is astute & intelligent.
But enough - let me get to it. The other day as I browsed through the overfeeding aspect of the report yet again it hit me lightbulb syle - there is really a whole uncontrollable thing at play with the DS. I am fascinated & I have sat for hours trying to get my thick unacademic head to grasp the medical terminology.
For quite a while now I have battled with the terminology being applied to the DS in the UK. It worries me because I am anal and purist and I want to minimize confusion and guilt for the newer DSers. I grew up in the days where we DSers had 'a small vagally intact tummy'- not a 'pouch'. A pouch is a manmade inanimate object used for storage and the stomach is a living moving dynamic organ. For us DS was 'a cure' not 'a tool'. Yup, I know these seem like small things and I'm happy to say nothing is as perfect as normal physiology & that 'cure' could be percieved as too strong - but I feel in my marrow it is incorrect to apply RNY terminology to DS. Why? The DS has it's own and this should be encouraged not squashed. Things like 'tool' & 'distal' are pretty far apart in the two surgery types.
I sometimes thought that 'the cure' bit might be pushing the boundaries - sounded a bit pompous & arrogant - it could also be construed in the 'it's a miracle' genre (which for me it actually is in many personal ways - sorry folks, but I guess all wls patients who have lost the dripping feel the same way about their surgeries- no matter the type).
Still, the tool bit had me flummoxed. You see I rather liked the idea that I might have some role to play in my DS - that I could 'work' it somehow- and I am very guilty of nodding my head vigorously when an RNY buddy looks at me depreciatingly and says with all the wisdom of an old sage: 'of course all surgeries are tools you know, and you must work them else you fail.' (Oh mortifying shame is mine!-more than once I have felt nasty shame at being an outright liar and pillock!- I mean, what tool? Where?)
So I have been looking back on my journey with DS and I have to be honest and say - okay Jane, so what did you do aside from eat your head off (even when you weren't hungry)and haunt the protein departments in the supermarket? Let's have it? How did you 'work' it. Spit it out & lets have the truth -
Errr,um, let me think!
I do exercise. On and off. I always walk a lot. And I did water areobics for ages once a week.I started doing this at about 5 months out until which I only ever walked. My first 3 months I had beautiful weightloss & not a jot of additional or heavy exercise. I have dabbled in other forms of exercise. Did it make a difference to my weightloss - nope. It helped my overall health but plateaus were never swayed by my frantic efforts to up my exercise.And the weightloss continued unabated albeit slowing down as it is supposed to.
Okay but did you diet? Nope. Nope & nope! I have never eaten so much it seems. There were times I got utterly sick of eating. There were times I forced it. I nearly died of guilt sometimes thinking I would surely be punished for my transgressions (Still have days when I am sure I am going to suffer for my sins!) Okay - let me just say I did eat 'the right things' but had I in the past indulged in a steak smothered with rich creamy cheese sauce, in fried bacon and eggs, in chunks of cheese, handfuls of nuts, real mayonaise & butter too - I would have GAINED weight so fast it does not bear thinking about. While I lay my little foodie soul bare - Let me also state for the record if I have the space I eat some form of DS junk food almost everyday. A small chocolate bar, the odd biccy, sugar in my tea , crisps, dessert. Not to excess or all at once, always after protein is in- but one of those things will most likely pass my lips during the course of the day. I had a peak experience when I discovered chocolate has protein
But I digress, lets go to Scopinaro -
The man, bless him, must have known some of us might overfeed ourselves from time to time and maybe he saw our self flagellation & guilt too when we did so he did an experiment- he took a bunch of BPDers and on top of what they were eating he gave them 2000 cals extra in (carbs and fats - I think that's important, because maybe if he gave them sugars we might have seen less positive results?)- but despite eating all this extra for fifteen days the weight gains were negligible and in some of the cases they lost weight-lol!. You can find this study on the Scopinaro report: 'Table 2: Overfeedingstudy in 10 subjects 3-9 years after BPD. Individual data of body weight (BW, kg) at the beginning of the study, after a 15 day period on usual food intake (mean: ~ 3800 kcal/day) and after a 15 day period of overfeeding (usual food intake plus 2000 fat/starch kcal/day).'
People we are talking about 5800 kcals A DAY! I don't think it wise to push the DS or any surgery for that matter, but it is still rather incredible.
The authors of the report then go on to seek an explaination for it. They hypothosis that the bowel undergoes adaptation, increasing in size and undergoing functional activity of the entire gastrointenstinal tract - and that this requires energy consumption...so that the energy we are consuming is actually used equally to effect this in our bodies.
In the same section but in another study: Quote Scopinaro-'Therefore, in our 53 BPD subjects, on the average the weight loss can be entirely explained by the changes of body composition that follow the operation.'
In the same report he says that when we eat more or our energy intake is increased - it results in our malabsorption process increasing as well so that the total amount of enery we absorb remains constant. He says it's explained by the idea that the BPD digestive absorptive apparatus in our bodies has a maximum transport capacity or limit for fat & starch and if we exceed this threshold we simply cannot absorb anything further.
The way I see it this is way way beyond the idea of a tool? For me a tool implies control and use of something...in our case our bodies are working with an altered metabolism that is beyond our control in many ways. (Seems the only way we might prevent it working is by eating simple sugars and not doing this can hardly be construed as a tool). The long and short of it is the body has been altered at a fundamental metabolic level by the surgery and in effect it has cured the metabolism. So there is no wrong in thinking it a cure or at the least the closest to one we have at this stage.
We just eat the correct foods as abundantly as we can for our health & benefit and go with the flow...
I am still pinching myself saying did you get it right, Jane? I have re-read that damn section again and again out aloud and each time it has me whooping and jumping up and down because it is actually incredible stuff to read. Cutting edge stuff to be able to intervene in metabolism really in an intelligent way that gets it more efficient - is so big & so darned clever, I am actually suprised this surgery is not on the front page of every newspaper in the country being heralded as a huge medical breakthrough. I can only think the medical jargon has obscured the significance of this for the layman.
If any of you more academic types would be so kind as to look it over and tell me if I have misread it somehow, I would be pleased to know, so my family can be spared further episodes of my odd behaviour that is now bordering on touretts syndrome-lol
As a last word - on the carbs remember the great bloat factor -lol! Maybe that passes at the 3 year mark which is when Scopinaro began this study with his subjects but right now I still have it. Also that 5800kcal said nothing about simple sugars, be warned - my simplistic one week experiment on the simple sugar scenario yielded a nice fat weight gain -
So there we have it. If today you have overdone it a bit - and think you'll be getting a lashing , relax...chill out and go and eat a nice piece of cheese! Ahhh, what the heck go have a cracker with it too -
Read the SCOPINARO REPORT (under weightloss maintenance)
Q. I am only 22 years old and I want the DS what do you think? (top)
You should have serious discussion about this with your surgeon as I only have opinion to spout on this one and I cannot assess your unique person. However, if you are young look at options such as the lapband, as the DS is a strong measure of a surgery, and in the future answers might be found that cure the disease. Personally if I was under the age of 25, even into my 30's (or a lowish BMI) I would be looking at the lapband as a serious option. Now, I am the first to say the lapband is often done on extremely high BMI's and it grieves me as I have stated above, but there it is, even on high BMI it has it's successes - certainly in the case of a youngster I think it could be a highly appropriate tool. My young daughter is 17 years old and normal BMI but if she needed a surgery I would ask her to consider the lapband. (Bear in mind that I would consider her obesity a 'non-entrenched' type of obesity in that she would have not had it throughout her childhood.) I would ensure she was seen by a top surgeon who has done the procedure countless times and who knows his stuff. He should be the type of man who will help a youngster maximise the lapband after surgery and who will in the instance of the younger patient provide ongoing aftercare. My personal reasons are as I mentioned - a pill might be developed - and secondly if the lapband only works to a degree it will still impact greatly on a childs confidence levels, health and life. Thirdly it may be seen as a good stepping stone towards having the DS in later life if the BMI is still 40 plus.
Yes, there are young adults in the USA with the DS. It has worked very well for some of them. But we just do not have the longerterm research on the DS for young people who may still be in a metabolic process.
If you had your heart set on the DS I would say this at risk of sounding highly patronising.... be very sure you are mature enough to be extremely responsible with your nutrition and daily vitamin regime. Only consider it if your BMI is higher than 45 and your obesity is very entrenched - in other words you have had it long term. In this case I would not hesitate to recommend the DS. I feel that their are individual cases out there that need stronger medicine than the lapband and that circumstances need to be carefully evaluated. Entrenched long term child obesity is a very different kettle of fish from a young girl/boy who has only had obesity for a couple of years and treatment methods should take this into account.
Of course the beauty of DS is that a child has a life as near to normal on the eating front as it gets and this does have HUGE social advantages. Weightloss is rapid in the early months and this boosts confidence. Add to this that there is not the ongoing effort factor of the other surgeries. With DS if one works to get into good habits initially, there is less long term effort, leaving the child free of food related issues and eating to live not the other way around!
I used to consider lapband as the answer for a young person (see above)- I am mulling on removing that - I think I am now veering more to the idea that if one of my own had my problem I would look at a sleeve gastrectomy first...with option to do DS later - however I have not yet seen enough longerterm data on this to be pragmatic about it.
Q. Are there any surgeons doing the DS in the UK? (top)
Mr Kerrigan and Mr Dexter are both beginning do the DS here in the UK. In Europe we have Prof Dr Weiner in Germany and Dr Aniceto Baltasar in Spain. There is also a Belgian Surgeon, Dr Himpens. There is also a surgeon in France doing the DS but I have as yet heard of no details concerning surgeries he has done. Contact numbers for Prof Weiner and Dr Baltasar are available at www.duodenalswitch.com.
Q. Can I carry a baby to full term with the DS? (top)
Yes, there are healthy babies born to DS mums. The only thing is the pregnancy will need close monitoring and extra supplements might be required. You need to discuss your levels of ADEK with the people managing your surgery so you are sure they at no time get toxic. And it is best to wait for 2 years to go by before falling pregnant.
Q. What are the risks & downsides? (top)
With any surgery there is a risk of death. Specific risks for death vary from report to report and some say it is around 1 in 200, others say 1 in a thousand, and there seems to be no consensus on this. There is a risk this surgery could leave you struggling with lifelong diahorrea and nutrition issues. Later risks could include bowel obstructions as well as cancer. These percentages are reasonably low, but need considering. We do not yet know what happens over the very long term when you run undiluted bile down the intestine, for example.
Furthermore a complication is a big deal. It affects everything. Consider things so carefully before commiting - do loads of research into the complications. Please know that we are not exempt from the unexpected. I went through all the worst DS case historys I could find and yes, I did have some sleepless nights. In no way do I play this down but when these risks looked scary to me...I would ask myself what the risks of staying obese were?
This quickly put all of the above risks into perspective, as I looked at the high risks associated with obesity: strokes, heart attack and cancer risks are all considerably higher than DS risks. At least they were for me. But do your own research on this please and investigate methodically before deciding to have surgery. Risks do exist but here in writing they look so insignificant. In real life it must be another matter. Getting that leak could have ripple effects on ones life affecting family & economics. Leaks may cause death but more often they just take an age to heal...months sometimes.
Living with constant diahorrea must be frustrating not to mention very wearing on the bowel sometimes. Try to imagine the worst in your life - none of us want to think on this but I feel it is worth serious consideration. Try to have a contingency plan in place even if it is just a little more money or suchlike. Also remember that those who suffer complications often say -once danger has passed-they would still do it all again despite the difficulties.
One last word on this, the surgeons who do bariatric surgery are a very skilled set of surgeons. They will fight for your life if anything goes wrong. They should also inform you of the risks in no uncertain terms. The incidence of complications and morbidities is actually very low considering what risky candidates the obese are for surgery.
Here is a link to some DS risk stats.
Q. Is the DS operation a safe procedure? (top)
Below is an excerpt from a letter written to an insurance provider by Dr Hess. At this stage he had been performing the DS for ten years.
Short answer, yes! The patients we have operated are 155 re-operations from failed gastroplasties or failed gastric bypasses. Of the total 1300 cases, 750 patients had a BMI between 40 and 50, 550 patients were in the super-morbid obese group (BMI ranging from 50 to 90).
- Gastric leaks: less than 1 %
- Death rate: 6/1300 = 0.47 %
- Reversals: 8/1300 = 0.61 % - When needed, reversals are relatively simple, you need only to reverse the small bowel portion
- and the patient does well.
- Revisions: There were only 34 revisions in 1145 primary cases for a 2.9 %. - This also is relatively easy, needing only to revise the distal Roux-en-Y. Large numbers of failures and complete re-operation is not needed as in many of the pure restrictive procedures.
Q. Are there Late Regains? (top)
Yes we do see them. It is rare but I still think we need to address it.
Some Dsers say getting a little rebound weight from ones all time low is common....and its up to us to decide if we want to disregard the carb thing to some degree and just live within a very normal type of perameter really - or if we want to live with more constraint.
By my stage out (2 years now!) it is unbelievably easy to go a touch overboard on unnessasry foods. You see - I have space left after my protein needs are met AND my veggie needs are met ....so it is tempting to stick a pud or choccie into that space! I could do this 3 times a day if I chose too & chose is the operative word! The regains do not seem to go beyond the 20 pound mark as far as I am aware and as soon as those Dsers start re accepting that we are not bypassed for carbs or sugars they lose it quite easily.
Do not think that just because we have some leeway it means we can go mad with carbs and sugars. We cannot. These will stall weightloss & encourage gains at my stage of the game. My feeling is that part of the problem is that we need to understand the DS adapts to us and that behaviours such as grazing that worked very well in the first 4 months might not be any help to us in later months. The fact that in year one you could eat a chocolate every night and still lose well does not mean that in year two it will be the same!
Carbs snuck in - they are lazy mans food...very easy to eat in year two in my experience. They reduce to little in the mouth, take little chewing and most don't have the solidity of protein. I don't like them and many of us DSers don't after surgery but some go on with the affair - we are all so different. If it is carbs causing probs switch to complex ones and begin to eat in a set order starting to eat with protein first - go back to basics. I cannot stress the importance of the new DSer learning to eat in order: PROTEIN FIRST!!! Those of us that start this habit from the getgo struggle a lot less that those who eat in a higgedly piggedly way.
Tendancy to eat too much is rare with DS, technically it would be hard to overeat as we have a huge leeway. According to a poll I looked at most DSers are eating in the 3000 calorie range daily and I average late 2000cals myself with days I eat more. The big danger with regain is really not how much we are eating as much as WHAT foodstuffs we are eating. In my case sugar is always the control.
However, there are cases where it is possible the stomach has stretched out too much. Usually this is because the surgeon left it too big to start with. My plan of action would be to water load - drink a very large drink with my meal which I would size carefully . Cut out carbs and sugars . And eat protein predominantly plus a few complex carbs for health. I think it could go a long way to stall overeating & re-invite satiation. If this failed I'd consider a revision of the stomach - success with this method has been very good as far as I can see.
Get your head around sweets and carbs in year one - work out that you can have these from time to time but that you really don't need them everyday! If you are sabotaging contact me - contact a therapist do something!!! Don't go into denial. Headwork is a big part of this process & it can be done ask me I was the worlds worst candidate for DS with my love of sweet things. Most days I do have a carb or sweet something but *never* to excess. I have a piece of choc then forget where I hid the rest of the bar! Train yourself to enjoy a couple of pieces of something nice. Also be prepared to substitute - I often have a nice hot chocolate drink called 'options' - it is sugarfree - at night, and it puts away my sweet tooth for me!
There is no place where I have seen it written that you can eat *anything* in *any amount* you please on the DS. We are always advised to go very easy on carbs and sugars. In year one I did not fully grasp why - in year two I am getting wiser!
You'll never be deprived, but there is no surgery out there that will work for you if you are intent on excessive carb & sweet intake.
Q. Is the biliopancreatic diversion with the duodenal switch effective? (top)
Here is a little excerpt from renowned surgeon Dr Hess:
Short answer, Yes! We have a study of 120 possible patients who are a minimum of ten years since surgery. Of that group we were able to contact 111 for a follow-up percent of 92. The average excess weight loss at the ten year point was 75% and the percent in the satisfactory category at that level (ten years) was 94%, graphs and tables are included. If you look at our standards you will see they are very high, you may compare any other personā\u20ac\u2122s results to ours, using our parameters, and I think you will find ours very good. We have performed 1300 cases since the first one in 1988, which was a re-operation on a failed gastroplasty.
By the year of 2003, I know of at least 10,000 cases performed in the North America. Many insurance companies are covering this operation. This operation has the best long-term weight loss record of all bariatric surgeries, and the best patient satisfaction.'
Q. Am I a candidate for surgery? (top)
If your BMI is 40 or higher you should qualify. however at this stage the UK surgeons are rightfully cautious prefering to do surgery on BMI 60 plus. If you are BMI 35 with serious co-morbs such as apnea, diabetes, joints degrading, chronic back ache etc...you may qualify, but personally I would think very carefully about this.
If you have a history of mental illness, addiction to drugs or alcohol, or have osteoporosis, you may not be a suitable candidate, but discuss this with your surgeon.
Q. After surgery did you have pain and if so when did it go away? (top)
Naturally after surgery there is pain. It varies from person to person. Personally I do not live well with pain and so I took care to ensure that at the hospital I would get top notch pain management, which I did get. This makes the pain manageable in the first week although I would be lying if I said I was totally painfree. Day one after surgery I was very sore. It's to be expected after any major surgical procedure.
Once I got home and was off the wonderful self administering system I had in hospital, I took pretty hefty(but safe) doses of paracetamol in suppository form which gave me enough relief. I did this for around 2 mnths. Then for a month I took the odd oral dose. Most days I was fine, but occassionally for a reason I could'nt understand I would have a bad day. Then I would be sure to take the paracetamol and to rest and the next day I was fine again. Very seldom at 9 mnths out I get the rare occassional tweak...usually after a day of running about.
I lived with much more pain when I was obese than I do now. Nowadays I am a virtually painfree phenomenon!
Q. Will I be normal after surgery? (top)
I often say I am *as near to normal* as it gets! Usually this in relation to eating... But overall - no, you won't be. Your biology has been altered. You will exchange a set of devastating challenges for a set of a lot easier ones, but it would be very unrealistic to think you will have none after your DS. There are side effects that you must learn to live with daily. Happily once mastered they are not too bothersome. Mental balancing acts are important with getting to grips with the surgery. It takes time to adjust to this and at 18mnths out I still battle & grapple with this mentally sometimes, especially if I am having a not good couple of days, as does happen from time to time.
Q. What do you wish you had known before surgery? (top)
I wish I had understood that I was going to be in for a very long process which I am still in now! I say understood because of course before my DS I knew everything!
I had done all the research possible and intellectually I had stores of knowledge and much expectation! Very quickly after surgery I was neatly stripped of all my idea's about the DS as I struggled to cope with it in reality. I learned that I would have to try to get through the hour, never mind the day! My body which I once more or less knew in my cut off kind of way...screamed for constant attention. When one of the nurses asked me how my night had been I told her it was like having a new baby...I was up all night and did'nt know what to do! My husband drily added: 'yes, and this is a baby we unfortunately can't hand to anyone else!
At first I got angry about it and highly irritated. But then I realised I needed to intergrate with my body more and be affectionate to it. It was struggling and I was resisting and so on! When I relaxed and just listened to it...things got a lot easier for me. Instead of forcing mince on it I would give it the rice it was pleading for and later eat some mince and now this body and I are good friends!
This is just one example of many adjustments I had to make...at about 3 months out I was still feeling like hell warmed up and I bitterly wondered if I would ever be a glowing cover girl for the DS...hell no! I felt a bit conned! My tummy felt extremely strange, I had repositioned guts feelings, I was sick to death of protein, protein, more boring protein, the vitamins stuck in my throat, I had night pains that scared me horribly, I had nightmares at night, my fears rose up in my head convincing me that I would get a bowel obstruction and need more surgery, I had an eruption of sandpapery pimples that looked far from charming all over my face...I wondered what I had done to myself more than once! I was a wreck!
This is not an easy thing to undergo by any stretch of the imagination. You may have months of wonky feelings, extreme tiredness, pain, adjustment to a tummy that no longer even likes what you love! You might be lactose intolerant, bloated, windy, swollen, diahorreac, nauseous, feel much worse off than before, in fact just feel damn irritable!
Looking back on this, one of the worst things was I felt I could not complain to anyone in my family...after all I felt I had put them through enough. I wanted them to have the impression I was doing excellently! Longer term DSers I also felt I could not turn to...after all they were full of the joys of the DS and success stories and I was just a miserable failure moaning on! It left me feeling excrutiatingly alone and isolated.
Thankfully these times came and went and I had days rather than months of these feelings. They never turned into major depressions. But I fully understand how very easily one can sink into a lengthy depression and need medication for it. If you feel this way...seek help! It is not abnormal in the least and the DS can leave one feeling utterly traumatised in body, mind and soul sometimes.
To those embarking on the DS train ride...I would like to say...have few expectations! Be realistic...your entire guts has been re-routed! The surgery is a near equivalent to an organ transplant-except the organ is your own extra piece of intestine - it's a MAJOR surgery. Do not compare your ride with others...some are up and dancing from day one while others of us just feel sick to the core! Cultivate a wide open mind! Your body has it's own intelligence and sad to say...you are not boss! It's a bit like any new relationship...at first the rosy glow and then the naked reality! But if you try hard to remain positive & patient (my personal mantra to myself in the early days!), if you rest when you need to and be gentle with yourself, there will most likely come a day when you are truly truly SO pleased you did have the DS after all.
Q. Please tell the truth about gas and odours... is it really really bad? (top)
No one's gas or stools smell like roses. But, yes, the odour of our stools smells pretty pungent sometimes and it can linger. For me, it is worst after eating carbs and some DS'ers say after eating fat. Usually a few sprays of a powerful airfreshner takes care of it. There is also an internal deodarant called devrom that seems to work quite well.
I go to the bathroom once a day in the morning on waking. This is an urgent call and I can wait no longer than around 5 minutes to use the toilet. I spend up to half an hour on the toilet and have around 3 consecutive sets of stools, progressively getting softer. As a result I am thinking of becoming a toilet seat designer :o). Then it's over and the day is mine, unless I eat a lot of fat or fibre in which case I may have another stool just before I go to bed.
I do have occasional bloating and gas. It can be uncomfortable. When it persists for longer than 3 days I take flagyl 250mg for 10 days and 2 acidophilus capsules everyday. I also increase my yogurt intake. So far I have needed to do this once and it worked beautifully! Flaygl must be prescribed. Good acidophilus capsules can be bought out of the fridge in your health store - look for one that has at least 3 strains of bacteria. I want to stress that at no time is the gas uncontrollable. At no time has the skin of a DS'er ever smelt bad. These are silly myths with no truth to them.
Some Dsers find this aspect hard to deal with. I believe some of it is again in our head. One can choose to have this make ones life a wanton misery or just accept this is how it is and all poo is stinky.
Q. Do DS'ers have diahorrea? (top)
Again, it differs from person to person. Some Dsers even report being constipated. I do not have diahorrea other, than a one day event every month, which I am now able to prevent entirely by realising that it was because my intestinal flora were getting depleted. A dose of acidophilus has everything in good order the next day or prevents it happening at all. Occasionally acidophilus has no effect & I then take brief doses of antibiotics which see me right quickly.
In the first months I had diahorrea. At around 6 weeks out it stopped. The greater majority of Dsers do not have ongoing chronic diahorrea, but it can and does happen sometimes. Chronic diahorrea is defined as having extremely loose stools 6 or more times a day. If it does occur, there are certain drugs that may help stop it. Consult your doctor or surgeon about these.
Up to 4 stools a day is normal for a DSer.
Update at 2 years out:
I seldom get diahorrea at all - the once a month has evolved to once every 4th month. I still go to the toilet once a day in the mornings and do 3 poohs in succession and with ease. I have forgotton what it was like before my DS now!
Q. What do I need to take to hospital with me? (top)
Most hospitals have their own gowns so you do not need pyjama's. Maybe take one pair for the last couple of days. In the Krankenhuis I used the hospital gowns every day.
Here is a little list of things I packed:
- A gown/robe.
- One nightie or one set of pyjama's
- soft elasticated pants and loose T-shirt for going home in. Think roomy! Your belly might be a tad swollen and anything tight will be very uncomfy.
- toothbrush, hairbrush & personal toiletries.
- tampons/sanitary pads...ladies, it is not uncommon to menstruate shortly after surgery. I had not menstruated for 3 years prior to my DS...I got the fright of my life thinking I was bleeding internally :-)
- aromatherapy quality peppermint oil (wonderful to sniff in the first days) also an excellent bathroom deodoriser.
- Baby bottom wipes.
- Barrier type cream for sore anus (just in case!) If you have hemarroids, take a good aneasthetic cream.
- Natural Juice Ice Lollies, ask the nurses to freeze them for you.
- Tapes or portable Cd player
- A diary to jot down your experiences and a pen!
- Your camera
- A bottom wiper of sorts, I think these can be bought online somewhere.
Do not bother to take:
- too many pyjama's/nightgowns - bluntly the reason for this is that you will most likely have explosive, spattering type of diahorrea (pyrotechnics sans fireworks!)...it may get onto your clothing causing hygiene problems for you. The hospital gowns open down the back, so no mess. And if it gets messed you just ask for another one and there you are! I lived in these and only wore my pyjama's if I was walking outside in the courtyard.
- books or a computer - you will be fuzzy from the painkillers and concentrating is very difficult.
THE EMERGENCY BATHROOM KIT:
I still use mine often and take it everywhere!
Buy a zip up toiletry bag.
- peppermint oil
- gas relieving medicine, recommend 'deflatine'
- paracetamol (suppositories 1000mg's for the 1st few months) later just the good old capsules will do!
- baby wipes
- spare knickers just in case!
- Slimline panty pad
- small bathroom spray -find the littlest 'febreeze' spray fit's well into a toiletry bag and works well.
- anaesthetic cream for hemorrhoids.
- one days worth of vitamins
- one protein bar
Viola! Covered for any emergencies! I'd like to add I haven't had an emergency yet, but it's nice to just feel secure and prepared.
Q. The Bottom Wiper Review. To Buy or Not to Buy? (top)
I asked a friend to write a review on the bottom wiper which she had just bought off the internet -she wishes to remain anonymous (well, do you blame her!) This is what she wrote:
Here are the findings on the 'bottom wiper' from the Irish jury:
My first impressions are not good.
I can't see how it is going to work even when I finally decide which way up it is held. Though the web site states that it is for front use, the pack instructions allow both front and back options and for this I am grateful. It is bad enough coming to terms with having difficulties in this area without the bum steer of having to do it from the front. This doesn't bear thinking about, especially after results of initial efforts.
The device consists of a metal rod bent into a handle at one end, with a rounded plastic attachment on the business end, which cannot be cleaned in boiling water. On the back of this are serrated edges or teeth. The idea is that the paper is wrapped around and held there by the teeth. There are no illustrations or guidance on the packaging as to how much paper to use so I start off with a nice thick wadge and reach round for first road test.
I wipe vigourously. On examination I find that wadge is missing and wonder how to sterilise wiper for test number two later. I follow insructions and clean it in warm soapy water and embark on second test after a suitable interval. I use one piece of paper and muse on how I'll spend the money saved on loo roll. Not for long - I need rest of loo roll to keep badly soiled single piece, which is firmly glued to wiper, away from hands but without complete success. Nothing daunted, I again allow a suitable interval to elapse before embarking on test number three - moist toilet tissue. Results are encouraging; tissue remained in place and is easy to remove.
I use half a dozen or so before I begin to feel satisfiactorily refreshed. Decide it will take time to get the feel of it but feel quietly confident that I can master it. I don't need it yet but know I'm going to, so it's a good idea to practice. Skid marks on knickers later indicate that early confidence badly misplaced. Test number four: have run out of ideas. It occurs to me that this trial is all very well in privacy of own bathroom but could prove disastrous in public.
Also note that it is big and awkward shape for handbag - and that's when it's clean. Have mental picture of going through metal detector on way home from Frankfurt and having to explain it. Decide that better idea is to hope I never need it. I have put my mind to design improvements and I think, with a little ingenuity, a washing up sponge with replacement heads, some velcro and a box of man size tissues, with the optional use of clothes- peg would be easier to explain to customs chap searching handbag.
Update on bum-wiper some months after surgery:
This is an update on the bum wiper review that I did in the smug old days when I had no need of it.
I smuggled it through customs without any embarrassing incidents on my way to Frankfurt. I also took my bright idea of a washing up sponge on a stick. The latter proved to be totally useless but the bum wiper was a little darling and I could not have managed without it for the first week post op. I now appreciate that a lot of thought probably went into its design but I still think it doesn't need to be metal.
Necessity made me treat it with the respect it deserved and it was in full-time use the first few days after my operation as I was unable to twist round to do the necessary. The cheap, hard loo paper supplied by the hospital was the perfect partner for it, as it didn't disintegrate so easily. It also works perfectly with moist toilet tissues, especially as immediately post-op BMs are frequent, urgent, runny and acidic.
I did not have to explain it to customs on my return journey because it was stolen from my bag en route! By this time it had become my friend and I intended keeping it for posterity so I was very sorry to lose it. Whoever the thief was, I wish him well of it and I hope he soon found out what it was used for!!
Q. What foods should I stock up on for after my surgery? (thanks Nicki!) (top)
After surgery your first concern is to get enough fluid into your body as top priority. Dehydration is not uncommon and your body needs fluids for all it's functions. Therefore first and foremost ensure you have bottled water that you can carry with you from room to room. Sipping constantly between meals is a good thing to do. I also advise that you have an isotonic drink to hand to replace minerals. Sports shops and specialist health shops should stock this.
Bear in mind that you may develop both an acute sense of smell and taste. Things you love the idea of now can have zip appeal for you after surgery. Sweet things can border on tasting offensive! I stocked up on things that still linger un-usefully in my cupboards as I write...among them pot's of babyfood.
I'm inclined to say buy a pack or two of rice cereal, oatmeal for straining and apple puree. I hated sugar but a mild honey was fine. For the rest, do a daily little walk around the supermarket. It will be very good for you to walk a little as well as help you decide on the minute what you actually feel like eating. Remember you are going back to your body now in many ways, and it is very good to work on listening to it. It is going to tell you exactly what you need.
Be aware that dairy might cause you gas and bloating plus diahorrea. If it does you are lactose intolerant. I was for a month then my gut adjusted and I am fine with diary now. Take lactase tablets before eating diary products.
Foods suitable for the first month (if your surgeon allows you soft solids-please check!) are:
mash potato's (add a bit of cheese or cream cheese for protein or gravy),yogurt, egg custard, egg drop soup, veggie soups and meat broths, pureed fruit, mashed banana, well cooked rice, oatmeal initially strained, soft white fish, rice cereal, cream of wheat, soft polenta, jello, cottage cheese. Ice lollies made with natural fruit juice and sorbet ice-cream are wonderful and help reduce swelling of the stomach. If you desperately need a cracker or similar solid, be sure to chew it very well before swallowing and sip a little water after having it.
In the months after surgery, it is very very important to eat even when you feel you really don't want to. Your organs need to work to heal.
OTHER ITEMS FOR AT HOME:
- Loads of pillows for your bed...I found a body pillow useful
- paracetamol 1000mg suppositories
- a water filter jug for good tasting water
- waterproof dressings
- if you are prone to keloid scars...scar reducing plasters
- mineral replacement isotonic drinks
- glucose pills for if you feel very weak and faint as I did!
- deflatine worked very well for bloating episodes
- acidophilus - during surgery strong antibiotics are used which does not help matters, acidophilus will help prevent thrush.
THRUSH: an odd fungul growth like seaweed on your tongue...may be yellow, orange or even black in colour. Not uncommon after surgery. See your GP for an oral drug that works well. Take acidophilus as directed on the jar. Eat yogurt if you can.
Q. When should I aim to leave hospital by? (top)
If you are going to Germany aim to leave hospital on the 6th day post op. Hospital is a boring place to be and you may yearn for home comforts.
Q. How does it really feel to have the DS, do you feel different from before? (top)
When you commit to having the DS it helps if you accept from the start that you will be undergoing a very lengthy process. Your idea of what you think the DS will be like, may be in the cold light of reality very very different, despite all your careful research. Healing must take place on many many levels...some you had no idea even existed :-)
I did feel very internally rearranged and weird for a number of months...around 4 or 5 months and this feeling came and went, diminishing with time. It was not a painful feeling in anyway, mostly just a sense of mild discomfort. Now I feel very at home with my surgery and have a sense of relaxation...but occasionally if I am overly tired, for example, I do experience a direct tension in my abdomen. However I am not sure if this is'nt entirely normal even for people who do not have the DS.
I remember at about 5 months out wondering if I would ever feel 'normal' again and I am happy to say that I do now. It can just take a while for your guts to sit well with you again.
Q. Can you eat out? (top)
I most certainly can! Happily most of the time there is ample protein to eat and I just pick away at my food merrily. I often explain my situation to other people to prevent my plate being overloaded with veggies, salad or carbs...although usually I have a little of those foodstuffs too!
Very occassionally no protein is served, mostly when vegans are cooking ...and because I need around 4 protein meals a day I am not willing to eat in a nutritionally empty way for myself. In order not to embarress the host, I just embark on a mini taste session...just enough to half fill me & then out of sight on the way home I eat a protein bar. The other thing I do is simply take a rich in protein drink with me to sip at the table and then eat all manner of greens and veggies with no impact on my health.
It takes me longer to eat than most people. I eat around half of what they do in the same time. This does not worry me, I just chew well and enjoy. I encourage others to go on to the next courses while I stay with my choice. Again, a simple explanation is fine. People do understand.
In restaurants I usually just have a starter or two depending on my hunger levels. I am a very cheap date!
Q. When can I drink alcohol again? (top)
It's not advisable at all during the two year window for weightloss. Your liver is under a lot of strain, and it would be silly to stress it further. It is potentially risky. Some people report having the very occassional light drink at about eighteen months out. Very little is required to make you tipsy, so dilute and go slow if you really must have one!
Q. How much food do you eat at 10 months out of surgery? (top)
It varies greatly from day to day. But I always eat around 100 grams of protein no matter what and even if that is all I eat. I also take 12 multivitamins as these are sometimes my veggies! Here's an example of what I ate today:
Breakfast: (around 25 grams of protein)
- 3 Scrambled eggs x3
- A rasher of bacon
- Half a tomato.
Snack: (5 grams protein)
- Handful of cashew nuts
- 2 peanut butter biscuits
Lunch: (45 grams protein)
- Toasted Cheese Sandwich
- protein drink (35 grams)
- Quarter apple
Snack: (10 grams protein)
- 6 slices of salami
- 1 small crispbread
- 2 ample slices of chedder cheese
Dinner: (35 grams protein)
- Mild Lamb Curry (an M&S ready cooked meal size-both portions!),
- 1 tablespoon of rice
- 1 tablespoon of veggies
- Fruit salad (a small bowl) with pannecotta and cream
Snack: (8 grams protein)
- Apricot and honey Yogurt
- Peanut M&M's -a handful
TOTAL PROTEIN: 128 grams
Please note this is just a rough estimate on my part and initially you must count up accurately. I just roughly aim for a hundred grams at this stage.
Today was a 'good day' and I have many of these. On a 'hungry day' I can eat even more than above. On 'other days' I just eat the protein bits and am quite satisfied to do this. On 'bad days' which only happen if I am ill, I drink two protein drinks and eat a light protein meal usually, eggs or white fish.
I don't eat much sugar as it tastes too sweet for me nowadays, but I still have a few daily spoons in my tea and love a good chocolate from time to time. I think one should taste a bit of junk now and then! I can now eat just a few lovely blocks of choc (yes, I am an unashamed chocoholic)...but then leave it lying around for ages! Once I would have compulsively eaten the entire bar in one or two sittings.
My stomach is smaller than average due to polyps removal. So I presume if you have the normal cc, you will eat more than me!
Finally, I have noticed that those DSers who eat well and large amounts of healthy food, seem to be by far the healthiest. So I encourage eating as a very healthy pasttime for the DSer!
Q. How often do we need blood labs? (top)
In the first year you need to go every 3 months for comprehensive tests including vitamin panels and zinc. Thereafter, unless there is a problem, you need to do it twice a year.
This has caused me problems and no end of stress as I am quite strict about being compliant and work to optimise my health.
Q. What might happen if we don't take our supplements & comply? (top)
Please bear in mind that unfortunately we cannot blame everything on non compliance and anyone suffering like this needs checking that the DS was surgically put into place properly & there has been no major freedom of license on the surgeons part.
This is a DS patient's story:
First, let me re-introduce myself. I had the Duodenal Switch surgery over 5 years ago. I was 342 pounds and I now weigh 118 pounds. I'm 5ft7 and a recent law school graduate. It is truly a miracle that I graduated law school considering what I went through over the past 3 years.
I want to tell you I am a big advocate of the DS surgery. In fact, I started this list over 5 years ago. But, I can't stress enough the importance of post follow-up. I will try and tell my story without dragging it out or boring you all to death.
For the first year after surgery, life was great. I was losing weight so quickly and so happy with the results. I didn't always take my vitamins. In fact, I would go weeks without popping even one multivitamin. I didn't care. I was thin and I was happy.
Year number two and three- I was having "mental" problems. I became agitated easily. I was full of anxiety. I was very depressed. I was diagnosed as severely depressed and went on Wellbutrin. My psych doc summed up my depression as an inability to handle life since I previously used food as a tool for coping. Some clues that something was seriously wrong with me... Orthostatic Hypotension- Basically, when I would quickly stand up my heart rate would go up and my blood pressure would severely drop. Fatigue- I still felt like I was 342 pounds. I had trouble lifting my body up. Joint pain- My knees hurt! And later on, everything would hurt.
(some of you probably already clued in on one part of my future diagnosis but just wait)
Here is the 1st big symptom- rash. In fact, my first full body rash came during a fashion show. I had a horrible rash from neck to my ankles. It finally went away with prednisone treatment.
2nd big symptom- I had a false positive on a HIV test. I took an HIV test (ERISA) and it came up positive. I literally had a mental breakdown. I thought my life was over. Then (thank god) I had the Western Blot test. It came up negative. (On a side note, I've had three followup Western Blot tests-all negative).
If you doubt me, go back in the archives, you'll see numerous email posts regarding the above symptoms and my general concern.
But the real kicker is my blood tests were coming up ok. Not great but ok. I was always close to the minimum needed to be acceptable. Every so often my B12 would come out slightly low and my doc would encourage me to take more B12.
I would go to my doc or call my surgeon or talk to my pdoc about my symptoms. I would tell about whatever symptom was bothering me the most at the time, but in general I wouldn't put all the symptoms together. None of my doctors asked about whether I was having other symptoms.
Don't let me forget another biggie here- I had a revision in the year 2000. I was losing too much weight. After the surgery, I had lots of blood loss and in fact, I had to be put on an iron drip. Important point for later.
Congrats if you're still reading. Sorry if I'm boring you.
Now we are coming to year four and five. I'm diagnosed as Bipolar rapid cycling mixed state. Boy that is a mouth full. So, I'm actually happy. I'm relieved I have an "excuse" for my declining mental condition. I'm struggling like crazy with my short term memory. I actually get psychotic and start hitting myself (usually with brushes or other stick like objects- now when I think about it, I'm embarressed). I can't retrieve simple words even though I can "see" them in my brain. My intelligence is still excellent (no I'm not patting myself on the back) but I can't remember how to spell anything. So, here I am a girl with bipolar disorder (so I think). Wrong diagnosis - I would find out later.
I should mention that after year three I am religious about taking my vitamins. I take fat soluable multivitamins plus supplemental B12, potassium, calcium citrate, B100, fish oils, trace minerals and folic acid.
My joint pain is getting worse. In fact, I became addicted to Norco (Vicodin but twice the strength). The Norco not only helped the joint pain but it calmed my mental imbalance. By the way, excuse the misspellings. I still have a horrible time with spelling words. Luckily, I went to my sister and admitted my addiction. I flew to Florida where she lived on an Air Force Base (she's a Captain) and I spent one week going cold turkey and thru horrible withdrawals.
My fatigue was getting worse. I was missing classes and I couldn't concentrate worth anything. Luckily, I had an incredible dean at my law school who really recognized that there was something wrong with me. I had gone from a 4.0 undergrad to a barely passing law student.
I was getting night sweats. My face was always feeling hot but I had no tempurture (see I know that word is spelled wrong but I for the life of me, can't remember how to spell it correctly). I was getting muscle spasms so bad at night (also known as charlie horses) in my calf muscles, I would wake up screaming in pain. I was experiencing dental and gum problems as well.
Finally, the fatigue became so bad, I was unable to get out of bed. I would get up and go to the bathroom and be so exhausted, I would fall back in bed. The last straw came when I tried to get out of bed and fainted. I hit my head on the corner of my desk and it resulted in a huge gash on my head. My mom found me unconscious on the floor hours later and I was rushed to the hospital.
Thank god I found a wonderful doctor while in the hospital. She spent an hour going over six years of medical records and asking me about symptoms that went back from the beginning of my surgery.
I was diagnosed as having systemic lupus erthematosus, secondary sjogren's disease syndrome, peripheral neurophathy, hypoglycemia and pernicious anemia. I think that is everything but the diseases are a blur at this point since it just doesn't really make a difference what the disease is called as long as you get the right treatment.
I found out alot about blood work at that point. For example, pernicious anemia (B12 deficiency) is often misdiagnosed because a B12 level might show up as "normal" on bloodwork (at the lower limits) but when combined with a folate and zinc deficiency can cause what is called "megaloblastic madness". In other words, the pernicious anemia was causing dementia that was almost neuropsychiatrically irreversible. So, I was truly losing my mind.
I'm not going to go disease by disease and tell you what causes what symptom since that would mean this email would be even longer (god help us if this thing got any longer).
I want to tell you what the end result is- I am still suffering from extreme fatigue. I barely can get out of bed and my memory is shot, my spelling sucks, and my cognitive skills are horrible. Everytime I blow my nose it bleeds. My ears always feel like I just walked off a plane. I sweat like I just ran a marathon and I have no life. I'm down to my last $400. I couldn't go to my own law school graduation because I was so fatigued. I've been in the doctor's office 6 times in the past couple months for dehydration. I've been trying very hard to get up and move about and I've been paying the price. I need to get well soon so I can get a job. Let alone work as an attorney.
Even though I'm still very ill, I am hopeful. After numerous tests (and I mean gross tests as well as numerous blood tests), the docs have determined that I malabsorb at such a rate that vitamins don't even get a chance to do their job in my body. I've been told over and over by the specialists that my disorders/diseases are definately an indirect result of my surgery by way of severe malabsorption and nutriutional deficiency.
I don't blame my surgeon. I don't blame any of my doctors. I blame myself. I am (or was) a smart person and should have realized earlier on that the accumulation of my symptoms was something more serious.
And if you would ask me if I would have had the DS surgery again. I would say no. The pain of being fat both physically and mentally doesn't compare to the joint pain and the muscle pain I have now and watching myself mentally fall apart.
Please don't attack me or tell me my medical terminology is wrong, etc. I don't have the energy. I just hope I may have helped one person be more diligent about their follow up. Whether it is one year after surgery or 10 years later!
Hugs to you all.
Another letter from the patient above...
I bet some of you are wishing I wouldn't post this since my updates seem to scare lots of people but here I go anyways.
First, since the last time I chatted with you all, I'm doing better.
Even though the above "looks" bad, it's much better than it was. Obviously, I'm tired all the time. I have plenty of body aches but my mental functioning has improved so much. In fact, I'm taking the Bar exam tommorow so wish me luck (I'm taking a study break to write this).
I no longer regret having the surgery. Who knows where I would have been if I didn't have the surgery. I've learned to have no regrets and to look forward. In fact, I'm for the first time in my life at peace and hopeful about a better future.
Oh, I guess I should share the stats for the people who don't know me. Had the DS with in 1998- high weight of 342 (though I think my weight at the time of surgery was 304), had a revision in 2000 (too much weight loss) and now in 2004, I weigh 133.
I've had lots of problems with vitamin levels. At the beginning, you could entirely blame me for lack of compliance but now, I'm the vitamin soldier. I take vitamins like it's my sole duty in life. I see a nutritionist on a weekly basis and my food is mapped out to give me the biggest vitamin benefit possible. Plus I take liquid multivitamins, drink protein drinks, take B12 shots and drink tasty liquid calcium. Food is about survival for me. I don't gain any pleasure from it because it's like a medicine I have to take according to what my body needs at the time.
Thats all for now. I have to go back to studying. Take care everyone...
Q. Did you lose your hair and can it be prevented? (top)
Yes, I lost half of my hair. It was pretty scary and I did think I might go bald a few times. Standing in the shower with a fistful of hair was not particularly good for my mental health. I had my worst loss at about 5 months out and it continued until my ninth month. Now I have light regrowth happening.
Extra zinc did not help this loss, nor did various shampoo's I tried in an effort to curb it. I suggest if you have long hair like myself that you go and get a layered cut that will conceal new growth as well as impart the illusion of fullness!
At 14 months out I can update this and say that my hair is now feeling a lot fuller and getting much more like it's old self!
UPDATE - at two years my hair is in good nick - although it has not regained the thickness it was prior to my surgery. I still notice that good nutrition has a strong impact on the condition of my hair -when I slack off with protein in particular - it shows fast!
Please feel free to e-mail me with any questions you might have and I will do my best to answer them on this page. Check back regularly :-)
Please keep in mind that I am not a medical professional and that you should always check with your surgeon if you have any doubts, problems or pain of any kind.