NUTRITION REQUIREMENTS FOR NEW POST OPS.
I am posting this information here as many new dsers find working out their vitamin requirements very daunting. The information here is gathered from books, clippings and the internet over the past few years.
My mentor in instructing & grilling me for almost 4 hours solid the day before surgery is Dr Rafael Blanco. Once he had read me the riot act on complications and risks for the DS, he spelt out the nutrition requirements for DS & gave me medical downloads. He made me promise him three times -lol!- I would comply with the nutrition requirement. He pushed my understanding. When I am tempted to be lax I hear his voice still urging me to be vigilant on the nutrition score. Thanks doc, you are a true pioneer.
DSers in the USA are a great resource for my research as they have a much longer history of the DS than all other countries. One of the people I am indebted to has been a BPD patient for over twelve years. (Hi sharon if you ever read this ...x) she was my inspiration regarding my health on the DS. She brought to my attention that for the very long term it is probably best to ensure that we take in more than the ADEK & calcium and focus on the lesser vitamins and minerals too. She helped me get onto a path & take charge of my health.
I researched nutrition for myself as no one could advise me adequately it seemed. My dietician seemed overwhelmed by the idea that she might have to study the requirements for DSers. I remember how as I told her if she would learn about DS requirements she could be playing a key role for patients that would surely follow my footsteps - she rolled her eyes and said she certainly hoped not! To say my heart sank is an understatement. At the time I was the only DSer in the country - but the tide has turned and may no DSer find themselves sitting before my ex-dietician.
I had a zinc deficiency shortly after surgery that I feel existed pre-surgery and this same dietician could not advise me on a safe extra dosage of zinc, telling me instead that oysters are rich in zinc - true, but in my case one oyster would have been more than I could have mustered- lol! This prompted me to embark on a steep learning curve. (nothing like fear to inspire one :-)) currently I manage my zinc def. symptomatically although this is far from ideal and I do not advise it. Please see my new insert below: When is the DS depressing.
I believe the biggest long term threat to wls surgery, in particular the DS, is lack of adequate supplementation and lack of correct dietary advice. We need to actively prevent the DS being badmouthed and blamed for problems which will come to light in years to come on the malnutrition front, due to poor knowledge of nutrition and bad advice.
An excellent surgery may become shunned and blacklisted by the media. This is why I sound like a broken record sometimes, urging new DSers to really research their nutrition as best they can so they make good sound choices for longterm health.
I am adding nutrition study to my list of hobbies as I am appalled by the lack of solid knowledge available to wls patients. I hear many terrible tales of people for example still using useless calcium -oyster shell derived calcium is hype only (or none at all!!!) despite all the evidence and knowledge available. Some new DS patients tell me of dieticians advising them to first eat carbohydrates - makes my mind boggle - this is potentially dangerous advice for the DS patient.
Nutrition is a vast and often changing subject and I am still learning myself. This page is just a sharing because we DSers hang out together helping each other where we can. I am no expert in paradise! There is a lot of conflicting opinion and my approach has been to try to walk the middle road among all the conflicting data and to find as much medical evidence to a fact as is possible.
I do not claim to be a medical person nor a nutritionist and I strongly recommend that if you are in doubt or malnourished you need to see someone professional.
However, I caution you as my fellow DSer to look hard for the right dietician or nutritionist - for had I followed the advice of my one, by now I might have been seriously deficient in trace minerals among other things. There are very few nutritionists/dieticians specializing in malabsorptive conditions which I find odd considering that these are the people that most desperately need that advice & knowledge.
If your dietician starts preaching to you the merits of the food pyramid...beware! Any discussion about 'balanced diet' - beware! Any insinuation that you could have dieted or excersized your morbid obesity away, ie, 'you are to blame' - walk away! Carbohydrates first - I don't think so!
I am in the process of constantly updating this page so please check back from time to time. This is a work intended to be a guide for DSers. It comes out of my deepest hopes and dreams that in years to come we will be the healthiest most radient wls patients - and an inspiration for those people who are still living in the heartrending shadow of obesity.
WHEN IS THE DS DANGEROUS?
The DS is dangerous when nutrition is played down by a surgeon or dietician. If you don't comply with the nutrition requirements you could become very seriously ill. You could die slowly. It is not my intention here to scare anyone but the fact is that people who admit they stopped taking the nutrients they require have become very seriously ill. We have also sadly lost DSers who did not care for themselves nutritionally.
It's easy when food becomes a chore just to stop eating properly. It is easy when vitamins are so ongoing day in & out just to want to forget about them. We are so not infallible. I am learning this as I progress with my DS. I used to think 'stupid stupid 'people that do not comply - but as time has worn on I have no judgement left. I just feel awesomely sad when we lose a DSer. I know how the slow slip could begin and how one might just feel like giving over to that momentum instead of working with these factors tightly.
VITAMIN DEPLETION MAY ONLY SHOW MONTHS OUT FROM SURGERY. YOU CAN GO A YEAR LOOKING FINE AND THEN SUDDENLY GET A DEFICIENCY. CORRECTING A DEFICIENCY IS NOT ALWAYS A SIMPLE MATTER AS THERE MAY BE DOMINO EFFECTS. VITAMINS AND MINERALS WORK IN SYNERGY WITH EACH OTHER. TRY TO AVOID GETTING IN THIS PREDICAMENT IN THE FIRST PLACE, ALTHOUGH IT MAY NOT ALWAYS BE EASY OR AVOIDABLE, ASK ME - I TAKE 12 CAPSULES DAILY AND I STILL HAVE THE BLESSED ZINC DEF. IT IS PROBABLY TRUE TO SAY THAT DS PATIENTS ARE LIKELY TO GET A DEFICIENCY AT SOME POINT IN TIME - BUT THE TRICK IS TO CATCH IT AS QUICKLY AS POSSIBLE AND TO HAVE A SURGEON WHO CAN HELP YOU RESOLVE IT.
***UPDATE: May 2004
I have recently read an abstract on pubmed. I'm not charmed but I am taking note of it although as far as I am aware some of the authors may be very anti DS. So this could be a reflection of this. I also sound a caution that I know of one of the authors patients. She has been revised to a common channel of 35 cms. As far as I know we have surgeons nervous to do the cc at 75cms...so 35cms? But maybe her anatomy was different from ours . Nonetheless, if this is his norm these results would be unsuprising in my opinion, but then I am no expert. Despite feeling hesitant I am also well aware of the dangers of denial - a danger the WLS patient seems very prone too -understandably. ( It is scary to face some of this stuff I can tell you!).
It terrifies me when certain surgery types have zip insight into their potential complication rate & are defensive about their surgery. Denial is our enemy it prevents us being informed. It prevents us knowing the ropes & it is silly. I am of the opinion (being an opinionated old git!) that we are not here to 'defend' or 'rationalise' our surgery type. We are here to know the ins and outs of the whole caboodle and to work out how we are not going to add ourselves to the list of dangers if there is anyway we can work with our surgery to prevent this. On some issues there are - on others not. So this is why I post this unfortunate possibility here.
Hopefully surgeons that I believe in will counter this with studies of their own and look at highly compliant patients too. Anyway for better or worse here it is - don't have sleepless nights over it - but just know that we better not play around in case, heaven forbid, this is an accurate study. One point raised at the end of the abstract is worth the entire abstract in my book - the very last sentence.
Abstract
Weight loss after biliopancreatic diversion or duodenal switch is due to decreased calorie absorption secondary to fat malabsorption. Fat malabsorption may also cause essential fat-soluble vitamin deficiencies, which may have severe clinical consequences and alter calcium metabolism. Serum vitamins A, D, E, and K, zinc, parathyroid hormone, corrected calcium, and alkaline phosphatase levels were measured in a cohort of patients who had previously undergone biliopancreatic diversion. Two bariatric surgery units were involved in the study: New York University School of Medicine (New York, NY), and the Wesley Medical Center (Brisbane, Australia). A total of 170 patients completed the study. The incidence of vitamin A deficiency was 69%, vitamin K deficiency 68%, and vitamin D deficiency 63% by the fourth year after surgery. The incidence of vitamin E and zinc deficiency did not increase with time after surgery. The incidence of hypocalcemia increased from 15% to 48% over the study period with a corresponding increase in serum parathyroid hormone values in 69% of patients in the fourth postoperative year. There is a progressive increase in the incidence and severity of hypovitaminemia A, D, and K with time after biliopancreatic diversion and duodenal switch. Calcium metabolism is affected with an increasing incidence of secondary hyperparathyrodisim and evidence of increased bone resorption in 3% of patients. Long-term nutritional monitoring is necessary after malabsorptive operations for morbid obesity.
(Slater GH, Ren CJ, Siegel N, Williams T, Barr D, Wolfe B, Dolan K, Fielding GA.)
The flip side of the coin: COMPENSATION
Some people, myself included wonder if as we progress with DS we may in fact need LESS nutrients? I cannot say really - I presume it could differ from person to person. The intestines do compensate - i.e. they grow. As far as I am aware it is not a massive growth that takes place & it cannot ever touch on how normal used to be!
We will always be highly malabsorptive.
I think doing labs throughout ones lifetime will be the truest indicator of how much or little malabsorption there is.
I would never drop my nutritional intake without knowing what the pattern of my labs looked like.
I would definately err on the side of caution.
I would prefer to be lowering my intake of vitamins if my labs read high etc rather than dealing with deficiencies.
Just my thoughts!
THE MIDDLE PATH!
Reading the latest Dr Hess report - well I feel it is fantastic news. Reports on long term regains are low but best of all are the very good longerterm outcomes with his patients of 10 years plus regarding nutritional status. Not one had deficiencies. If in doubt I'd be inclined to stay with the Hess recommendation for vitamins - listed below!
TROUBLE SHOOTING
If you are having severe malabsorptive syndromes please get a second opinion on your surgery. It could be there is a technical problem. CHECK IT OUT! Don't do guesswork if you suspect there is something wrong.
If your surgeon refuses to listen to you go to a gastroenterologist for an independant opinion on your surgery.
Large stomach capacity can mean that at around a year weightloss stalls. Don't hesitate to investigate if you think this is not a plateau. It is difficult - weightloss should slow down ...but no loss at all over say a three month period would have me reaching for a verification that all is well. Bring on the endoscopy please.
If one deals with these things fast then issues can be resolved.
WHEN CAN THE DS BE DEPRESSING?
I thought hard about posting this here but I believe that knowledge is empowering. A lot of people hide their problems away, but I believe that if we share the challenges of the DS we can help each other. 95% of my DS experience is positive for me, and I LOVE it and I would not be without it --- but there is one thing that just wipes the joy away sometimes. For me it is pretty depressing to deal all alone with my zinc deficiency. To surgeons it might just be a zinc deficiency but to me it affects me emotionally as well as physically. For a start it is not nice looking when it flares up. It looks like a bad case of large whiteheads. It covers my forehead and is rough and annoying. It starts it's voyage by feeling like sandpaper and it ends it feeling much the same. The bumps are raised. At the peak they develop a little head but it is not like your regular pimple. More like a hard plug. It feels as though the skin beneath these bumps becomes thick and waxy. This time it was on other areas of my face that it hasn't visited before. I get scared that I won't get a resolve on it one day and might have to just live with it.
I realised how affected by it I really am this week when I caught myself doing my good old 'hiding' tactic. I was checking to see no neighbours where around that might see me in this state before nipping out to get some food. It hit me I was doing exactly what I did when I was obese. Trying to hide away. Very upsetting. I also wanted to cancel going to a fundraiser that I was looking forward to going to. So reminiscent of how it was when I was obese.
I finally found papers documenting upper limit for zinc daily dosage and I took the upper limit two days in a row and am currently tapering the dose. The rash is fading mercifully and seems to disappear quite well but I notice I am as pale as a ghost and feel quite exhausted and almost dizzy. Very strange. Could it be that the upper limit zinc dosage is antagonising my iron? 
I don't know. I am trying to understand with a shortage of real resources, how to help myself better. I'll get there but it is a blip & I would love to know how come it ALWAYS flares up in the week that I have important social agenda's-lol! Anyway, a lot of DSers don't have deficiencies, but a lot do have & it needs to be addressed better. And quicker. Weeks not months! In the UK we can struggle on for months.
This is not easy to deal with. It would be a huge help and a good start if the DS surgeons/dieticians could consider getting together safe dosage lists for us patients on the Vits & Minerals.
Here is a picture of my rash. Please click on it to enlarge as it shows more clearly on the large version. Due to the fact it is skin coloured except when I rub it - it does'nt look as bad as it is in real life. When it returns as it will no doubt, I will try to get a better picture of it. Thankfully I so far manage it symtomatically and it goes. But never without a sense of fear, despair and frustration on my part. I wonder if my zinc dosages are potentially harmful to my body. I dream one day I will tell you it is being properly medically handled and I have won the battle! It is sometimes very low grade but occassionally(once every 2 months or so) for no reason I can determine, it flares up like a bad nightmare leaving me feeling like a zitty primadonna!
I always wanted to relive my teenage years, but just not like this!
Bear in mind that here I am describing a zinc deficiency that is not in the high order of severe deficiencies. In fact as it is quite common one would think there would be solid medical advice on how to handle the beast. The data is barely there and I have looked for months to try and find safe levels of vitamins/minerals for malabsorptive DSers. Consider how it must feel to be battling a low A or D, both of which have potential impact for real damage to the body given enough time.
A few people have e-mailed me to ask why I am recieving no help on it. Firstly it is unpredictable and my surgeon is in Germany. This means it is difficult to book an airticket in advance as I don't know when it will strike. Also, I am loathe to travel looking like I am having an outbreak of infectious disease though this might be my only choice in the long run. My aftercare does not include zinc tests except once inadvertantly it seems, when they picked up the deficiency and told me I had one. Talk about torture - they tell me I have the zinc def. but do nothing to assess how it is progressing, how bad it is etc. Since then they insist they cannot do ADEK or zinc labs for me on the NHS. My GP does not really want to find me help on this one or perhaps she really is at a dead loss. I am currently looking at my options to have these labs done privately.
***UPDATE (May 2004):
I have changed my GP within the practice and have had nothing but support and understanding from my new GP. He has put me on solvazinc as well as tested my zinc levels (in June 2004). The levels were lower limit normal - YAY! I am winning the battle! :-)
We agreed that as I am taking around 150mgs of zinc daily there was almost certainly a deficiency in the first place as I had self diagnosed.
We decided that I stay on my current dose & not up the levels for now. I know of some patients prescribed 250mg's of zinc, but for now my 150gms is serving me.
My skin still feels a bit rough but the rash is not there. My optimism is up. I'm feeling great that there is a doc willing to help me & listen to me & he knows his vitamins too. :-)