Dances with DS

Thought I would pop this in here for my own convenience but it might help others too.

A while back I wrote about all the different protein supps I could lay my hands on…the one that has remained with me as my stock cupboard standard is Dymatize Elite. I usually have one in my bag too. It’s the easiest protein boost out. Little effort for big pay off. Frankly it is to my mind the best one out there, it gets my vote for being top dog.

I do admit a soft spot for it as it was the only source of nourishment my mom in law could tolerate when she was in the advanced stages of cancer. I like to think we bought a few precious days extra with her because of it. Everything else caused her to retch or suffer more discomfort - I think that speaks volumes for this product.

I am ordering more today. While browsing I saw this:

https://www.sshealthfoods.com/pages.php?page=lt.powders&details=1114

I really REALLY like the look of it, this might be a super good supp for people struggling tiredness or with deficiencies, also for post op recovery. I like the added functional lipids and the nice Vitamin profile  - I might try it soon.

I have a couple of days with a weird swollen ankle. Looked like an ellies foot for a while. I could not work out why. Labs were in good nick only a few weeks ago. I took extra protein just as insurance…though it is probably unrelated. My best guess is that I have been appalling with my fluid intake again - so I upped that & this morning I am normal again. Thank heavens.

Note to myself:  I have GOT TO GET ON TOP OF MY WATER intake….permanently.

Is it just me or are clothes sizes a mystery to others as well?

After some years of living out of my once very over bought wardrobe I decided it was time to buy a few nice items again. I went on a big clothes buying spree when I hit size 10 (4 years ago) and I overdid it - my wardrobe seriously overflows to this day. So I decided no more - wear it and be done with the clothes syndrome hangover that began the day I walked into monsoon 6 years ago after I lost most of my weight & almost everything fitted me!

But I was too tempted. Mainly because at the carboot last weekend this lady had a rack full of my type of gear (for a change!). I’m not into high street fashion although it looks lovely on some people.  I like my gear understated because I often wear extreme jewellery - big hunks of silver & stone. And I have a belt fetish borne out of the days when I had no waist to speak of, just a huge sheet of fat all around me. These accessories seldom look good on fiddly cuts and patterns. I still like tunics although I have learned that these need very simple fitted cutting to look good on me. Anything pleated or rouched rapidly swamps & enlarges me. Quite odd as these used to slim me down, or so I thought.  I also sometimes like body hugging tops - again simple ones…wearing them confidently did take me a couple of years as when I was large I only ever wore loose tops to try to hide myself in them.

So there she was with  East, older monsoon (not sure I like the new stuff much tbh, although occasionally they still make a nice thing or two), lots of pre-take over ghost, kew -  all beautiful linens and fabrics, almost new condition - who could resist! I began my justifying process - ‘well, it’s probably time I sort out my wardrobe and e-bay some gear to the other ‘artsy farts’ out there’ - ‘at these prices I’ll never find such a good deal again!’ - ‘if I sell off some of my older clothes it will easily pay for this lot’….  

Plus it’s cheap as chips and all of it size 10. Perfect I thought as I bought a veritable black bag full of the stuff…knowing full well I have no space in my wardrobe at all…nada, not even enough for one extra top let alone a bag full of clothes…   

Back home I tried on the trousers and they are all loose. I can still wear them thank goodness, but an 8 might have fitted me better. What’s going on?  I could have sworn I was a size 10.  

Either sizes have got slightly larger since I last bought things - or I have got smaller and am still suffering from my body darned image dysmorphia thingie. Sheesh, I hate thinking I am over it and then finding that might not be the whole  truth… 

Anyway - I have this week cut out for me as I sift and sort clothing for Africa. To add to it all my daughter has left about 4 black bags of her clothing here which she did not want anymore so I have got to sort that out too. I’m a bit fearful I will find things in her pile I love as well!  I’m going to have to be tough & strong and just get it off to our charity shops as fast as possible! 

I can’t believe that I am 8 years old! This is my ninth year of travelling the DS way.

I pre-warn you - I’m going to allow myself to wax lyrical about my DS in this post! Get the bucket ready!

Why? Because for me this has been an incredible surgery - not only because it transformed my body & my life, but because it is still good to live with.   I can give anyone who wants it the run down about the pro’s and con’s of living with the DS and always will, in the conviction that a good pre-op education is important - but I personally have no regrets - not one.

Pre-op I could not have known that 8 years on I would still be thanking the gods I had this surgery as much as I do. I was pretty daunted by the prospect of a re-routed gut, but life had become an unbearable mission for me. A daily struggle of exhaustion, social withdrawal, self hatred.  Pre op, I worried about all the vitamin taking, the possibility of living with diahorrea, the possibility of malnutrition.

Looking back I spent time nervously pondering vile smelly farts & poop as a part of daily life. This is often the  focus of those who want to scare the pants off us pre-op…along with the ridiculous and mean mythology that Dsers stink. I’ve never been able to quite understand it - except that sometimes it has a malicious tone of something resembling envy about it. The reality is any surgery choice that involves malabsorption will cause stinky stools and foul farts in varying degrees.

Sometimes this factor has been a bit of a worry for me when I have needed to stay over at friends houses for example - but I would still choose it a thousand times over having to diet with a surgery, forceful restriction methods, potential vomiting or the possibility of inconsistent or consistent dumping.

Stinky poop is not nice,but for me it’s been nothing as horrendous as I was once primed for by those who know so little about the DS and speak so much.  As for farting - yup, I had my share of those for around 3 years…nowadays I  have less wind than  I had pre-op…but still it is a case of run for cover at times - lol!

I have had the odd spate of diarrhea in the earlier years - it was always manageable. In my later years the pendulum swung and constipation set in. For me this was unexpected and worse than diarrhea & I yearned for a good old DS stool! I was about to accept it as something terrible I’d just have to resign myself to and live with. However then I thought on my mantra so often said to others  - that it is over to us to manage our gut & bowels …and realised I had better get on with practising what I preach.  I relearned that it’s about management even if it is unexpected constipation and I now have an optimal bowel movement again most days.

The fear of malnutrition - this too,  never came to pass & I hope it never will.  I do what it takes and nowadays despite taking many supps/vits, I hardly think about it. It takes seconds to swallow my pills…I’m on autopilot with them. So much so that sometimes I find myself next to the rack where I keep my supplements wondering why I am there at all and then suddenly remembering it is time for another dose!  This year I had two sets of labs done (one for research purposes) and both have come back looking perfectly good, although only when I get my dexa will I truly know if my bones are doing okay.

I have had a few deficiencies and to date they have always been manageable…we are not looking at guaranteed malnutrition syndrome with the DS, unless of course we don’t comply.

It did take me time to adjust to having my DS and along the way I have sometimes had to tweak things or try to find answers to issues I’ve had, but this is my ‘normal’ now & I’m more than content with it. There are days I think I  sound like a self-contented arrogant git to myself… and that there may come a day my DS induced happiness turns to bite me on the bum…but this is my truth so far. At the risk it might yet change I am still going to write it down!

It might just be old age but I find recently those earlier years of adjustment are almost a haze - I have to sit down and purposefully recall how they were.   The DS  has performed on every level for me better than I hoped it would.  I have had some times where my DS & Life converged that were difficult. I have had times my DS got a life of it’s own suddenly and refused to live by my rules where I had to think creatively and act strongly to pull it back in line  .   I also had a bowel obstruction in 2006 - it was not an easy time.

I still worry about possibilities that may or may not come to pass. Are the labs and the actual absorption the same thing?  Do we understand that fat malabsorbed vitamins don’t just mean ADEK - there are others and perhaps some not even yet discovered? What will the longerterm impact be of part of an intestine reserved only for bile flow?  In years to come will we find the DS only bought us more time to the stage of revision so many RNYers find themselves at in recent years? I have no answers  so I accept I am an experiment still in process.

However this is Life - it is a complex phenomena DS or not. Every answer can become the next set of questions.    Life deals out challenges, I know of no one who has lived a life free of challenges. I always think had I not got the obstruction, for example - it might well have been something else!   I’m dead sure I am going to get plenty of challenges in the years to come and some are going to be very difficult to live through. Right now I am dealing (somewhat badly) with the polypy thing that may or may not be related to my surgery.   There are good and bad days. How we choose to deal with them is the thing. I deal with them well sometimes and other times I throw my toys out the cot, or bury my head in true ostrich.

Interwoven with a DS or for that matter, any surgery, there can be very difficult days that consist of effort - of pushing forwards, of trying to get one’s head around a presenting issue. No one told me it was going to be easy and those days that are hard I try to remember this. I also find it helpful to separate out my issues. Sometimes when I have had a bad day or am going through difficult times I blame it on my DS.  Then, when I am able to be more rational I find more often than not, it is not my DS that is the actual problem, it is my attitude or sometimes a shadow side of my personality that is the real issue which somehow became enmeshed in the DS side of my life. The process of deciphering, of untangling is a tough one, it can be painful stripping away ones own delusions - I’d not say otherwise.

There are no guarantees with any WLS. I have yet to find one that leaves every patient it touches in paradise and this includes the DS.  Still,  those researching should  hedge their bets very very carefully. Especially I urge those researching to think longerterm…look at risks of side effects and percentages of revision - one major surgery upfront is better imo than the cost, time, emotional upheaval of revisions that may or may not work at the end of the day.

Post op, a great part of making one’s peace with something like a WLS is in the management of it.  The DS is actually manageable in many ways…it’s not always an easy task but it’s not rocket science either. It means thinking outside the box sometimes, compliancy through good and bad times,  getting professional help, commitment to push through until one finds a solution.  It takes acceptance that management is effort and it’s an effort one might make for a very long time.

I also remember that had it not been for my DS - I might not be even dealing with any detangling issues in life at all.  I think a gratitude- chip was inserted at my surgery…I’ll be bending over tying my shoelace, squeezing into a small space, sitting in a small armchair with loads of space all around me,  hopping out the bath with ease, holding a child on this… MY LAP! , crossing my legs, eating a delicious meal, running after my mischief dog, spending a day on the walk without needing to rest even once, just feeling how my body is aligned how my legs no longer rub raw together, how my arms hang straight instead of being forced sideways…countless things - so many I cannot list them all… when I catch myself thinking thank heavens for this surgery!

I’m still so grateful that I chose the DS to be my surgery.   I remember when I was researching it I found a diagram of it.  I thought to myself - ‘this surgery is science - but it is also art’. The science is still working for me. We don’t fully understand it yet, we still have much to learn about it but it works for the greater majority of DSers I know. The art of the DS  is my freedom. My freedom to run, to be in a crowd with no one staring at me,  the way it balances out my need to eat and yet not to overeat…it gave me back a functioning body and a healthy attitude to food.

8 Years on & I am still on a fascinating learning curve about the DS.  Some theories about it  have changed over the years. More and more the metabolic function of it is being explored beyond just saying ‘it is malabsorptive’. I hope the full extent of it’s metabolic impact will be studied in depth because I believe it is still concealing many  secrets. WLS patients often say pity the surgery could not fix my head.   Imo, the DS DID do something to my head - I’d love to know what exactly.   Once we understand more of exactly how & why it works we might finally create that ‘magic obesity pill’.  

Because of this surgery,  I have energy, my life is worth living for,  my food is tasty stuff, I  have satiation,I’m not stared at or lectured on the benefits of diet and exercise,  I have had 100% EWL. Over 10 stone gone for 8 years. I’m trying to keep my benefits concise here - lol.   In exchange I eat a mound of protein, fats & veggies (the nice part!) pass stinky poop once or twice a day,  take many supplements  and freak out if I get a twinge of pain abdominally thinking my days are done true drama queen style… 

I plan to celebrate my good fortune for a long time yet,  but if it all went pearshaped tomorrow, I would still say I have had a GREAT run in with my DS. 

Even though I’ve never met them I want to thank Professor Scopinaro & Daddy Hess    for creating this surgery in many ways.  I think the men who evolved the BPD/DS had pure genius…as do the many surgeons who have taken the time to add it to their skill sets since then.  It must have been hard at times in the face of the nay-sayers to still forge ahead with what imo still remains today a cutting edge state of the art surgery.

A  big thank you to my surgeon, Prof Weiner in Germany who did my DS and so many other surgeries besides (5 others in all plus my DS!!!)  without any thought other than for my quality of life.  Another very big thank you to Mr Patel here in the UK, who saved my life when my bowel twisted and  and who along with his team continues to monitor me and give me superb aftercare.  Going the longerterm confidently  is made possible for me by your dedication to WLS and I can’t put in words what that means to me.

Last but not least - thank you my dearest family and friends who have stood by me through difficult & easy times.  Especially big thanks to my Pete who has loved me through fat & thin, and who has been my shelter when it has rough, my voice and anchor when it has been touch & go  & the biggest  light in my life always.x

It’s spring and this morning in the garden I found several large slugs crawling about.  Shortly after that I moved a rock in my garden and a frog came darting out from beneath it. Both send chills up my spine because I know they may carry A. Vasorum or lungworm.  It’s a dog killer of the worst kind and this is how we lost Petal, my beautiful bullie pup. http://mssint.com/petal/

I try to eradicate slugs in the garden. I don’t use slug pellets  as these cause many dog deaths (even if they claim to be pet safe).  I use a liquid slug killer that I pour around area’s and plants that slugs are attracted to. But it’s a losing battle. Each year they are back again.

I can’t kill frogs…I just can’t.  I catch them and relocate them to our local canal.  But again - each year they arrive again.

I have HUGE anxieties about losing another dog to this. I deworm my dogs religiously.  However, recently when Ruby possibly picked up a mycotoxin I thought it might still be Vasorum. So fearful am I.  I asked my vet if it could possibly be?  He said could not guarentee it was not.

I have thought on that because it truly floored me. Why can it not be guarenteed?  I deworm - to the point that I often wonder what longerterm repercussions might be despite assurances I have had that there won’t be any.  I clean my garden of dog poop, I discourage foxes in my garden, I try to safely eradicate slugs (but fail), I relocate frogs…what can I do to protect my dogs further?  Even a blade of grass with snail slime on it may infect them. It is impossible to watch them all the time. I feel so powerless.

I ran a google search to see if it is possible for animals to build resistence to the dewormers I use. I was very  unhappy to discover that it seems this might be possible.  No one has ever told me this.  I am not sure what I have read is true - this is internet stuff - but I want to know this from my vet…is it possible?  I admit I am panicking, because if this is true, where do I go to find something to protect my dogs - short of leaving Surrey altogether and relocating to an area that still seems Vasorum free (and is not a rational solution as the bugger is spreading throughout the UK anyway) - but what to do?

All these thoughts because I’m still not 100% happy with the mycotoxin theory - although it does seem highly likely. I noticed today Ruby has some small bruising around her mouth & bruising might just be Vasorum related. Yes, I know I am overly vigilant and yes, I am neurotic, but I always say it’s the natural outcome of holding a dying dog  in your arms watching as the vasorum does horrendous, almost unspeakable things moment by horrible moment to it’s beautiful body. I have a pit of grief in me that can never go away about my pup’s loss.

That said, Ruby-girl is a rough player so it might just be she just banged her mouth, but I can’t take any chances.  I learned through losing Petal that it is vital not to discount the smallest things with lungworm. The slightest cough, the slightest bruising, the slightest changes might mean it is active in a dogs system. It can be so so subtle one could convince oneself it’s just this or that and it will go away. Problem is with Vasorum, things don’t always blow up into clearly visible signs - until it is too late.   I’m taking Ruwbs  to the vet to get this latest thing checked out and to ask my questions…until I have explanations I can hopefully work with.

I am also going to think on using Milbemax this time to deworm her. It’s one I have not used before so if there is a resistance in her - hopefully this will take care of it.

All these thoughts have made me realise if I thought staying on top of this worm just meant regular deworming - I might just be very  mistaken.

I keep tabs on what vasorum is doing around the UK in as much as I can. I see it is still being described as rare. Please tell me - what is with this RARE thing????  Is this the way we describe anything we don’t really understand or summat?  Or perhaps it is that no one wants to scare anyone, kind of like trying to provide a sheltered environment to shield them from the ghastly ever encroaching truth?  Or is it that it is so unpleasant that if we just call it rare instead it might go away?  I honestly get perplexed and frustrated  by this ‘rare’ thing over here in the UK.

It’s not about ’scaring’ anyone it’s about enlightening them, warning them to watch their dogs the best they can,to encourage them to notice anything that might be symptomatic & to deworm (it’s all we have got to fight this thing).

This ‘rare’ nonsense might also mean that research about it is regarded as low priority, which is not a good thing at all. Frankly I don’t buy ‘rare’  for a nano-second.  It may not be all pervasive, it may not be in certain areas (yet) - but it is dangerous. It is life threatening to the dogs we love, and in the UK we need to get real about it now.

We need more research and exposure.  We need to know if the drugs we give our dogs each month are going to help them, how fast they may become resistant to them,  where it is spreading, where it is currently, how many dogs have recently died in an area that has it. We need to know if there is anyway to safely stop it spreading aside from what we already know and to develop much better diagnostics that are affordable for all dog owners. Stool testing is not reliable enough. I’ll still try to do it, but at the end of the day anything not 100% accurate does not fill me with confidence. And it’s very  difficult to do if like Ruby, one’s dog conceals her poop time and her poop area. Lung x-rays are unaffordable for many and it would certainly stretch us heavily this month.

We need to inject money into Angiostrongylus Research like there is no tomorrow -  I know of a  unit in the UK doing amazing work but they need funds desperately.  Right now we have stool testing and 3 drug possibilities and that’s it.  For a nation of dog lovers,  it’s actually appalling.

I think I am going to look at what I can do to raise money to help the research unit.  Please if you have lost your dog to A Vasorum, or if you are willing to  donate anything for research purposes,  I’d be very grateful to hear from you.

Please write to me: jane@weightloss-surgery.com

Here is a website with some basic info about A Vasorum:

http://www.lungworm.co.uk/scripts/pages/en/home.php