The Dreaded Number 2

It’s kind of like the elephant in the room.

You walk in – everyone looks – then tries not to look – then looks again as surreptitiously as possible – then tries not to look. As conversation progresses you note glances here, there – as brief as can be – but glances nonetheless.

There is this myth – this attitude or belief – that has perpetuated itself in the DS post-op (and to a certain extent – the pre-op) community. If you’ve been on the various online groups at all you’ve heard it in varying degrees, undoubtedly. (Well, unless you’ve been completely oblivious.)

Statements like:

“50 pounds gone forever.”

“I’ll never regain any weight. It’s impossible with the DS.”

“You can eat whatever you want and still lose your weight!”

And following those statements all sorts of disparagement for those who have done the unthinkable in the DS community – regained weight. Any weight.

And let me just say here and now – I believe wholeheartedly that the DS, in the right hands – is THE surgery that can give hope to the morbidly obese, and particularly the super morbidly obese, community. Don’t get me wrong. It’s not supposed to NOT work. Granted, you have to factor in surgeons who don’t get it and do more harm than help because of it in the name of giving someone a rocking form of WLS. (:sigh: If only there were some way we could clone Dr. Baltasar and his kind, compassionate, caring, empathetic heart and amazing world-leader skills so that ALL pre-ops could be given THE best chance of kicking their obesity to the curb!)

We (post-ops) all (should) know (and typically say), “Expect a bounce. It should be in the range of 10% of the excess weight you needed to lose. If you go back to the basics, you can lose it.” You will see all sorts of posts from people who are there – experiencing the bounce – and praying to God that’s all it is.

There’s often an underlying hostility toward those with other surgeries – you know, NOT the DS – who have had weight regain. In fact, there’s this level of dismissal – a little bit shockingly, really – of the person as a whole.

Assumptions are made.

Broad sweeping judgments adopted. (Adopted = chosen, embraced as your own.)

Weak moral character.

Weak mental capacity.

Pity.

Belittling is done.

Nasty attitudes and words are dispensed freely.

(Funny how we as a WLS post-op community as a whole are so good at shooting our wounded!)

“Well – if you were dumb enough to have X surgery instead of the DS, then well – there you go….”

I think what bugs me most is that oftentimes these statements are made by relative babies. You know, post-ops who are still infants, really – less than a year post-op. Or toddlers – 1 to 2 years post-op. Preschoolers. Kindergarteners. When you’re a pre-op it feels OLD – really OLD to make it to those amazing post-op milestones – one year post-op, three years post-op, five years post-op. Now those are milestones! What I want to hear is from those who have made it to TEN years post-op. Those are the post-ops who are soundly in the middle of elementary school and are starting to wake up a bit to the world around them – and please dear Lord – have attained some empathy for post-ops for ALL procedures hopefully on some level.

But heaven forbid you are a DS post-op who has regained more than an acceptable bounce amount.

Any of you old timers out there? Do you remember what we used to say? (…and I still believe wholeheartedly to be true!)

“YOU haven’t failed. Your SURGERY has failed you!”

I find myself at this place that is difficult for me to process – on pretty much any level.

There is no way to explain what it’s like being just shy of 9 years post-op and have gotten to goal – something I really believed would never be attainable – a normal BMI and finally understood what it truly felt to feel at home in your body…

…and then….

THIS

Where I am right now.

Or maybe I should say: Back where I am right now.

Obviously – not back to where I started (BMI of 66 at 365 lbs, wheelchair bound, every co-morbidity in the book).

But where I never dreamed I’d be again.

When you head into WLS you have some thoughts – and it’s not that unusual for them to be undisclosed – i.e., very, very private – because – hello!? – who wants to be set up for failure yet again – of where you:

  1. Realistically believe you will “land” after you’ve lost what your surgery can afford you.
  2. Where you sort of hope you’ll land.

and

  1. Where – in your heart of hearts – you long to land.

For me – 125 pounds was where I longed to land.

Not only that – when I was there it was just so RIGHT.

Yes, it was where I needed to land orthopedically speaking. But – really and truly – that’s where I longed to be in my wildest dreams. 135 was my where I hoped I would land. Realistically – even clinically (see Dr. Baltasar’s recently published paper on this – it’s great!) – a sound, realistic expectation would be to land somewhere below 200.

I remember saying to myself, and even aloud. “If only I could get to the place where buying clothes isn’t so hard. You know, where I could open a catalog and find something in a 14 or 16.” (Not the 6X I was in at that time.)

These are the things that you think on when you find yourself HERE….

…back standing on the scale, looking down and seeing that the first number is a 2.Β  The much dreaded number 2.

Somewhere I hoped – okay – I’ll admit it – BELIEVED – I’d never be again.

Oh, it breaks my heart to see it.

Worse – it’s doing horrible things to my mobility, my pain level, my ability to function, stamina, and self-esteem.

I feel fairly confident that I can say this without any reserve: I hate it.

Worse – I’m back to feeling resoundingly like this big, huge, monumental failure.

It makes me want to NOT update here. I mean no one talks about THIS. No one tells what it’s like to go through it. ‘Cause it’s not supposed to be able to happen, right?

Granted – honestly, it does… sometimes. There are reasons, mitigating factors, etc. But sometimes, it’s true – you’ll meet or hear of a DS post-op who finds themselves much in the same place.

If nothing else this experience has taught me to have a completely new level of empathy for/with post-ops (of ANY surgery) who have gone through it, are going through it, will go through it. My heart is breaking for all of us.

And if we’re going to speak the truth here (and why speak at all if not to be brutally honest, right?) – thinking back to that elephant in the room, I feel a bit of empathy for those who encounter me (those of us) who have gone through this. It has to be shocking if someone hasn’t seen me since, oh, December. In December, I weighed 173. Today I weigh 202.

Sometimes I think I should just blurt out, “Yes, it’s true. I have gained a lot of weight. Yes, in just a little bit of time. Yes, it is shocking. Okay – so, what was it you wanted to talk about?” You know – get it out of the way. But why make it all about me? Yes – I think about it at each greeting – but I don’t think it’s always necessary to say the words out loud for the most part.

Here’s the thing – I KNOW in my head that it’s because my DS got killed. (Or as Lisa so aptly said today – I’ve been un-DS’d.) But it doesn’t stop me from feeling as if it’s my fault… somehow. I find myself thinking – more often than not without even realizing that my thoughts had followed that meandering trail – what I could, should, or would have done differently. Logically – I know the truth. My DS got taken down – without my consent – and not only was I super, super, super morbidly obese as a pre-op, I’m the descendant of a whole bunch of folks who were as well. My DS was the first and only time I was able to lose weight and keep it off – ever. Should it shock me or surprise me now that it’s not that there all I have to do is breathe to gain weight? No. But it does. Inexplicably, it does. 😦

So – I’m going to try and do better – to actually say out loud what it’s like to go through this. There are some things on the horizon that could potentially be interesting. I won’t say anything out loud yet, because my heart is just a little bit afraid to hope at this juncture. But – suffice it to say – one more reason to keep current with and to keep my heart open and honest before God.

Advertisements

27 Comments Add yours

  1. Helen says:

    Dina – thanks for being honest and open, in public. At almost 8 years out, my perspective definitely has changed. I’m sorry you’re having to go through this, but as all things, there is a plan in place.

    1. Dina says:

      Thanks Helen – you’re such a doll! *smootch*

  2. Dina, it’s Alison –

    WONDERFUL post. Thank you for it, truly. I’m going to link to it from my blog, if I may.

    Look, I *haven’t* been un-DS’d and I’m at 197 today (up from a low of 151 after surgery). I had my DS 5.5 years ago, I started at 283, and I have had relatively few problems (SHEER LUCK). But I’ve “bounced” just under 40 pounds … and I don’t have the reasons that you do for such a bounce. It’s those carbs I eat, frankly. Yes, I eat my protein … but I’ve gone back to some bad habits. That exceeds the “acceptable” bounce in the DS community. In the WLS community generally. I know it, and I’m amazed by how much I let that bother me. At 283 I would have been thrilled to be 197. You know? Yes, I know you know.

    (Where would I *like* to be? Well, 151 was great but I looked pretty gaunt. 165 looked better but I was really, really anemic more often then. 170? I guess … but what American woman *wants* to be 170 if she can be less? Even this far out, the numbers game is exactly that … a game, a head trip, and a scary one.)

    A friend who had her DS about 8 years ago endured terrible problems, had to get un-DS’d, and she says she’s around 220 now, down from the high 300s where she originally started. “Tell me the truth,” she asked me a couple of months ago with tears in her eyes. “Do I look fat now?”

    Empathy and love — for ourselves, for others, with and without surgery — at all stages of this journey with weight are so critical. I know this, and yet I fall prey to my own demons, too.

    Thank you again! xoxoxo

    1. Dina says:

      Alison – thanks so much for responding. It’s just so – well – helpful, encouraging, affirming, I don’t think I know the right descriptor – to be able to say the truth out loud and know that there are others who get it – you know? We don’t have to be at the exact same place – but just knowing what it feels like – there’s blessing there, right? Thanks for being so open and honest – you bless me!

  3. Becca says:

    Well I had the band and it sure didn’t work for me. I am almost 10 years out, and I am in that 6x. I feel your pain. Really I do. Hugs sweetie, thank you for your honesty.

    1. Dina says:

      Becca – I know – and I’m just so sorry. I hear from lots of folks who had surgery with Emma back in the day when we were post-ops with her (before my insurance company rescued me from her clutches) and see how horribly they’ve done. I really do believe WHO your surgeon is and what their philosophy is about weight as a whole, morbid obesity – specifically, and the different forms of WLS speaks volumes to how things will go. I’m just so sorry that she offered you so much hope – with no way to provide any sort of follow through. You bless me with your willingness to be there, girlfriend! Thank you!

  4. Jill Duncan says:

    Oh, Dina,
    My heart breaks for you, no one, especially not you, should have to have that pain. I know so well that if my DS were to be taken down I would be in your shoes for certain. And you, dear heart, are the reason that I even found out about the DS. I am so thankful for that e-mail.

    At 6 years out, I think that I hear more reasonable comments from DSers than used to be, but I haven’t been as faithful keeping on top of the DS boards or posts lately. I surely hope that the myth of ‘never regain’ is smashed, somehow, because what we do as individuals surely has an impact and our genetics, habits, and other factors absolutely want to put us right back where we started from….even with the DS. It is a wearying fact.

    I know God has a plan for you and He will bring you through this, too. I love you and am so glad to see you ‘stayin’ real’, your voice of honesty and clarity is one we can and have benefited so much from over the years.

    1. Dina says:

      Jill – girlfriend – I just love you so much! πŸ™‚ You are absolutely correct – He is HERE – He alone knows completely what I’m thinking and feeling and loves me completely. He knows how desperately I long for Him to just breathe on me and bring healing of every imagining (gotta love Aslan!). Thanks for standing along side, dear friend! *smootch*

  5. Francois Joubert says:

    Hi Dina

    I am 2 months post-op which would never have happened did I not stumble on your blog. You are a real inspiration, and I believe that you will continue to be.

    My heart breaks for you, I will constantly pray for you!

    Regards
    Francois
    South Africa

    1. Dina says:

      Francois – thanks so much for commenting. Congrats on your milestone – 2 months post-op is a big one – that’s when things start feeling more doable! Thank you so much for keeping me in your prayers – that means so much to me! Blessings!

  6. Maudie says:

    Dina,
    You tell us like it is, strait from your heart. It is your pain that one day may help if we ever have to face the same situation. Those of us that follow you on your journey and are interested in what you are going through, pray that your experience may one day help many. Only but by God’s grace go I… You are in my prayers.

    Have a Blessed Day,
    Florida

    1. Dina says:

      Thanks so much Maudie – your prayers are so precious! Thank you! Bless you!

  7. Liz says:

    Your honesty never ceases to amaze me and I thank you from the very bottom of my heart for your candid insights. In September I will celebrate 10 years post-op and I too, have had the dreaded bounce. I do have thyroid issues and I am finally on the right dose and taking it properly but I do need to take ownership of the food that I so lovingly shove in my mouth. I will always be a ‘fat girl’. I love food too darned much to be any different and I recognize that and I deal with it. I need to get a hold of it since I do have 2 young kids who need an acceptable example of what is and is not good to put in your body. Carbs are key (example: I made TWO loaves of bread this weekend!) and I need to stop. Pushing protein and vitamins are key to my weight loss success along with good steady exercise – see how good I speak it? πŸ™‚

    I cannot and do not know what I weigh simply because it is such a head game for me. But, I do know that my clothes are fitting better and my overall sense of self is going up. Do I wish I was smaller? Yep, but if I am comfortable in my 12’s, I am a happy-happy girl and need look no farther down my road.

    It is unfair you were taken down, Dina and I feel certain there will be justice. God is faithful (and I know you know this) and will reward your diligence and steadfast ways as you follow Him in all you do. Thank you again for being who you are, an inspiration to many now and always.

    All my best,
    Liz

    1. Dina says:

      Liz – you’re so amazing and – well – fabulous. Always there. Always encouraging. Always praying. You bless me in so many ways. THANK YOU! Thanks for continuing to journey along side as a sister before Him who is NEVER caught by surprise!

  8. Lisa says:

    You have shown an amazing amount of courage to put this out there! Thank you.

    1. Dina says:

      Thanks Lisa! πŸ™‚

  9. Tracie says:

    What a well thought out article! I enjoyed reading it, even as it left me with questions. Like, “What do you mean you were “un-DS’ed?” I’m a baby in this life, post op 7 months and currently fighting malnutrition at the hospital where I had the surgery. Please visit my blog, or YouTube to learn the whole shebang.

    Again, thank you for being brutally honest in a community where too often, mistakes, food addictions, vitamin malnourishment, and yes, regain, is swept under the rug. Or at least, doesn’t show up on the forums where DS’ers like me can be educated about it. And if you’re a baby, and all you hang around are other babies, all you have is a room, well, full of babies.

    Good job. I’ve subscribed.

    1. Dina says:

      Hi Tracie! Thanks for stopping by and commenting.

      It’s complicated – but here’s a quick rundown…
      2007 – had my right hip replaced (I’ve had degenerative joint disease for ages)

      Hip replacement caused my left ankle degeneration to accelerate.

      2009 – had to have my left ankle re-built. Spent 8 weeks with toes above the nose. Lots of details but long story short – I wanted off the narcotics and asked to switch over to ibuprofen for pain. Doc said okay – I did – took it for 10 days, and burned 4 holes in my stomach.

      2009/2010 – 5+ months of NPO and TPN, 5 months of multiple IV antibiotics, 8 hospitalizations, about 30 procedures, 2 major surgeries, 1 big time pleural effusion, 1 massive incision infection, 4 months of wound packing, etc later I have NO stomach, no spleen, part of my pancreas, part of my liver, and part of my diaphragm gone. The surgeon who did the complete gastrectomy took my DS down – but didn’t tell me about it until months and months later.

      I think that’s a fair recap. πŸ™‚

      Saw your blog for a few minutes. I’ve got questions, girlfriend! Who is your DS surgeon?

  10. Tracie says:

    To say you’ve had it rough would be a gross understatement. Never, before meeting you, have I heard of an un-DSing. In that regard, I think that after years of learning self discipline, you have done a remarkable job of managing your own weight, sans tool. I know you don’t see it that way, but believe me sweety, since December when you weighed 173lbs, to now at 202, you are doing well, in my opinion.

    I make room for your feelings though, I know it doesn’t feel that way. I would hate to regain, so I’m thinking about that too. Is there a such thing as a “re-DSing?”

    P.S. My surgeon is Dr. M. Roslin, chief of the Bariatric program at Lenox Hill Hospital, NYC.

  11. Tracie says:

    BTW…have you met my friend Angel at http://www.fight4yourlifeonline.org? I was reading your bio, and it mirrors her testimony. If you haven’t, please tell her I referred you.

  12. Maria says:

    Dina,

    My heart goes out to you, thank you for sharing this with us. I am a baby post op only 10 weeks out and It is very rare to see the “ugly” parts of the WLS world. I have been following your blog since before my surgery and your story was very inspiring.

    ❀ Maria

  13. Karen Serbeniuk says:

    Dina, Wow, its been a long time since we connected. I have not been posting for years, but I read everything that you send- plus the blog. First, of all my heart goes out to you and all the “ICKY STUFF” you have had to endure thru the years.

    For those that do not know me, I had my DS with Dr. B in May 2006. I weighed 350 lbs then and had lost weight from 385 (my highest). Recovering from surgery was rough and the trip home to California was hard. But I soon adjusted and started losing the weight. By Jan 2007 I started having problems with my balance, legs and feet would hurt so much, and my cognitive abilities were compromised. My neurologist kept testing my B-12 levels and INSISTING that was the problem. But the labs all came back OK!! By May 2007 I could hardly stand or walk. I was at the lowest weight I would ever get- 170lbs (I am 5’10”) and I looked like a survivor of a war. I was SO SICK! Finally it dawned on me that Dr. B MIGHT know what was wrong- I had not been in touch with him this whole time! He told me to have my B1 tested. That through all of his years in doing the DS only 1 of his patients became deficient in the B1. I had it tested and I had extremely low, almost non- existent levels of B1 I was admitted immediately, had 11 b1 infusions, was there for 2 weeks. Then went to a rehabilition place for 6 weeks. I had to learn to walk all over again, and just handle the basics. I had severe neuropathy in my feet and am in chronic pain. I wear orthodic braces on both legs to help me with the walking. And I can drive! My right foot was not damaged to the point that I cannot use it. Thank God that only happened to my left foot!

    Fast forward to 2009- I accepted the dissapointment of having the B1 deficiency and how that has affected my life. I was weighing about 200 lbs and was happy with that weight. I began to feel exhausted more than my usual fatigue and had some labs done. Long story short- I was diagnosed with chronic mlyoeid leukemia (CML) in 9/2009. Since that time I have been on oral chemotherapy and have needed to switch medications 3 times to find the right chemo for me. I now am on SPRYCL which is working! Praise God!! My life has definitley changed and in the area of the weight – for the better! But I can not work, I am currently waiting to be approved for SSI. I can do a limited amount of errands, Dr. appts and manage 2 teenage girls (16, 17yrs old). I am trying to start a cancer support group for christian women here in my area. I thank the Lord for saving my life thru the DS. I have nothing but high praise and respect for Dr. B. Is my life what I thought it would be like after the surgery?? No. But it is what it is- and like the Bible says in Jeremaih 29: 11 “For I know the plans I have for you, says the Lord. They are plans for good and not for evil, to give you a future and a hope.”

    I am extremely grateful that I do not need the 26 medications I was on before my surgery to manage the diabetes, high blood pressure, thyroid and others co-morbidites. That I do not have sleep apnea and have to deal with the CPAP anymore. I have learned to deal with the chronic pain with the help of a Pain Specialist Dr., I still have to go get a B1
    shot every 2 weeks (for the rest of my life) and I will be on some form of oral chemo for the rest of my life.

    I am most comfortable with my body at 200 or 210 lbs. I weigh around 217 now and feel a little too pudgy. But I too, can go back into my old coping techniques of stuffing food, or eating too much breads, cheese and chocolate. It is hard! But to encourage EVERYONE of you, from the “babies” to the Older Post-Ops, do the best you can. Be kind and gentle to yourself. Pray and thank God for getting you this far and keeping you alive!! Pursue your dreams and love your families and friends. Smile and laugh! Live Life to the Fullest. Remember you are SPECIAL and precious to others.

    Dina, you have been my mentor and inspiration thru my my whole experience with the DS and my recovery. I know that we have not stay connected – but you have impacted ME and SO MANY others. I will be praying for you!! With much love, Karen

  14. Laura says:

    I thought I was the only person that ever regained weight after a DS. I am positive that no one else has ever regained 100lbs after a DS. But I did. I know exactly how you felt when you got on the scale and saw that 2. I could make a lot of blame. People tell me my surgeon was to blame. Maybe but he didn’t put the refined carbs in my mouth. I am a refined carb addict and I was out of control.
    I also get the distinction of being one of the only fools that had a revision from a DS to a RNY. Not because of the weight gain but because of other issues that probably could have been worked through, especially if I quit the refined carbs, but I didn’t and I was feeling so sick and I wanted a quick fix and my surgeon, who never liked the DS and quit doing them, was more then happy to offer me a revision. Technically, while I have a RNY pouch I still have the DS configuration with a 200cc common channel.
    Fortunately having surgery helped me detox from the refined carbs and I have been without them since. I have taken off the excess weight and I am at my lowest that I got to after my first surgery. In hindsight I realize that I would have been better served with a much smaller sleeve and a longer common channel but my surgeon made my sleeve large and I was always hungry and was able to eat as much as I could pre op.
    Restriction seems to work for me and I have been very lucky to not have any issues whatsoever. I tolerate all foods and I am never sick, although I found out I do dump after having sugar accidentally.
    I feel like an outcast in the DS world because of my pouch. I even felt that you were shunning me because I wrote you an email after my surgery and I never got an answer. I feel like I am some kind of laughingstock both for my regain and my revision.
    Even though I have lost the excess weight I would never in a million years say it is forever. If a DS, with the best stats out there couldn’t help me keep my weight off then nothing can. I know that if I choose to go back to eating refined carbs again I will put back on weight like no tomorrow. I know that I could make the choose to eat them at any time, even today if I wanted to. I don’t live in fear of regaining. In fact I am kind of resigned to the fact that I probably will given my history. I don’t want to but I didn’t want to before, either. I just take it one day at a time.

  15. Jenn White says:

    Just wanted you to know I read your post and I can soooo relate. Wish I had a magic wand. I’d use it on both of us.

    1. Sharon vd Westhuizen says:

      Hi, my heart so goes out to you. only this community can understand the life of the obese and our struggles that we are so judged for. I’m a 5 month DS down only 70 lbs and I’m blaming myself. My common channel is 90 cm. I feel so worried about my sucess with this op that i”m realising is just a tool.
      Sharon

  16. Barb says:

    I happened to stumble across this blog from a link on another DS blog. I have to tell you, I am typing this with tears in my eyes! I am pre-op (hoping to get approved soon) and your story both amazes me and breaks me heart!

    I don’t even know you, but I just want to give you a hug. Even though I am pre-op, I once lost 85lbs on my own and went from a size 20-22 to a size 10. It only lasted for about 5 minutes though. Then the pounds kept creeping back. At first, I thought it was just a few…but then a few more came. Then I started giving myself pep talks like “you will not go over 160, then 170” and so on. Then I refused to get on a scale because I knew I would burst into tears because the news was never good. Once I was back in the 190s I promised myself I would never see the 200s again. I joined a gym, but the pounds kept coming. I eventually gave up, and am now bigger than ever at 260lbs. To say I felt like a failure is an understatement. I was so outgoing when I was thinner and met my husband and so many other people at my lowest weight and that’s the weight they knew me as. So to watch myself get bigger infront of people that never knew me as fat was just another blow. While my weight wasn’t as high as yours, I completly feel your pain!

    I almost think it would have been easier to never lose the weight, than to know how good it feels being smaller, and to lose it. I really have no advice to offer, but I just wanted to let you know that I really appreciate this post and I wish you all the best and that you can find happiness!

  17. Corrie Wynns says:

    Dina-

    I read this as well as some of your other posts, and I, too have SLE with Fibromyalgia. I was diagnosed pre-op after years of wondering what was wrong with me, and prednisone (the only thing that would work at my higher weight) helped get me to my highest of 405. I was 397 on surgery day, 2/25/09 with Dr. Margaret Inman.
    I’m 3 years and one week out as of today. I have had some deficiency issues, even protein malnutrition early out, but have corrected them, thanks to bi-annual labs and a watchful bariatric team and primary doc, as well as educating myself on how to read my own labs, nutrition and supplementation. The DS is the fuel for my attempt to get off disability, and become a Registered Dietitian specializing in pre and post op bariatric nutrition. My former occupation requires a great deal of physical effort, and is not compatible wth my SLE or Fibro.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s