2022 Update

So it has been a few years since my gastric sleeve weight loss surgery. How am I going?

About 18 months after the surgery, I started getting some strange symptoms that would come and go. It was maddening.

The symptoms increased and became more debilitating, and my weight started to creep back on.

Over a year, I did every test under the sun with my GP, trying to pin down whether it was “just the pandemic”, or my vitamin levels or something else.

One day, in the middle of an episode, I had a nudge to dig out my blood glucometer that had been gathering dust when my type 2 diabetes had disappeared along with the 3/4 of my stomach during the surgery.

I hit Dr Google and found I was having a sugar low. My blood sugar was hovering at 2.6. I found something sweet in the cupboard, and 15 minutes later, my blood sugar returned to normal … until about an hour later when the symptoms kicked in again.

After a lot more Googling, I suspected I had post-bariatric reactive hypoglycemia (or hypoglycaemia for us Aussies) – called PBH for short.

I started taking my blood sugar levels every hour I was awake, recording it to track what was happening, and matching it to the timing of my symptoms.

Bingo!

What I found was about 90 minutes after eating or drinking, my blood sugars would crash to a greater or lesser degree depending on what I ate or drank, and the symptoms would kick in.

What are the symptoms of post-bariatric reactive hypoglycaemia?

I had all the textbook symptoms.

  • heart palpitations/irregular heartbeat/heart racing
  • feeling very shaky
  • irritable (my kids tell me I lose my non-swearing filter and become “bitey”)
  • anxious
  • blurry eyes
  • hungry (feeling like I could eat through my pantry)
  • sweating/clammy
  • brain fog/forgetting words
  • dizzy/clumsy
  • sleep problems (waking at 2 am is very common – many people get hypos when they sleep)
  • feeling weak
  • fatigue
  • fainting (yay!)

Luckily I have not gone to the coma or seizures stage, but that is also possible.

Over to the specialists

I saw my GP with my records, and she agreed with my thinking. She referred me to an endocrinologist who ran yet more tests and agreed with the diagnosis.

By this stage, I was having multiple crashes a day and could no longer drive (which, given my fierce independence, was a challenge).

Mild crashes would see me mentally and physically wiped for a few hours until I could have a nap. Bigger crashes or repeated crashes would wipe me out for days.

I had to run my business and work around brain fog and generally would have only 1-2 “good” hours a day when everything was firing as it used to do, followed by blah for the rest of the day.

The endocrinologist referred me to a dietician specialising in PBH to work on food triggers and solutions.

A non-medical summary of post-bariatric hypoglycaemia is either late-stage dumping or insulin resistance (hyperinsulinemia), where your body can’t regulate insulin correctly in your body.

Most patients with post-bariatric hypoglycaemia present within 1-5 years of surgery. Some have symptoms within a few months, and some many years later.

Those with a gastric bypass are more likely to have PBH, although increasing numbers of people who have been sleeved are coming forward with symptoms.

Symptoms typically appear 1-3 hours after a meal and improve when food/drink with glucose is taken.

There are a few key differences between PBH and diabetic reactive hypos.

  • With PBH, your sugars can go from ordinary to crash within 15-30 minutes. It is darn fast!
  • Just having glucose will put you on a merry-go-round of crashes. You need a sugar hit to quickly get back to normal levels and then a protein hit to stabilise your levels.
  • Each person is unique. What works for one may not work for another, so each potential solution has to be tested and adjusted.
  • What works today may not work tomorrow. You can eat and drink the same thing day after day, and your sugar levels will still vary each day. You have to adjust to whatever your body is doing that particular day.

Treatment

Now the bad news if you have a gastric sleeve: If you have PBH, you have it for life,

Some surgeons have reversed gastric bypasses, which resolves PBH in 50-75% of patients (but they gain their weight back). You can’t reverse a sleeve.

The first treatment they try is dietary modification. For me, this started with having to give up all sugar in my teas and coffees and all alcohol. It made no difference.

I then saw a correlation between my sugar levels and my teas and coffees. Despite my endo and dietician being insistent that caffeine should make no difference, I tried giving up all caffeinated drinks (so only decaf coffee and tea). Given that I am a web designer/writer, my life was fueled by caffeine, so losing it was confronting.

It made a difference, but not enough.

I then was moved to a very low carb and sugar diet. Think brown, seedy, and lumpy, which seems to be translated in most manufacturers minds to linseed with everything (not great if you hate the taste of linseed).

If diet modification doesn’t work, there are only a handful of medications you can try, all with nasty side effects (you tend to live “that” scene from Blazing Saddles 24/7).

By this stage, I had depression and anxiety starting to kick in (not knowing if you can safely drive to the corner store or book a client meeting will do that to you).

With my GP’s OK, I went back on St John’s Wort to help manage those issues. Interestingly, a tiny handful of clinical studies show St John’s Wort can suppress the insulin response, but not enough research has been done to prove its effectiveness for PBH.

Many people with PBH have to wear Dexcom or Libre sugar alert monitors to alert them to sugar falls. These are insanely expensive each month (each sensor lasts 14 days and cost over $100 a sensor) and often come with their own problems.

In some PBH cases, people need assistance dogs to alert them and keep them safe, and the people are so debilitated that they can no longer work in paid employment.

On a plus, there are some clinical trials underway in the USA looking at new treatment options, but these are still few and far between.

For me, I have finally found a combination of tablets to stabilise my insulin levels, ways to increase my fluid intake so that I am not as dehydrated, and a diet that keeps my symptoms and depression generally at bay.

I still live a decaf life (yes – I miss all the different incredible coffee blends), and I am now down to one or two mild sugar crashes a week compared to multiple mild to severe crashes each day.

I can now drive again provided I take my blood sugar level before each trip: Under 5 or if I have a bad crash that day and I cannot drive until the next day.

My brain fog is generally under control, but a lousy sugar level will still set me back for days. I am lucky that the pandemic has kept my business quieter than average these past 18 months, which means I can work at my own pace rather than my previous foot-to-the-floor all the time pace.

I am also fortunate to have great clients who understand when my sugars have been acting up and I am not my usual calm and charming self.

I am amazingly lucky that I have two brilliant daughters still living at home who are often more alert to my impending crashes than I am and help keep me safe.

I am still in the care of my GP and specialists as we constantly tweak and adjust things, and my weight has stabilised again at 15kg over my lowest weight point.

There is also a brilliant Facebook support group, Post Bariatric Hypoglycemia, that has people worldwide sharing their experiences and tips as they try to work through their response to the challenges. It contains loads of helpful info and support if you are newly diagnosed.

Would I have the weight loss surgery again?

I no longer have a straightforward answer for that one.

Yes, it made a vast initial difference to my weight and life, but even with all my pre-surgery research, I was unaware that PBH was a potential risk.

I know I am lucky that my PBH is mainly under control for now, and I can live a relatively normal life. Others are not as lucky, and it has totally debilitated them.

Like all surgery, be careful to understand the potential risks and benefits, and discuss everything with your family and loved ones before going ahead.

My journey to surgery

I shakily raised my arm to push the hostess call button above my airline seat. My face flamed with embarrassment as I squeaked out, “Could I please have a seatbelt extender.”

I had spent 10 minutes struggling to get my lap band seatbelt connected, wriggling every which way to try and squeeze my overstuffed girth as far back into my seat as was possible to get the ends to join, but finally admitted a very bitter and public defeat.

Being Too Big

As far back as I can remember, I have always been the “too big” girl. Not content with being nearly 6ft tall, I added on layer after layer of protective padding to deal with life’s knocks and emotional traumas.

I covered it as well as I could with couture from Tents are Us and perfected the art of side on poses and downward selfies to minimise the space I took up on camera.

If you are fat, one of two things happens to you. You either attract Judge Judy’s who beadily assess your every mouthful with a deeply hissed intake of breath, and scathingly carp that fat is a character flaw, or you become invisible, and people’s eyes skate over and around you as if you are wrapped in a permanent cloak of invisibility.

For the most part, I was invisible. If there were two people in a shop, I would always be served second (and often only after I coughed and got the attention of the shop assistant who genuinely seemed startled that anyone else was there).

People would accidentally bump into me wherever I walked, surprised that their path was not clear as they made an angled beeline directly towards me.

Clothes shopping was a symphony in black, black or black, no matter the season as after all, fat women apparently only like to wear either black or massively coloured patterns suited more to nightmare clowns.

If I went to the average large shopping mall such as Chermside, I could find clothes that fit in just two stores. The rest simply gave pitying glances and “We don’t stock anything in your size” responses.

Shame Shame Shame

My flight to Karratha with my seatbelt shame was just yet in another in lifelong series of wounds to the soul and the life of being a fat woman.

If embarrassment or shame were enough to make someone change, I would have been a twig decades ago. But shame is never enough for lasting change.

All shaming someone does is either make someone loathe themselves more and continue their problematic behaviour, or give them a 24-hour boost of piety, followed by another crash accompanied by withering self-criticism of one’s continued failings.

Yes, I had tried every diet under the sun. Jenny Craig turned me into a rage-filled monster. Lite n Easy was a brilliant way to create more time to snack later in the evening. 5/2 was good, but I couldn’t get the light days to match with my lifestyle.

I could debate every diet shake on the market with the same aplomb as a wine connoisseur, and found doctor prescribed diet tablets either had me never moving more than 4 metres from the nearest loo, or having me not sleep for days accompanied by racing heart palpitations.

I also tried a week-long fat camp, with superb low-calorie meals and constant exercise. I loved it until I snapped my ACL during netball and ended up with a year of rehabilitation.

at my worst

You know those photos of yourself that make you go “Eew!”? This is my Eew photo and was taken a few weeks after the plane trip.

Giving Up

After that particular experience, I gave up on myself, and told myself that I had run out of options so just give up trying and get used to being fat.

That strategy lasted until last year when my health cascaded out of control. Terrifyingly high blood pressure was accompanied by mature onset diabetes and intense sleep apnoea that made daytime functioning a fog of greyness.

More and more pills and medical monitoring devices started to take over my home and office desk, and I could see myself quickly turning into my wheelchair-bound mother who ended up immobile from lifestyle factors.

I couldn’t see a way out and started to plan which retirement home was in my near future.

Rediscovering Hope

A few months after my embarrassing flight, I saw a different doctor at my medical clinic as my regular doctor was away on maternity leave.

This doctor was very terse and to the point. “You need to lose weight or die within the next few years. You won’t even make it to the nursing home. There is no other choice.”

I felt myself go cold, but it was the next bit that made the difference.

You know that when someone carries a large amount of excess weight that it is often genetically based, and no diet or exercise program will ever keep it off. You are not a failure, and there is nothing wrong with your willpower. I want you to take a look at the SBS TV Series “The Obesity Myth” and then go and see a specialist bariatric surgeon.

I really didn’t want to see the surgeon but decided to take the appointment figuring there was no harm in learning my options.

I then binge-watched The Obesity Myth series, and for the first time in my life I felt the shame and sense of being a permanent failure lift, and felt the tiniest glimmer of hope.

Hope is the number one essential ingredient for change.

Taking the Plunge

I bought out every book on bariatric surgery I could find on Amazon, and then mercilessly quizzed my medical fraternity relatives on the latest research on surgery vs diet options.

What I found is that right now, the best hope for morbidly obese people to lose weight and keep it off was bariatric surgery. That often there is a strong genetic link (I am looking at you mum) to weight gain, and this often combines with psychological and lifestyle factors to get you to a point where your body simply won’t permanently lose the weight no matter what you do. Your body is programmed to fail.

I figured I had tried pretty much every other option to test this new theory out over the past few decades and had proven that nothing lasted more than a few weeks for me, as my weight always rebounded. Perhaps the Obesity Myth had something going for it after all.

So, I went to see the surgeon, who had a very different approach to everything I had tried before.

In his clinic, before he would agree to surgery, you had to regularly see the psychologist who specialised in eating disorders, as well as seeing the dietician and the clinic nurse for blood level screening and monitoring. You also had to attend the support group on a monthly basis to get peer support, and all of this had to be done before surgery.

In other words, they created a full support team around you to give you the best possible surgical, mental and physical chance of changing things. You see, the quality of the experts you call on can determine the results you achieve.

Before the surgery (I had a gastric sleeve), we worked through my problems with food, my emotional food triggers, and then worked out my “big why” for surgery now, explored food plans and options as well as the discussing the experience of what to physically expect post-surgery.

Nothing was left out – I knew exactly, in all the gory detail, all the weird things my body was likely to  throw at me, and I was mentally prepared to deal with each eventuality.

Looking back, their change process was superb. They kept my why at the forefront of the change process (and yes, the airline seatbelt was one of my whys), helped me think through potential problems and coping strategies, repeatedly following up to check that my thinking was still on track and embedded over a number of weeks, and made sure that I clearly knew the process and potential areas of failure.

They worked on getting things right over many weeks before the actual event, and not just a quick one week hit (like the fat camp).

Mental rehearsal and pre-emptive trouble-shooting is an intensely powerful tool in change.

I am not saying that if you are overweight you need to do what I did. Being plus sized had wonderful benefits and many of my friends remain fabulously curvaceous and I love them to bits.

I also know surgery is definitely not for everyone, and I really wish that diet and exercise worked for me. But it didn’t and given the line in the sand by my doctor, this was my last throw of the dice. For me, I needed to lose weight for my health. It was embrace drastic change or die. I chose to change.

My Buddy

However, one of the other best support parts happened by coincidence. At the support group meeting the week before my surgery, I met an amazing woman booked in for surgery the same day as me, the 8th November 2017.

Bev became my surgery buddy, and we shared our nerves on the lead up to the operation, giggled together in pre-op about our stylish gowns, and were in the beds next to each other in recovery. Our first tottering steps from our hospital beds were to visit each other, like teenagers at a sleepover party.

Over the next few weeks, we shared intensely personal information about everything from sleep to poop (don’t ask). Bev was a true inspiration and helped me in more ways than she realises.

Having a buddy to talk with who was going through the same thing at the same time made the massive changes less isolating and much easier to deal with. While being part of a large support group is helpful, and having access to specialists post change is brilliant, nothing beats a one-on-one buddy for raging introverts to get support.

Ready for surgery
Heading into surgery with my incredibly stylish hospital attire

Family & Friends

The other thing that made a massive difference was the unwavering and intense support from my daughters, my brother and his wife.

While originally very sceptical, when they could see I was determined to go ahead, they rose magnificently to the challenge.

They took over the household, filled the freezer with teeny tiny portions of pureed soup made with love, and nurtured me and surrounded me with care during the worst of the healing, allowing me to focus on me for a change.

My youngest daughter, in particular, became my coach, nurse, primary cheer squad and support team all rolled into one. My eldest took over running the business for me and kept it ticking over while I recovered.

Intense change takes focus, energy and time. While not impossible, it is much harder to achieve massive changes without the physical and emotional support of your family, friends and important people in your life.

The healing process

So, what happened? I won’t bore you with the recovery details, suffice to say that you go back to babyhood and start from scratch to gradually get back to solid food over many weeks.

You see, your new stomach is now only the size of a tiny banana, so it takes a bit of getting used to. I had to relearn what to eat, how to eat it and how much to eat.

I had to learn my body signals for being satiated and not stuffed full (I take a sort of a sigh and need to watch for that sigh – ably assisted by my amazing youngest daughter who always spotted it when I tried to ignore it).

What I learned is that what I thought I needed to stay alive was wrong. I only needed a tiny portion of that to stay healthy and happy.

Making mistakes or ignoring my new body came with unpleasant consequences (yes, you vomit until you learn to get it right). However, after ten months I can now eat pretty much anything I like, but just a portion of an entrée sized quantity. And no, you don’t get hungry!

Anyone who says weight loss surgery is easy is talking out of their hat. It is the second hardest thing I have done in life after parenthood. It is a whole of life, irreversible change and is simply a tool rather than a total solution. Yes, you can still go back to pre-weight if you are not careful and try and game the system.

4 stages of weightloss

But what of the other changes?

Grocery shopping is a very different experience now. Every mouthful counts now, so I now choose better options (most of the time).

I still have problems with stress and emotional eating. But I have more strategies and tools in my kit bag for reducing my stress levels and reaching for better snacks. Learning new tools increases your response options.

I monitor my weight daily and have an automatic mental alarm now that triggers if the numbers go the wrong way. What gets measured gets actioned.

Clothes shopping was a massive change. As the weight started to fall off, every single item of clothing (including my shoes) no longer fitted.

My youngest daughter became my personal stylist, as I found I still automatically reached for black concealing clothes.

While my body had changed, my psychology was still that of a fat person, and I needed someone with me to remind me to think new and not old.

It is super easy to remain in old patterns of thinking and routine, and you often need reminders that things have changed.

Finding that I was welcomed and could shop at every women’s clothing store at Chermside was a day of tears. I suddenly had options, and a world of colour opened up before me.

However, even when I changed and tried new shops, I still struggled with finding things that I wanted to wear.

I started to get discouraged with clothes shopping, but my daughter encouraged me to keep going and try new things. Eventually I found that one magical store with one superb assistant who helped me find out things I adored and that worked with my new body.

The lesson of keeping going and persevering until you find the right expert to help you is a constant theme in my experience, not just for weight loss but for everything in life.

Where am I now?

I am 40kg lighter than at this time last year. My surgeon would still like me to lose a bit more, but I have plateaued as I am happy with how I am right now.

I have kept quiet about having surgery until now, simply because I was not ready to deal with negative views while I was so focused on getting my health back in order.

I would love to tell you that I feel much lighter and fitter, but I actually was surprisingly mobile and fit before the weight loss, so there I don’t see any real difference in my energy or physical activity capacity.

On a huge plus, my blood pressure is now normal, my sleep apnoea has gone, as has my diabetes.  I was also one of the incredibly lucky ones whose skin bounced almost back to normal and didn’t turn into a deflated balloon. My doctor and I are both ecstatic!

From the outside looking in

Watching the people’s response around me to my change has been fascinating.

At my local Chamber of Commerce, where I have been a regular for over a decade, it took losing 25kgs before someone asked if I had done something different to my hair as I looked different.

It took until I had lost 30kgs before someone asked about my weight loss and if I was OK (with the subtext that losing this much weight must imply a deathly disease).

What that taught me was no-one outside your immediate circle is interested or notices when you are in the middle of change as they are focused on their own battles. However, once they do finally see the results of your changes, then you can expect questions of how they can achieve the same results.

What I also learned is the importance of minor goals (I set a goal every 5kgs) and celebrating my successes along the way, even if no one else noticed that the goals were met.

Ingrid-Moyle-2018

My best moment?

My ex-husband is an ex for a reason, and I had not seen him in over a year, and my kids had not told him about my surgery.

When my youngest daughter was talking with him on the phone and mentioned we had been clothes shopping that day, his response was, “Has she grown too fat for her clothes? She is the size of a barn”. 

She passed this on to me, so the next day she and I just happened to be at the store he was working in that day, and I wore my skinniest jeans and tightest top when we bumped into him.

The jaw drop and look of shock is permanently and joyfully etched into my mind. Hey, I am now slim but not a saint.

Wrapping up

What I have found by losing 40kgs is that effective change is a blend of many things.

  • Start with hope.
  • An expert support team is vital (Remember, it may take many attempts to find the right team).
  • Know your “why” and keep that front and centre.
  • Mentally rehearse the change process by thinking through all the steps and processes.
  • Pre-emptive trouble-shooting matters. By working through potential pitfalls and how to deal with them before they kick in you minimise failure.
  • Find a change buddy for the early days.
  • Get the support of your immediate family and friends before you start.
  • Have unpleasant consequences for mistakes while you are learning.
  • Set reminders to keep your actions on track and to reflect your new way of thinking and acting.
  • Ensure you have daily monitoring and take corrective action when the alert is triggered.
  • Set small goals and celebrate each win.

It doesn’t matter if your change is weight loss, or something else, these success factors will help make your change work and stick.