I had 75% of my stomach and 100 of my Oesophagus removed for OC in 2014.
Having suffered with hypo's but not knowing what it was (I now do) and reading others here who are suffering and asking what it is? I thought I should write this. I am not a doctor, but have lived thru this and listened to doctors who have not been able to recognise what is happening and simply bundle up as "Dumping Syndrome". I see it as part of Dumping but not exclusive to that ie, you can have a Hypo without all the other bits of dumping and vice versa.
Maybe this will help you here?
I use a freely available low cost blood sugar kit from any high street chemist to measure.
My blood sugar now, typically sits between 4.2 > 4.8.
If I eat or drink anything with simple sugars in it (lets say I eat a Kit Kat) My blood will very quickly rise to 10+. Then at the 90 minute mark, it will plummet as low as 2.3 and in some instances lower!!!
My meter bottoms out at 2.0 then just reads "LO" As I understand it anything under "3" should be considered "dangerous" and most certainly will have brought on, some if not all of these symptoms:
Shaking
Sweating
Nausea
Light Headed
Strobing/Flashing Vision
Staggering/Drunk appearance
Hanging onto lamposts
Collapse!!
As the blood sugar levels drop, we develop what is referred to as "denial" symptoms, where we deny ourselves that anything is wrong and try to soldier on. Being is denial is strange. We do not recognise that we are in denial, but others will. This can also be shown as being angry in our responses to being asked "are you okay?"
All of the above does NOT stop when we go to bed. If you start to get the symptoms? Going for lie down, will not stop your blood from dropping or the symptoms from from occurring. You are now asleep, so will not notice it, but it is still going on, and you can pass out in your sleep!!! Scary stuff, as others will assume that you are simply sleeping when indeed, you are unconscious.
Waking up in the night with soaking bed sheets is a good indicator that you are having hypo's when asleep. You sweat so much that the bed is soaked.
I bought a Freestyle Libre testing kit that continues to operate while we are asleep. That showed that (as suspected) I was having hypos's in my sleep) this kit, alerts you when hypo's are happening during the day, or night, allowing you time react and take glucose.
If you are going hypo? The solution is to take glucose very quickly. I now carry a packet of Dextrose everywhere. Take about six of these and my symptoms recede within 5 minutes.
Now the bad bit:
People die from hypo's and recognising what they are, or that they are having them.
I broke my spine badly, in two places during one collapse. I have also damaged my wrists etc. Some have been known simply, to not wake up from sleep!!
I now treat my hypo's with prescription drugs that slow the sugar intake into the lower gut (Acarbose). Since starting this, and measuring my blood sugar levels, I have managed to avoid any collapse.
It is recognised that people with upper GI surgery (us) will very likely start to be affected by hypo's (Reactive Hypoglycemia) in one form or another.
Some say it is Dumping!! I say, It is not. It is separate part of the Dumping cycle "if" we ingest simple sugars? If we do not, then it is very unlikely we will ever suffer.
I do hope that this helps somebody?
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brucemillar
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Bruce you have helped me to understand what is going on with myself I have spoken to doctors who have not explained anything to me just told to take dextrose when I have an episode ... Thank you for explaining you have helped me so much
That is very sweet (no pun intended) of you to say so. I struggled with this and know many who have also struggled. It is counter intuitive how it all works. Taking sugar to combat sugar - REALLY ??
I collapsed twice before seeking the proper help and seeing a blood specialist who very quickly pointed me at Hypoglycemia.
Put simply and as I understand it.
Our shorter plumbing system shortens the digestive timing that sugar would normally have to get from the stomach to the gut, as it is diluted. So what happens with us, is we pass sugar almost undiluted straight into the gut. The brain thinks this is a call for massive amounts of Insulin and so releases that into our blood. That release makes our glucose levels crash so low that we will pass out (or almost).
By taking sugar/glucose we re-balance the chain.
By careful not to overdose on what you take to rebalance. You can start a chain reaction as you blood goes to high then crashes again.
Other factors that I have found can and do influence/attract hypo's in me:
Eating times - Going too long without eating- usually when I am at work and get distracted.
Stress - As in mental stress, getting annoyed or worked up.
Excercise - Trying to do too much and getting a bit puffed out.
But the single biggest guaranteed way to bring on a hypo for me, is to eat or drink sweet stuff.
One coffee and a cake in Costa, WILL see me on the floor with 1.5 hours (and it has). Other high street chains are available with the same results. M&S cheese scones, the same result BOOM 1.5 hours after I eat one, I will go down, and they do not even sound or taste sweet.
....and I should add. Mrs M has become adept at spotting me into a Hypo. She will notice that I am brusque in my responses, mono-syllabic and almost rude (to my norm). I am unaware that I do this. But she spots it and that has saved me many a tumble.
Hello Bruce in your post earlier today, you said that 75% of your stomach and 100% of your oesophagus was removed by Mr Gossage.If you do not mind me asking, where was the anastomoses done ? Regards
My "Pull Up" is in my neck with the classic "Shark Bite" across my middle. I did NOT have Ivor Lewis. Mr Gossage did a Transchiatal Oesophagectomy. I am told that this is less invasive and does not require any rib damage.
Thanks for the interesting info Bruce. I did have the I.L. procedure.My surgeon-Mr. Oliver Priest, informed me that my anastomoses was in my chest cavity approximately 8 inches down from my incisors. what can we say Bruce, brilliant men-we owe our lives to them. Best regards
There is a brilliance in these people that just makes me sit back and drool. To be so good but ask for no thank you's sets them above so many. When I met James Gossage, I immediately liked the man. I have never changed in that view and never once felt a need to. I count myself so lucky, to be have been able spend social time with him on the golf course. He's good at gold too. I thin it id fair to say that I thank him and his team every single day. They just never gave up or give up. The nurses at St Thomas's were amazing. funny, calming, helpful and brilliant people to be around. What a shame that cancer is what bonds us.
Thanks Bruce I was told It was dumping and not dangerous like being a diabetic!! I will go and get some dextrose tablets. I find too much fat and sugar gives me the so called dumping so try and avoid. But I do like a little bit of chocolate or cake. I don't feel hungry but my family say i get HANGRY when i need food. I try to regulate this by eating little and often.
Thank you for putting this into words. I often think that people believe I am controlling food for some kind of vanity sake when I refuse cake/chocolate bars etc, especially as I am very slim now four years after my IL op.
It took me quite a long time to work for myself what was happening, but happily can occasionally have a tiny bit of cake or ice cream now and close friends and family understand, but am looking forward to sharing the information as you have explained it. My hypos were not as serious as yours have been, but nevertheless debilating in the past if, for instance, a customer gave me a cake with tea whilst working (I'm a gardener) Half an hour later I would be struggling to continue and it took every ounce of concentration to get through the phase when all I wanted to do was lie down on the lawn !!
I will probably get some dextrose as you mention but I feel I have, after a lot of trial and error, come to understand what triggers it for me. Thank you.
I should clarify here. Hypoglycemia is in itself 'probably' not dangerous.
However it is public knowledge that healthy blood glucose levels should remain between 4.0 & 8.0. Anything under 4.0 is considered "unhealthy" and anything under 3.0 is considered "dangerous" with 2.0 being the point at which most humans will go into a coma/unconsciousness.
What I have found is that anything under 3.5 and I will get the all or some of the symptoms I described:
Shaking
Sweats
Hanging onto things
Out of body feeling
Flashing vision
Unconsciousness
The "danger" as I see it is that under 3.5 you get into denial and you do not recognise that you are in denial so will probably refuse help. AT that point you are also likely to be unsteady and appearing drunk. Now given all of that! Is it dangerous? Yes. You could very easily injure yourself or others.
Others on this forum have posted about how they been injured during a hypo.
What I am saying is that GP's (in my experience) look at your blood and say "you are not diabetic" so all is good, you must have dumping syndrome, which they see as "not dangerous"
You may well not be diabetic. But Hypo's can be a part of dumping and can be dangerous. Recognising the symptoms and taking glucose can stop the blood glucose from dropping further. Not taking simple sugars in the first instance, can avoid the symptoms all together.
What adds confusion is the question that we get asked?
Why if sugar causes a hypo, do you take sugar to stop it?
The answer is as I described.
1) The initial intake of sugar causes the blood glucose to rise rapidly. Much faster than a normal intact human.
2) This rapid rise, causes the brain to release insulin at a rapid rate, to combat the rapid rise in sugar.
3) Now your blood sugar drops rapidly and too low to sustain normal functions.
4) You need to balance it out by taking enough sugar/glucose to get it back to its healthy norm (between 4 & 8)
Why us?
Our digestive passage has been massively shortened (simple) the normal digestion times have been shortened with that physical surgery. But our bowel and brain remain intact and operate as they would, before surgery. So sugar hits the gut before, the gut and the brain, expect it to hit.
I sometimes just feel exhausted after eating and there are two outcomes. One is that I crash out heavily for 15-25 minutes, wake up and feel fine. The other is that I crash out, sleep for 15-25 minutes, then my system guides me to the nearest toilet where I have an immediate need to get rid of a liquid mess. I can't tell which is which. Maybe I will buy a blood sugar meter; thanks for the hint.
I can't trace any cause. I can sometimes eat sweet stuff with no problem; other times I feel sick, and dump it all. Sometimes I go to the pub and one pint makes me feel bloated and I crash out. Other times I can sit around at Grace Road, watch the cricket and drink half pint after half pint with no ill effects; until the following morning.
I now find that alcohol just does not work for me ;^(
I am a Golfer (still) and my favourite was Guinness in Industrila quantities after a Sunday round of golf.
Sadly now I find that the same is true of alcohol as is it is of sugar. It goes straight to my head. 1 glass og white wine will see me feeling fairly drunk, Two glasses and I am ready for anything - Parties Ruined, Friends Humiliated, Wives Upset - You get the gist.
My surgeon tells me that this is the same as the Hypo's where the alcohol goes almost straight to the brain via the blood stream with no buffer in between. Akin to injecting neat vodka into your arteries.
It also gives me a weapons grade hangover that reminds me of my chemo. So after many attempts at convincing myself it would get better? I gave in and now don't drink at all.
I miss the social aspect as it does make a difference to those around me as much as it does to me. Turning up sober when everybody else is well oiled was never fun, it is even less so now.
I also struggle with the concept of sitting in the pub drinking coffee. So I jys gave up altogether.
Measuring the blood glucose is a good start to finding out what is happening. The alternative is just not to eat any simple sugar and see if you get any change +/-
I wish you well. do keep us updated.
PS: As a Scot. Cricket always makes me fall asleep anyway ;^)
Thank you Bruce for taking the time to give that really good explanation.
I quite agree that 'dumping syndrome' is not a very helpful name at all. Some doctors refer to 'post-prandial insulin spikes' but that is not so catchy.
The other thing about dangerousness is to be careful about driving. I was once told by a lorry driver who had had this surgery that he had collapsed in a transport café, and that was a very dramatic warning for him. I imagine that snacking whilst driving, or immediately before driving might be an issue as well.
Than you. Some more experience(s) of mine that may answer your points and again (hopefully) help others.
My point in writing this was to (a) Give people the confidence to challenge their own medical teams, wh "can" be very dismissive of what can be a very serious side effect of our surgery and shortened digestive system. I hear to many people saying their GP's etc dismissed this as "dumping syndrome" . I do not believe that it is "dumping syndrome - but it cleary has it's routes in tat description.
Why?
1) Some get the classic dumping without the hypo's?
2) Some get the hypo's but not the dumping.
3) Some get both.
4) Most change over time or simply develop a coping strategy.
I am a mix of 4 & 2 and am at the three year post op. But I spent 1.5 years being told it was "just dumping". This despite my surgeon who clearly recognised it as a separate issue to the dumping. It could be fatal. Stock dumping would not qualify for that description.
Finally and most importantly. It is manageable and treatable. Life need not be about accepting that we "hang onto lamp posts" after eating.
With regards to the driving license.
This is tricky in a public forum!! Technically if you have collapsed? YOU or your GP should be notifying the DVLA, who will revoke your license until you can prove that you are not a risk. That is the "book version of what should happen" We need no reminder of the Harry Clarke (the Glasgow Bin Lorry Driver).
BY treating and managing this!! We need not be without our license or the fear of a collapse when at the wheel.
For a while I purchased and used a "Freestyle Libre" Blood testing kit. This outputs to a handheld meter or Smartphone in real time and alerts us to where our blood glucose levels are at, thus enabling us to take proactive glucose or food/drink to avoid a crash. It is as yet not available on the NHS and I spent a year pushing for it to be made available. It is hoped that it soon will be.
It is a small (£1.00 coin sized) sensor that you wear on your upper arm 24x7 and it transmits constant;y to a Smartphone or meter (or both). It also continues to measure when we are asleep (big step forward here) and that makes for really interesting results. I could see that every single night my blood dropped (in sleep) to under 3 = Dangerous.
Sadly it is very expensive to buy the patches £50 each and they last for 10 days. YOU can ask your GP to complete an NHS funding request? I did and failed. I also pursued this via a diabetic consultant (failed) my Oncologist (Failed) you get the drift. However over 50.000 people in the UK are now using this, so it will happen and it is fabulous technology and use of.
I am happy to share my findings with anybody here either in private or by way of reply on here.
Don't be shy people. It's your body and your right to have a good quality of life without hanging onto lamp posts..
I just started using the Dexcom G6 and it works very well for alerting me when I am headed for low blood sugar. I am hoping that as I get better at using this my "Dumping" will disappear. This impacts so much on our quality of life after the operation. We have to understand how our new plumbing works and how to adjust accordingly. Knowledge is power, and with this device I have more knowledge of what is going on inside so I can adjust outside influences.
Thank you once again for going into such detailed info regarding this unpredictable syndrome. I too suffer with all the symptoms you describe and I am on Acarbose after doing my own research and asking my GP to prescribe it. It seems that the Dr's are unaware of the post op problems of the many issues we mention and the only help available is from the likes of yourself and others on this Forum I salute and thank you all for taking the time to address and help others.
I have had type 1 diabetes (do not produce any insulin so rely on insulin injections) - I also had a total esophagectomy over 10.5 years ago - I get several hypos on a daily basis from this as it is far harder to balance my blood sugars but I am glad to have had the surgery so that I can have a chance to enjoy being a mother to my 6 and 7 year old and not to have to look back.
I have been using it for 274 days at this stage and it has made a huge difference in the things that I can do now - the only bad thing about it is the cost but my children can 'scan mummy' now, I love it.
I'm so happy you wrote this. Having no stomach at all (9/2014) I went through the same "university " of learning hard way that hypoglycemia is a small part of dumping and very dangerous.
....collecting little pieces of info from endocrinologists, oncologists, dietitians, primary care docs and endless expensive tests that no insurance covers.
It took me years to work out eating schedule (every 1.5 hr) and Select food.
The only concern that I have now is that we consume too much sugary stuff - cancer cells like sugar.
Thank you. Yes the endless round of specialists and opinions is trying, to say the least. I also now find I get massive sugar cravings that I never had pre-surgery. I am sure that there is a link, but get told that it is just me?
I had written this earlier for Violet without realizing that Bruce had waxed so lyrical..........
Hello Violet
Surely by now you must have developed that sixth sense of when a 'wobbly' is impending?
Now, whenever I get that vague feeling of disquiet I immediately (1) sit down (2) crunch 2 or 3 barley sugars.
Sitting down is critical in that it avoids further depletion of already low blood sugar due to exercise; also it keeps one out of harms way as in that condition rational thought has generally vanished, along with the onset of strobing vision etc.
I have other preventive strategies as well. Since Reactive Hypoglycemia is a concomitant of Dumping I never get up from the table before 90 to 120 minutes has elapsed since the last bite. (To avoid an entirely sedentary existence I only eat twice a day and use the enforced idleness to write stuff like this!)
An exacerbating factor for seizure triggering is low blood pressure so I take great care to stand up slowly.
Friends and relatives have been trained that as soon as they see me irrational/stroppy they must see that I institute steps (1) & (2) above.
Following this regimen I have never had any problem whatsoever. Prior to working it out I had been scraped up by ambulance several times, also incurring the smashed vertebrae à la Bruce. All of the foregoing happened in the face of blank incomprehension from all in the NHS.
POSTSCRIPT -re driving.
In the early days before understanding the condition I had been bowling down the M40 at 70 mph and, without appreciable warning, suddenly lost all vision ----totally terrifying.
Bruce thank you so much for posting in such detail .I can't explain the lightbulb moment or relief on reading about the "denial" phase !
I bristled a little at gutless's "surely" ,extrapolating it into " you must be able to control these episodes by now " .And then I wondered why relatives had to be trained to recognise symptoms if it were just a simple business of avoiding triggers . Denial is such a factor ,I always think "if I can just get to the cafe ,just get some water ,just hold on until I get home ...
It's not a simple business ,like haward although alcohol doesn't come into it as I don't drink ,there really seems little connection between my eating and drinking intake and the epsiodes.
Though I'm beginning to see that the manner of eating and drinking is a factor .
In my life and in coping with this cancer I have used the soldiering on approach for so long and with such good effect that it is very much my default setting .But I'm not stupid ,I know I need to listen to my body and to sit down when I feel these episodes coming on .
It's been a huge distress to me that I struggle so much with giving in and stopping when I know this is the right thing to do .To have the "denial" highlighted as a symptom and not yet another of my many flaws is so liberating .
On the other hand it underlines my fear that I can't trust myself to rely on noticing the onset .I don't feel I can face gutless's regime or indeed bruce's of no sugar .But...perhaps I'll try the no sugar now I'm facing up to things .
My episodes are infrequent and I have never lost consciouness .But during them I have violent jerks in my body which result in me making involuntary grunts/noises !
I agree - emotional stress and leaving too long between meals are triggers . As is movement after a hastily eaten snack on an empty system .And fatigue . And I'm sure sugar and carbs .
Bless you bruce for being so generous with your understanding ,especially since you ( and gutless) have had such terrible injuries from this particular side effect .
Thank you for such a lovely post and for explaining your symptoms.
The 'Denial' stage was an eye opener for me. It explained that strange phase between the subliminal, almost unnoticed onset of the hypo and then the absolute feeling of dread that I am going to pass out. I staggered around Victoria Station, knowing things were wrong but thinking that I would be able to catch my 1 hour train ride to get home, then I would be fine, Crazy. I eventually slid down a wall I leaned on for support. A very kind lady recognised my symptoms and rescued me by giving my own Glucose that I always carry. I thanked her by telling her in no uncertain terms that I was absolutely fine!!!
That forced me to start reading more about hypo's. It was then I discovered the 'denial' phase. It can be all consuming or it can be very mild. But it is exactly what it says on the tin "denial".
The anger is is another very common factor with hypo's, where we will react with anger or very curt responses to the mildest of questions. Having friends understand this is a life saver as by the time this starts you really are in denial.
Lying down can help, but falling asleep could be very dangerous as the hypo will continue while you sleep, driving you into a coma that others will mistake for sleep.
I am told (works for me) the best remedy is to take glucose at the earliest opportunity (I carry Dextrose at all times) then eat a meal within 15 minutes to balance out the glucose intake.
We can induce a saw tooth graph in our glucose levels if we overdose on glucose. As the level will go up again then crash again, starting another hypo. 6 Dextrose tablets is about right for me at onset of a hypo.
Stress = adrenaline and adrenaline is recognised as a contributing factor. SO it may not always be obvious where the hypo came from.
Thank you again for all you kind comments. Lets keep sharing our experiences as it may well help others.
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