I am now 1 year post op in St Thomas's London with the brilliant and lovely James Gossage. I am recovering well and have returned to work full time. I suffer from occasional severe bouts of "reactive hypoglycemia" and am working to control that through diet (no chocolate) and Dextrose (when the symptoms start). I have had two bouts of losing consciousness due to this!! so am now booked to meet a gastroenterologist - Fingers crossed.
Since my surgery (done through my throat and tummy) I have suffered from a bad ache/pain in my rear left back rib cage area. Almost under my left arm. This is at it's worst when walking, which I do a lot of. It is not agony but is very painful at worst and uncomfortable at best. Taking Paracetamol barely touches it, so I have been prescribed Dihydrocodeine - 30mg which do give some relief and enable me to enjoy my dog walks.
Is it okay that I am scoffing Dihydrocodiene tablets (between 4 & 6 per day) to get relief?
Does anybody else suffer from this left rear side pain? and what do you do.
I did try a course of physiotherapy but that gave no gains apart from at the actual time of the physio session. Within a day the pain was back to where it remains i.e. Constant.
I hope not to sound like a moaner. As I 100% enjoy the fact that I am alive. I just want to try to understand normality for me/us and get on with life and having fun.
Since surgery I have seen my second grand daughter arrive. Witnessed my beautiful eldest daughter pass her GCSE's with A's & B's and my gorgeous youngest daughter blossom into a friend and young lady. My wife never quit on me (though many would have done). So I am blessed but with a back ache.
Kind Regards
Bruce
PS: I also scored my first ever hole in one at golf. This after a life time spent trying.
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brucemillar
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Well done for getting the hole in one👍🏻. Sorry I can't be of any help regarding pain in your ribs, maybe someone else on here will be a little more knowledgeable than me.
The usual reason for this shoulder problem is the prolonged period of having an arm raised in an unnatural position during the long operation, but this may not be true for the keyhole surgery that you had. It is either some form of muscle strain, or perhaps nerve damage / pain transferring from something done during surgery. I presume that it was not throwing your arms up in celebration at getting the hole in one!
I presume that it there is no swelling / bruising?
If you have gradually returned to full mobility in your shoulders / trunk it sounds unlikely to be muscle-related, so it may be to do with nerves. I think I would see your GP and/or ask the specialist nurses what they think and try to pin it down, as it is important to get these quality of life issues sorted out properly.
Your insulin levels are probably spiking quite seriously and I suggest asking your GP for a glucose- insulin meter so that you can monitor your levels. There are some information sheets about diet (eg Dumping Syndrome and Low Glycemic Index Food) on the OPA website opa.org.uk/pages/factsheets... I do not think it is just about avoiding chocolate. If you have food that gives a rapid dose of sugary content, or from which your body generates lots of glucose you will get a severe reaction. Your body generates an insulin spike and you then have to have the dextrose as a quick short term fix to restore the balance. If you pass out when you are driving to the golf course, you may not make it. So the general rule of thumb is to eat little and often, and as if you were diabetic.
I do not know about the pills you mention, but if it says it is OK on the leaflet, it should be all right - if in doubt ask the pharmacist - but the real issue is to try and identify the underlying cause.
Thank you for this. I bought my own Blood Glucose Meter - Accu-Chek Mobile. The cassettes for this are £50 each (I kid you not) My GP refuses to prescribe any blood testing cassettes, or equipment as "I am not a diabetic". That is not helpful at all as the cost of testing 4 times per day = £50 per week. That said the cost of hospitalising me each time I collapse must outweigh that cost. Can anybody help out with the GP costs etc?
I am seeing my consultant this Monday to discuss my general condition and will update you on progress.
my doctor gave me one as soon as I told him about the hypos. Then when I changed doctor. my new one gave me another one saying it would be cheaper to supply the test strips. I suggest you get your upper gi team to write to your doctor to inform him you need one. If that fails change doctor as it is obvious he doesn't understand the procedure and consequences of your surgery.
Unless I have this wrong it's the right arm that gets bent back and badly strained during the surgery. The left side shouldn't have this sort of pain. I had stiffness and pain in my right upper arm for 3-4 months after the op but stretching it and using it , though painful , helped over time
The cassettes are indeed very expensive and GPs vary on whether they are willing to prescribe them. But they do measure exactly the thing that you are suffering from! There must be some wording like ' intermittent post feeding hypoglycemic syndrome' that ought to qualify as diabetes for these purposes.
In regards to your question of the wisdom and safety of taking 4-6 tablets daily of DHC, I can address from a position of authority. (Credentials available upon request):
Opiates are best used in the lowest dose necessary for the shortest time necessary. As long as they are used properly and for legitimate medical treatment, there is no problem with taking those tablets daily. Especially given your medical situation, you should not suffer if there is appropriate treatment available. In fact, patients do not heal as well when they are in pain.
As long as the medicine is helping you without causing harm, then do not be afraid to take them. There can be many unexplained reasons for severe pain after such a big operation. \wc
Hi Bruce - I was done at St Thomas's as well .Not by the lovely James Gossage tho I did see him a couple of times .
I get that blasted hypoglocemia thing as well - flashing lights and involuntary jerking !
It settles with glucose tablets but I'm trying to avoid it . I'm having some success with making myself eat every 3 or 4 hours ( whether I want to or not ) ,something slow release . I find it's eating when my stomach is empty that brings it on ,and/or more physical activity than usual .
As for the pain ... I've always found paying to see an osteopath or chiropractor better than seeing an over stretched/hurried physio.
Congrats to your lov ely daughters . They have to work so hard at school these days .
As always such great responses. I am interested in how to stop the Hypo's more than I am in how to turn them off once started. Violet. Slow release foods? By this do you mean slow release sugars like banana's? Do you have any other good foods that work for you?.
Right now my stomach has decided not to empty and I am getting bunged up. Back to the Movicol for a few days.
It all seems to be rather cyclic with me. I am fairly normal for a few weeks then something changes and I get hypo's and constipated.
I have noticed that things that I would have changed before surgery, simply as I wanted a change, now make a huge difference to my lifestyle.
Giving up all alcohol (my choice) led to all sorts of changes in my digestive system. Most of them not to pleasant. Likewise with changes in diet. I am a veggie of some years and now find that I can struggle to stay on an even keel with just a daily intake of veggie food. I am not a big meat fan, so have remained veggie for now, However I am not a fan of feeling ill so will go with what it takes to feel better.
Chris_USA. Thank you for your comments regarding the opiates. I have read that they can cause constipation? So curing one pain can cause another pain. I guess like the food it is all about finding a balance that suits me. But your experiences are invaluable in that quest. Sometimes just knowing that others have the same can make a difference.
It's hard to be general about this. We are all different. At one year post op I was eating three small meals per day and snacking. I have been extremely careful not to limit the type of food I eat except that too much bread and too much sugar is obviously not clever. I think that baked beans may be causing me some problems but I am perservering with them....
For a while I kept a food diary (there's a template on the OPA website) and that showed me that there was no real pattern to my dumping so if , for example , kippers were followed by a swift trip to the WC, I tried kippers again to see what happened. In almost every case there was no repeat. I kept trying and I am now back to the sort of diet I had before the op - three meals per day , widely varying food , no special times for eating; but I do have volume restrictions and my system tells me when I am full.
I am not a diabetic and although I get the spikes from time to time I just go to sleep. I haven't fainted at any point but there have been times when I have simply crashed out hard for 20-30 minutes.
My Surgeon wrote to my GP (at my request) asking that they provide me with the blood testing cassettes on prescription. They have agreed to do so. Just that is a big relief and a positive step.
I am also scheduled to meet with my surgeon this coming Monday evening. He has arranged for me to then meet with a Gastroenterologist to look at the hypo's and see if we can get to the root cause.
Following sound advice in he responses on here I will stop eating after 07:00pm in the evening. I have also now educated myself to carry a stock of Dextrose at all times in every pocket. Now is a good time to buy shares in Dextrose. Measuring my blood sugar each morning before breakfast shows a steady 4.1 > 4.6. MY GP says over 4 is fine and normal?
I remain fairly certain that my decision to stop drinking all alcohol is linked to my onset of hypo's? Could it be that my body is now struggling with the lack of sugar that the alcohol used to provide, by me consuming a few glasses of wine every evening? I stopped drinking suddenly two weeks ago today. This has also seen me get a bit constipated but it is manageable with Movicol.
I will report back after my meetings with my surgeon and the Gastroenterologist but expect to be given similar advice to what you kind people have offered here. I am learning that those who have experienced our changes are the best qualified to give real life experience and advice.
FYI; When my hypo's start they are usually preceded by these warnings:
Light headed. Looking down, then up I get flashing lights. If at this point I take nothing I will rapidly deteriorate into stumbling on my feet (drunk) uncoordinated speech, then fall over and lose consciousness.
My two Siberian Huskies have failed in their brief to go and fetch help when I fall over. They just wander off and settle in the first house that has an open door and food. They do not mention that I have fallen down the well. Hey Ho.
For some time I was having bowel trouble, I either had dumping or constipation, never a normal bowel movement. I described this to my doctor as 'diarrhoea, followed by constipation', he prescribed movicol - to be taken everyday. He said that taking it on a daily basis, the fluids and solids in the bowel would combine thus preventing both constipation and 'diarrhoea like' symptoms. Dumping is a separate issue, but movicol taken daily worked for me except when it was genuine dumping, rather than a separation of fluids and solids. Don't know if that's any help to you but it might be worth trying. I've only had one hypo and fortunately it passed after a sleep.
Are you taking the continus (slow release) prescription?
Whilst you should indeed have proper pain management be aware that
this is addictive and the longer you take it the harder it will be to give it up.
Of more immediate concern is the constipating action of this opioid analgesic.
In the short term DHC (like Loperamide) can be useful in limiting the diarrhea which frequently follows dumping but longer term the intermittent paralysis of the gut's smooth muscle makes it extremely difficult to re-establish a normal,natural bowel habit -- without which your life will be miserable.
Another negative is that DHC lowers CNS activity (how 'lively' your brain 'feels') -
an Hypo has a similar action so the two together could be bad news.
Giving up alcohol whilst taking DHC is mandatory as combined the effects can be powerfully negative.
Are you still driving?
Carry your prescription with you as DHC is a drug for which the police can stop you and carry out a road-side screening.
For our condition the usual procedure is to carry out a thoracotomy (that is an incision across the back giving access to enable the ribs to be parted and so gain entry into to the chest cavity -- the so called Ivor-Lewis operation) This often leaves the patient with considerable,long term pain owing to the amount of mechanical disruption.However if you have had a laparascopic technique it is difficult to see why you are suffering to such an extent.
A thorough investigation by Consultants who are familiar with what has happened to you would be wise.Sadly you have already discovered that the degree of expertise at the GP level is lamentable.
I wrote this about 8 months ago--it may help you to understand and manage this problem -
REF : Hypo's
I wrote this about 8 months ago - it may help you to understand and manage this horrid phenomenon -
REPEATED FROM :- healthunlocked.com/oesophag... - with some edits
It is difficult to explain this syndrome without diagrams ..but here goes :
Dumping is a mechanical problem which can then lead to a bio-chemical problem called hypoglycemia.
Thus there are two distinct stages.
The normal gullet/stomach arrangement is similar to an hockey stick [ resembling the letter 'J' ]. Food descends [not by gravity but by waves of peristalsis or rhythmic squeezing - which explains why pre-op you could eat standing on your head] the long thin pipe (the Oesophagus) and lands at the bottom of an expandable elastic bag (the Stomach - think bagpipes!).
As the bag fills up and expands the level of chyme [liquid food combined with digestive juices] remains below the level of the outlet [the pyloric sphincter] The muscular walls of the bag churn away until sensors detect that the meal has reached a suitable state of digestion (mechanical breakdown and chemical breakdown by saliva,acid and protein enzymes) whereupon the pyloric sphincter relaxes momentarily and a small dollop of chyme (only about 3 ml) is extruded through the opening and on down around the bend into the Duodenum.
The size of each dollop is about one percent of the meal and the frequency of passing is about once a minute so it takes approximately one hour and forty minutes for the entire meal to be passed. All this is variable depending upon how much of which foods were consumed.
It is easy to see that when the stomach has been cut down from a normal capacity of 45-75 ml (empty,resting) & 1000 ml (average meal) & 4000 ml (gorged) to only about 300ml (a mug-full,when fully distended , post op) and also pulled up high into the chest then the foregoing original elegant arrangement has been completely destroyed.
So if you overload the new relatively tiny stomach tube it's retention abilities are over-stretched and the entire contents can suddenly avalanche down.The pyloric sphincter valve cannot be relied upon to act as as a stopper since it is under tension;having been pulled up with the new stomach tube and it's regulating nerve supply (the Vagus) has been cut wholly or partially.
This tendency to avalanche is exacerbated by (1) eating too much (2) eating too fast (3) having too much lubrication, that is liquids and (4) imposing strain by moving about.
Now for stage two.
Waiting downstream in the duodenum is a sophisticated set of taste sensors connected to the brain.
Crudely put when a larger than expected 'dollop' arrives these sensors send 'panic' signals calling for, for instance, extra detergents to deal with detected fats which results in the gall bladder contracting and supplying a shot of bile.
Via a separate pathway and in anticipation of the breakdown of that extra food and its absorption into the blood stream Insulin is secreted by the Pancreas.This secretory response is stronger if the 'avalanche' has an high carbohydrate content- the GI rating. [which is why what you eat has only a partial bearing on the speed and severity of the dumping/hypo complex]
Although osmosis is beginning to play a role at the beginning of the Duodenum the water balance is a very minor factor in the context of blood sugar. Indeed some authorities postulate that it may be helpful given that by drawing water into the intestines so reducing blood volume then blood sugar concentration per volume is increased - so counteracting hypo.
The action of insulin in the blood is to cause cells throughout the body to extract sugar from the blood and store it, ultimately as fat.
If at the onset of dumping blood sugar levels were already low [ say you had had a walk and it was several hours since the last meal ] then the prematurely high levels of Insulin can deplete blood sugar to a point where coma,convulsions and even death can ensue.
The liver's normal,natural Glucagon response will kick in eventually but not in time to avoid the hazards of a seizure or indeed brain damage from prolonged low blood sugar with unconsciousness.
A characteristic of an "hypo " is that we become highly irrational and aggressive.Thus by the time that advanced stage is reached it is very difficult for a third party to intervene to rescue you. You will be unable to swallow sugar in solid or liquid form and the paramedics will struggle to find a vein that isn't collapsed in order to administer injectable Glucagon.
The restorative antidote is sugar,immediately and in any form. Sugar lumps ,Lucozade (caffeine is contra-indicated), whatever ...personally I rely on Werther's Original taken the moment that the presentiments of being light headed and ill-at-ease,are recognized.Hopefully early enough to head off the ensuing symptoms of cold,sweatyness,trembling,disturbed vision. My standard 'dose' is invariably 7 sweets chewed quickly.
I have a plastic bag with this antidote in every coat,in the car,in every room - always within easy reach.
Thus the 5 trigger factors are :- Volume/Speed/Content/Liquidity/Movement.
You can permutate these in any combination to suite your personal circumstances.
I find that I can eat and drink any reasonable volume of anything provided I remain seated for at least 100 minutes after the last mouthful.For me this time interval is critical since it allows for the stomach tube to empty fully at it's normal slow pace. Conversely if I bolt down half a sandwich [carbohydrates] and then get in the car (walking and sitting hunched with compression) to drive somewhere then I will be Hypo within the next two hours.
I have the record of ambulance admissions to A&E and the broken bones from falling and convulsing to evidence the penalties for getting that balance wrong !
PS:
Clearly suggestions from some quarters that we should live our lives as if we are diabetics is, in my opinion an overreaction, particularly since Glaecemic Index is only one actor in the interplay with four additional factors.
You might want to ponder if there is a lesson to be learned from the fact that during 6 weeks observation in hospital and out of boredom, stuffing myself with relatively high GI ward food, I never once went Hypo - why ?
Because I was completely immobilized with a fractured spine ! (Due to a Hypo seizure)
So for me at least movement is the key factor in controlling this horrible condition and that has protected me well for the ensuing 17 years. Of course the enforced hanging around is very tedious but my reading is up-to-date.
Note also that since I no longer eat small and often I can participate in regular meals of any composition with quasi normal portions in family and social situations --- an huge,morale boosting bonus.
I read this when you first posted it and it is just a great explanation that does help me understand the mechanics of what is going on. I have now re-read and gained further assurance that this is what happens to me (in part). I am still not 100% convinced that my Hypo's are directly related eating/dumping. Why? well the last hypo I had, I had not eaten a meal in the couple of hours leading up to the collapse.
I had drunk tea (with sweetner, no sugar)? Could that be seen by my gut as a meal?
Is sweetner seen by the gut as sugar? or does it know it is not sugar? I ask as I have cut out sugar in favour of sweetner in the belief that I was removing sugar and therefore possibly removing hypo's?
Two hours is exactly the time interval it takes for my hypo to develop from something ingested to full-bore wobblies.
Now you pose two very interesting questions.......what is the cause/effect relationship between solid versus liquid and the nutritional content thereof?
I know that to date there has been little or no research done regarding this syndrome.Why? Because there is neither money nor fame in spending time & effort researching a troublesome side effect of the few survivors of our cancer.
HOWEVER, this is changing with the ever increasing prevalence of bariatric surgery for obesity - procedures such as stomach stapling, many of which result in similar symptoms to those we experience.There was even an international conference in Canada on the subject this year.Also there is a new-ish class of Consultant styled NeuroGastroEnterologist dedicated to unraveling the workings of the GI systems' signalling mechanisms [although some of the seminal work was done in dogs before the First World War].
But for the time being we remain in the realms of speculative hypotheses.
My own take is as follows:
1) Timing --- why would it give-or-take 2 hours for an hypo to set in?
The GI Tract evolved as an whole, with each specialised sub-section dependent on what was done to what foodstuffs in the preceding sections.Each foodstuff,Proteins/Fats/Simple and Complex Carbohydrates etc benefits from different processing -- mechanical churning/exposure to acid and enzymes in saliva and stomach secretions and above all to selective timing of these processes.
Two hours is about the time that the average meal stays in the stomach before the simpler products are ready to be sent on down the line to the next stage.Thus the duodenum is pre-programmed to not see much action before two hours has elapsed.
Don't forget that the clock is started by the mere expectation of &/or sight/smell/taste of food!
Perhaps if something arrives 'early' in the duodenum it will be taken by surprise and prematurely and inappropriately stimulated.
Critical in all the foregoing is communication.The GI Tract possesses a complex 'brain' of it's own, independent of but also cross-wired to the head. It appears that the principal mechanism of signalling by this plexus is hormonal.Thus far it has been elucidated that there is a cascade of at least eight different hormones which carry messages up and down the GI Tract with instructions such as 'secrete' or 'contract', or whatever.
It is likely that such a chemical chain reaction is relatively slow. In this context two hours is again about right.
2) Stimulus --- in the normal stomach one of the key detection mechanisms is distention- the feeling of fullness,nausea etc etc. Our synthetic pouches (generally a bulge formed at the bottom end of the tube comprised of cut up and stitched gastric tissue) still possess the cellular capability and sufficient vagus nerve connections to generate an analogous response.
Above I had set out the average volumes of the resting normal stomach, the comfortably fed stomach and the gorged stomach -- an enormous range. We are now confined to a tiny capacity with very little room for expansion.
I have noticed that one large mouthful elicits no response at all but that two will set in train the complete peristaltic reaction, including a message to the rear end "standby for an evacuation!". It was this that forced me to abandon the advice to eat little and often as I was making too many trips to the bathroom.
Perhaps then it is stomach distention itself which plays a role in potentiating an hypo excursion... "Hey guys I feel as if I've just had an huge meal and your going to need a ton of Insulin to deal with what I'm about to send on downstream" ?
What of the difference between solids and liquids and their composition?
I generally only get hypos after breakfast. My never varying menu is Special K with Muesli plus semi skimmed milk and a teaspoon of caster sugar, followed by one slice of wholemeal toast, butter and marmalade together with a mug of strong,milky unsweetened tea. On the face of it that breaks several rules BUT provided I remain seated for my regulation 100 minutes I never get an attack. If however I do stand up, even to answer the phone then, invariably I will have an attack.This seems to confirm that distension alone,without avalanching, even with quite significant carbohydrate content is not enough to bring on the dread reaction.
But if I immediately go out first thing with no food or drink whatsoever I never get an hypo, regardless of how active I may be - so in this scenario there is activity but no distention,no calories,no avalanching.
Conversely, if to slake night time thirst I drink water on waking and then go out without food I will still develop an hypo. This seems to corroborate that the culprit is distension and/or avalanching even though there is no nutritional content whatsoever.It should be noted that in this scenario gastric emptying is not slowed down by the presence of food, as it would have been had a normal meal been ingested.
Because of my fractured spine I had too much at stake to ever risk another seizure and so have taken this matter extremely seriously.
I have tested most theories repeatedly during the past 16 years. Obviously this is a sample of one and completely subjective at that, but I am confident these are the conclusions which I must abide by.
You mentioned artificial sweeteners.
I do not know whether the so-called taste cells ( L and K cells) in the duodenum have the same embryological origin as the receptors on the tip the tongue but the former have been shown to respond in the same manner as the latter to the presence of sucrose,glucose,lactose, and to the artificial sweetener sucralose. Hence it has been inferred that they are identical and most likely to also be activated by other sweeteners. Therefore it is likely that these artificial substances are implicated in the pathways regulating Insulin secretion.
It's probably prudent to avoid them.
NOTE: To some extent this argues against my conjecture above, as regards nutritional content!
I will be posting separately on this topic soon.
On the subject of taste cells elsewhere in the body.The lungs contain 'bitter' receptors,in all likelihood the same as those located in the middle of the tongue. Any one who has had a serious instance of inhalation of reflux will know how hideous is the sensation of 'tasting' acute bitterness deep in the chest.
The pain is indeed in my left had shoulder just under the shoulder blade. If I push my chest out and arch my shoulders back then I can get some relief. This means I walk like Max Wall.
OK I saw my surgeon last night and that was great.
So I can confirm:
1) My op was done through my neck and across my middle (shark bite)
2) No ribs were broken.
There is no evident damage on my CT scans and no obvious swelling etc on a visual check over. So this may well be local nerve pain or even muscle pain. A visit to an osteopath is now on the cards.
I am seeing a Gastroenterologist this week to see if they can help with my passing out. The view here is that my blood glucose is good normally but is spiking abnormally high when I take in sugar. That can be managed and the Gastroenterologist will look at that with me.
I will update again when I have more news. Please keep your thoughts and suggestions coming. They all help (us all).
I measure my blood glucose Between / before and after meals. I do so using a blood glucose meter (Accu Check-Mobile). AT it's lowest it has dropped below 1.6 at it's highest 13.8. I am advised that the norm should be between 4.0 & 8.0.
By diabetic instructions I meant regarding when the manufacturer says to measure with your meter.
The critical aspect is the timing of the peaks and troughs.This will enable you to establish whether you get 'early' or 'late' dumping or both.
The causes and effects of the two types are subtly different and each requires a tailored approach.
I suggest you consider metering (1) before (2) at 1 hour after (3) at 2 hours after and (4) at 3 hours after and record the results - ideally on a chart.
The pattern thus revealed will indicate what precisely is the problem and then you will be on the road to a solution.
It is confirmed by my meter & my own timings along with my surgeon as "late dumping". However what is causing the concern is the random nature and dramatic impact of this "late dumping " i.e. My meter does graph and plot as well as display target ranges etc. This shows that all is reasonably normal (usually between 3.7 & 8.0) I do test before & after meals in rough intervals of 1.5 hours before & after.
My food diary suggests that I have eaten consistently with no real variation in the food type. But still I have had these sudden bouts of unconsciousness and the resultant biting through of my tongue, bashes to head etc. What we do know is this has always happened with 2 hours maximum of my last food intake.
I now have an appointment confirmed with Gastroenterologist at London Bridge on 02nd October. I also (like you) make sure that I carry Dextros in every pair of trousers, bag, coat etc. At the first sign of any wobbly behaviour I take a few of these. That does stop any passing out. What we are trying to look at now, is if this is just what it is and I need to live like this? or can I be treated in any way that removes the constant fear of passing out.
You have said that not only are you back at work but also that your main leisure activity is going for long walks.
This is highly commendable and I confess to being not a little envious.
But I think you may be overreaching yourself particularly as you are only one year post-op.
I will try to justify that impertinence.
Do you use a laptop?
This is being written on an i7 machine and it is such a guzzler that the battery lasts a mere 70 minutes. As I frequently change rooms I often forget to plug in it's mains lead. There I am bashing away merrily when, with no warning at all, phut... it is dead as a dodo. And just to add insult to injury when power is restored the operating system is scrambled and I have to wait whilst a laborious re-boot takes place.
I put it to you that this is exactly what happens to your body and mine.
The power, in our case is, of course, Glucose.
In 1998, seven years after my Ivor Lewis, I was sitting with the Sunday paper after breakfast when both my wife and son nagged me to go and pick some apples. I gave in and off we went. The orchard was only an hundred yards away. After maybe a quarter of an hour bending and stretching I suddenly and with no presentiment at all, lost consciousness. A violent fit followed during which I crushed two vertebrae. [yes I had osteoporosis – but that's another (Vitamin D) story]
There followed total immobilisation in hospital for six weeks. Before discharge I had an extra three days in Endocrinology for fasting tests. “No sorry you're not diabetic ...off you go”.
Exactly one year later just when I had regained some mobility and again, after breakfast, my son wanted a lift. Having dropped him I parked and walked across the car park, only one hundred yards and into Homebase. I awoke three hours later in a bay in casualty. Funny, I seem to have done this before!
In discussion with the A & E Consultant the penny dropped. Standing up too soon had precipitated an avalanche emptying of the fairly high GI contents of the pseudo stomach. This had provoked the Duodenum into signalling the Pancreas for lots of Insulin. Thereafter my blood sugar had gone into a rapid decline. Had I remained seated the symptoms would have been confined to the familiar weakness, trembling, cold sweat, strobing vision, etc, BUT the physical exercise of walking had burnt up the last few remaining milligrams of Glucose; resulting in blackout and seizure.
Cause and effect – simples really.
Having gained this insight I have never had a recurrence. I now remain at table for my regulation 100 minutes and avoid leaving the house and any exertion until three hours is up. My family calls this my ruminating time!
Certainly this cramps ones style but it is vastly preferable to the alternative – in my case paralysis possibly death.
I admit to having been fairly reluctant to accept this and periodically in the ensuing 16 years I have retested the limits with different strategies: diarying combinations of foodstuffs, prepared in different ways, with and without varying liquids, timing, volumes, onsets, etc; a complete waste of time and effort, not least emotionally.
In practical fact it is rather like forecasting the British weather, just too many variables fluctuating and interacting chaotically to factor in, even with a super computer.
I am stuck with the bald reality for life.
A further proof is that there are no limits at all to what I can do provided I have not eaten or drunk anything. Fasting does not present any problems either, particularly since I do not experience the normal sensation of hunger. Equally, once the three hours have elapsed there are no limits to the amount of exercise that I can undertake.
If I was working and in an admin type job I could envisage commuting on an empty stomach and an understanding employer allowing one to eat at and remain at the desk. One thing that might undue that strategy is getting caught short. You haven't mentioned diarrhoea, is that a problem in these early days? This aspect is of particular importance in that it forces one to get up and walk prematurely; also in the context of loss of nutrients and disturbance to the fluid balance. Mine was another nightmare until I again got the measure of it.
It is great news that your syndrome is limited to the 'late' variety. The other type, 'early' is far trickier to contend with and an honest medic will admit that they haven't a clue despite there being umpteen theories put forward; however the research is at last gearing up.
I can't end this ramble without mentioning diet. None of us is able to process food with the same efficiency as before our surgery. This stems from the lack of mechanical action in the pseudo stomach, in the same location a concomitant reduction in acid and enzyme secretion, reduction in holding time, disturbance to gut motility with accelerated transit and disruption to gut flora brought about by pH changes, medications and so on.
As a result many of us have a struggle to regain and maintain a healthy BMI as well as contending with possibly silent deficiencies in several vitamins, notably D, B group and trace minerals.
I feel strongly that all of us, as a matter of course, should take a multi supplement; not the NHS minimum but one containing everything. Despite having a textbook ideal balanced diet of fruit, veg, pulses, nuts, wholegrains, oily fish, white meat and minimal dairy (excepting skimmed milk for Calcium) my bone density, lower leg circulation, condition of hair, nails and skin all improved dramatically when I switched to such a supplement – despite earlier lab tests purporting that I was within normal ranges albeit towards the bottom end. A thoroughly worthwhile investment at £7 per month.
I will be fascinated to hear how you get on at Tommy’s on 2 Oct.
I'm glad to hear that the pain is your only serious problem. I get the pain along with a long list of other problems. I have found that if my daughter uses her knuckles to massage the knots in my muscles. It hurts while being done, but in a good way, if you know what I mean. The pain goes away and this can last for up to 3 days.
I thought it prudent to give an update on my shoulder/rib pain. I was referred to a spinal consultant at London Bridge. He had some more CT scans done which showed two wedges out of my thoracic spine (probably caused by me collapsing) but these are NOT the cause of my pain. He could see no obvious damage that would cause this pain so referred me to a pain consultant. He has given me three epidurals into my spine. BINGO pain gone. Well it was gone for three weeks but slowly but sure,y it crept back again. Now I would say it is 50% better than previously and I can measure that in a 50% reduction of my industrial intake of pain killers. The plan now is to go with another set of epidurals into my spine in three weeks time.
I have tried t understand why the pain starts just under my left shoulder blade then works its way round to my left side rib cage when I walk. No walking and I have just a constant dull ache under my shoulder blade. But my two doggies disagree with the no walking scenario and so do I.
Other than this my Hypo's are a thing of the past now. The Acarbose tablets along with no obvious sugar and I have zero symptoms. I am too scared to try not taking the tablets ( I have been told that the hypo's do stop in some cases?)
Life is good and I am alive so should not moan. Before surgery I would have taken any of this. But it does really hurt and I do like to think that I will be rid of it.
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Had anyone had a tingling pain in left arm accompanying stomach / abdominal pain in the morning? 
Ear ringing , throat and headache, blocked nose, voice gone, intermittent cough, chest and upper back pain...awaiting endoscopy...pls help.
Bile reflux after oesophagectomy in 2004
Oesophagus pain, What Private Tests ?
Just found this site and feel more assured reading other people's experiences. 
