Hypo like symptoms after my oesophagectomy / partial gastrectomy

Pre Op Chemo - Oct 2012 - Dec 2012

Op - Jan 2013

Post Op Chemo - March 2013 - May 2013

I am suffering from hypo like symptoms, hot flushes, racing heart, shaking, dizziness, feinting, cold sweats, loss of concentration which, although I know can happen, is very scary for me.

I'm currently trying to work out what triggers them but I wanted to know if anyone had any advice for what to do during one - i.e. does it indicate that I need sugar? Do I need slow release carbs? Do I just need to ride them out? Am I now basically considered a type 2 diabetic and should follow any advice given to them?

I've just called to ask my hospital nutrition department and they said they can't give advice over the phone and I have to get an appointment and while I've generally got no complaints regarding the NHS you know how it'll be, I'll wait a few weeks for the appointment letter and the appointment will probably be in the next 3 - 6 months but I'm getting these quite often and, like I said above, they scare me!!

43 Replies

  • Hi there. All sounds very familiar.... usually some time - 30 minutes to an hour - after eating. For me a quick glass of Coca Cola usually does the trick (full strength, not diet).

    I carry Glucose Tablets when out and about, they also work. Welcome to the 'dumping' club!!

  • So sugar is generally the answer then? Thanks for that, I'll try some glucose tablets and see if they work.

  • hi, I just thought that dumping was the norm, sometimes very heavy sometimes uncomfortable, but part of the side effects.............I will try Coca Cola/Glucose........see how it works.

    This is what makes these forums so valuable to us all

  • hi, I just thought that dumping was the norm, sometimes very heavy sometimes uncomfortable, but part of the side effects.............I will try Coca Cola/Glucose........see how it works.

    This is what makes these forums so valuable to us all

  • Hi Spanner16. Do try the Coca Cola (or similar) - works for me like magic - within seconds!

  • Hi Spanner

    I am now 6 and a half years post op and I have had exactly the same symptoms as you for most of that time. It's not as bad now as it used to be but as far as I'm concerned its Dumping Syndrome. the thing I find is the best for a quick fix is a slug of syrup from one of the squeezy type syrup bottles you can buy. Works for me anyway.

    best of luck


  • Wow - that sounds both awesome and disgusting! Thanks for the help though, sounds like its just something I'm going to have to get used to, the main thing is being able to deal with it when it starts because like I said its pretty scary!!

  • Hmm, does sugar help you even when having early dumping?? I need sugar when I get late dumping (blood sugar goes very low), but if I add sugar when having early dumping, it seems to get even worse!

  • Isn't early dumping when food rushes through your system too fast? I was told it's important to have a good amount of protein in every meal which will bind with the other types of food and slow it down because your body takes longer to process protein. I don't know if that will help you or not?!

  • I am five years post op and I sometimes get what you have described...it's horrible, got it when I was driving after having a meal. Pulled into a garage ( lucky there was one handy) drank a bottle of coke and had chocolate, I am not diabetic, but it worked. I asked my doctor but no one knows what causes it

  • Thanks a lot for that - I bought some jelly sweets that I now have in a little tub in my handbag for when it happens again, hopefully chewing a few of them will help. I'm not a fan of fizzy drinks but it looks like I might need to try keeping some coke in the house for when it gets bad again.

    As long as I can deal with it when it comes on then I'm going to be fine but I just didn't know what to do before and didn't want to do anything to make it worse!!

    It's also nice to see so many people so many years post op - I hope all is well with you and I hope I can one day say that I'm five years post op too!!

  • It can be frightening especially when you are coping with all the other changes to your body,

    I used to carry sweets around in my pocket for when I was out or have a milky coffee. It is usually caused by the insulin being over secreted and nothing left in the stomach to absorb it. The pancreas that secretes insulin has to adapt to this new life style and it takes time.

    I find it comes , it goes, I know that it will right itself. It does get better with time. It is early days yet for you and your body is probably still trying to adjust.

    So the best of luck with it and one day you might be like me 19 years later, trying to remember what it was like when it all started


  • Thanks for that Sally - a milky coffee won't work for me at the moment because my body doesn't deal with dairy at the moment - I've heard that that comes back over time? I've since discovered almond milk which is a god send because when I'm at home and work it means I can eat my beloved porridge once again without being sick!! But sadly, unlike in the US (I have lots of friends over there) coffee shops in the UK don't sell almond milk and don't even try and sell me a soy milk coffee!! Bleurgh!! lol

    I'm glad it gets better over time, to be honest I really can't complain things are already 100 times better than they were even a few months ago.

    Wow 19 years!! I'd take that gladly! I'm glad things are working out for you after what is a horrid situation.

  • Yes it is the classic dumping syndrome.cant add anymore as loads of good advice already given

  • Firstly I do not hear people replying that they do blood sugar tests. Your GP should recommend one for you to watch your sugar levels. don't eat large meals but lots of small ones. I have learnt the hard way by having levels as low as 1.1 where it becomes impossible, nearly to the extent I look my black jelly beans and jar of honey and have no idea what to do with them. Good luck and don't get despondent you can learn to live with this and always remember that there are many that have worse problems.

    I find the jar of Honey the best way back up with just a couple of spoonsful will do the trick.

  • So would / should my GP prescribe me with a blood sugar monitor? I wasn't sure what the GP would give because I wasn't sure if not 'technically' having diabetes would mean they wouldn't give me one.

  • Hi

    I am 3 years post treatment and still get dumping but it is easy enough to deal with, just have to learn to recognise the symptoms and what actions to take, its a bit trial and error to begin with but practice makes perfect. I keep dextrose sugar tablets in my handbag, they help lots and it is easier to eat them discretely in meetings. Good luck


  • I find it so upsetting to read posts like spanner's and to be reminded of the huge differences in care and support .

    The hospital I attend - St Thomas's - has a specialist nurse and a dietitian who always return calls and will give advice over the phone .They will refer to other professionals in the team and arrange an appointment that week or the next if they think it's necessary .I'm really appalled by your treatment spanner .And feel so grateful for the care I receive .

    I've had both early and late dumping ,the late dumping in particular is very scary and I feel for you spanner and others who've been struggling with this .Sugar certainly will sort out late dumping .Apparently milk or chocolate ,because of their fat content are less fast in bringing relief .

    The OPA opa.org.uk/

    have some really good articles on dumping in the library section of their website .I think there is a fairly clear consensus on what causes it .

    opa.org.uk/regional-shop/lo... .

    What caused my late dumping was me very stupidly thinking I could drink one of those awful Fortijuices ( which have a very high glucose content ) because I'd been unable to eat lunch . If I'd drunk it over a few hours and /or had it with some complex carbs or a banana or something I think I might have avoided it .

    Oh and although the symptoms ( jerking ,tunnel vision ,cold sweats etc ) were quickly relieved with 2 biscuits ,when i got home I felt starving .Having had nil appetite since the op in August I proceeded to eat 2 more biscuits and 2 slices of cold meat .And then had cramps and diarrhea for many hours . So if you get hungry afterwards ,beware .

    It's so tricky all this isn't it ? Can feel such an impossible puzzle to unpick .

  • Yeah I know - its all about small steps really, I just try and concentrate on dealing with one thing at a time and then once I've dealt with that I move on to the next thing!! Lol, it's all a bit of an 'adventure' really.

    I have no appetite at all since my operation which I've been told might come back but might not and after feeling woozy and wondering why and then realising I'd 'forgotten' to eat for nearly three days I've now put alarms on my phone at regular intervals during the day and when it goes off I either eat or drink depending on what it tells me to do. Its taken away my enjoyment of food but it keeps me strong and able to carry on with life so I'll take that!!

  • I think regarding yourself as a diabetic might be quite helpful. It is the body being tricked into releasing a big insulin spike that probably creates your symptoms. The quick dose of sugary stuff redresses the balance. The sugar / sweet things solve the problem in the immediate aftermath, but trying to balance your intake a bit better in the first place is a diet thing. Trying to avoid eating things which have a high glycemic index / load will tend to even out the highs and lows of the sugar:insulin imbalance. It is almost as if the solutions for, say, being a diabetic or having IBS work for people suffering from dumping syndrome, but for different reasons.

    I know this is easier said than done, but try to make sure that any dietary advice from the nutritionist is from a specialist dietician (there is an Upper GI section in their dietetics manual). The generalist advice about eating lots of creamy and sweet things to try and regain weight can sometimes cause more problems than solutions.

    Some people do use a sugar:insulin test kit and report wildly varying levels - as if they were unstable diabetics.

    Lactose intolerance is relatively unusual but there is sugar content in milk; either way, staying off dairy products can sometimes be helpful as at least that shows whether it makes a difference or not.

    Some people find they become really interested in the contents labellling for foods, and i can understand why this would be so.

    And this little and often principle is important.

    Appetite and taste buds do sometimes get wrecked. Keeping your mouth clean and moist might help your saliva system to recover. The taste buds do often recover in a mysterious process that I have never heard anybody explain or understand!

  • Thanks for that - I've been trying to eat low GI foods and basically a healthy balance of foods including healthy proteins and vegetables and to be honest I have no idea why my dumping occurs. I've been writing a food diary since my operation and still can't seem to find a pattern which, for an engineer who believes that there should be an answer / solution for everything, is frustrating at times. For example, the other night for dinner I had half a small steak and a couple of bits of broccoli and I was completely fine so I had the other half of steak and broccoli the next night for dinner and about two hours later I was sweating profusely, shaking like a leaf, my heart felt like it was going to leave my chest and I barely knew where I was or what I was doing!! It's probably worth it to note that during the day for breakfast, lunch and snacks I'd eaten the same thing so it wasn't even as if something I'd had earlier might have affected it!! Confusing!!

  • I checked out your experience with a specialist dietician who says it is unusual to have identical food intakes with different results, but she did say that the human body is amazing in its ability to be different from a machine! All things being equal, the same intake ought to produce the same amount of insulin, so she would then start to ask you about portions, timings or activities that might have been different in some way? And perhaps a sugar:insulin meter would have shown how different the reading was from one day to the next? Definitely confusing!

  • Thanks for that - its very strange and sometimes frustrating when I find something I think works one day and then the next day I get a reaction to it but things have definitely calmed down over the past few months and I'm now very good at logging my food I just need to maybe spend a bit of time analysing my food diaries to see if there's a pattern hiding somewhere!! I now have a blood glucose monitor and I'm booked in for regular check ups with the diabetic nurse, they are treating me as a type 1 diabetic who doesn't need to inject insulin. My nurse is lovely and a great help so I've now got lots of good advice - note to others, 4 jelly babies should stop a hypo (that seems to be the "prescribed" dosage!! Lol)

  • Oh spanner ,I so relate to the wanting to understand why things happen and being able to figure out a plan of campaign . I spend hours analysing what I've done and trying to relate it to my symptoms .

    Feeling powerless and having so little/no control over this condition is one of the worst aspects as far as I'm concerned .

    Your recent experience of being fine and then not fine at all when you've changed nothing is so dispiriting .

    Bananas ,butternut squash and pasta ( not all together ! ) are my latest effort to get on top of this .

    Guess it's early days for both of us - my op was in Aug . Dreading post op chemo if I can't improve ,how was yours ?

  • Well all I can say is I've been there - there were days when I was suffering so much with symptoms that I thought 'If this is living, I don't want to do it!!' but it does get A LOT better believe me. I had a lot of trouble with cramps in the beginning and that's basically gone now, I only really get those when I push things and try and eat more than I KNOW I should so it's my own fault really and I'm learning not to be so silly! I'm back at work and back at the gym and living and enjoying life once again so it does get better.

    I can only say for my experiences of post op chemo but I'll admit it was very tough, a lot tougher than pre op (I continued to go to work in between cycles pre op) but I found it really helpful to keep a diary of how I was feeling, for example I knew that around day 10 after my IV drugs the clouds started lifting and I started feeling a bit better in myself and that was something I could hold on to during later cycles. Also allow yourself to rest / sleep whenever you need it - it's nine weeks out of your life (if you're like me and having ECX chemo), other things can wait and you'll be up and about in no time, I started back at work part time only a week after finishing the tablets of my last chemo cycle.

    Also don't be afraid to ask for help if you need it, if the anti sickness drugs aren't working don't wait, tell someone straight away, they have hundreds of different types and will find something that works, don't suffer in silence.

    There is a light at the end of the tunnel - nine weeks is nothing when looking at the grand scheme of things. You'll be fine but if you want someone to talk to then I'm always here.

  • Thanks Spanner .Yes ,was definitely wondering if it was worth it these last two days ...

    Yes I'll be on ECX .It's interesting that you refer to "between cycles " as my pre op stuff was just 9 straight weeks .Once I'd finished day 21 I was back on day 1 and the infusion .It did seem a bit strange as people kept saying "during your break .." ,but there wasn't one .

    It's good to hear you're getting on ok ,logically I know things will improve ,but when you're feeling rough it can be hard to derive much comfort from a rather vague prediction -) .

  • Yeah sorry, it was the same for me but I generally referred to when I was taking the tablets as 'my break' between cycles because for me, apart from bad skin the tablets were the thing that affected me the least - it was the two IV drugs given overnight on day one that floored me!!

    Honestly, life is good for me - if you handled the pre op chemo then I'd say definitely go for the post op stuff. Like I said before it's nine weeks and then it's over and you've given yourself the best chance possible. When you're in the middle of it it feels like it's never going to end but now I look back on it and it flew by! It only seems like yesterday it was January and I was going in for my op!!

    Good luck with everything - you'll be great, let those little cancer fighting drugs do their job and the next thing you know it'll be finished.

  • Hi violet, I'm on my third cycle of post-op ECX chemo and agree with spanner that the first 7 days after infusion are not great, nausea, retching, extreme fatigue, but then it clears gradually as you carry on taking the Capecitibine pills.

    I too suffer from occasional dumping syndrome, and there's not always an explanation, but I find that the symptoms subside after about an hour. Symptoms are severe tummy pains/cramps, sweating, palpitations.

    I too have no appetite and no pleasure in eating or drinking, but you just have to do it to get well.

    Strangely I find strong tastes like licorice or Werthers toffees help combat the nausea.

  • Yeah I used to have quite a sweet tooth (chocolate etc) but since the operation I can't get enough of very sour things and even the smell of chocolate makes me feel a bit queezy!! Strange huh!!

  • Hi, welcome to the club, I had my op 2 years ago and have suffered with dumping, on 2 occasions I ended up being taken to hosp by ambulance after collapsing while out! Glucose tabs do help, if I eat too much my heart races nine to the dozen! Its all a learning curve, it helps to know there are people out there going through the same thing. Take care :)

  • Yeah it definitely helps to know you're not alone - the advice given here has been amazing and I know now what to do when the next one comes on which in turn will make me panic less.

  • The first hypo episode I had was a year ago, and quite terrifying, as neither I nor the French A&E where I wound up in the early hours had any idea what it was. Soaked with sweat, rolling eyes, completely incoherent for 20 minutes, didn't recognise my wife, didn't know my name or d.o.b., and feeling of absolute dread. OPA (not the medics) told me what it was and how to deal with it: take plenty of fluid, and eat biscuits or chocolate. It has ceased to a problem. Had the start of one yesterday - drank half a litre of Ribena I keep in the car, biscuits and Maltesers - and in five-ten minutes it was gone without having developed. I really feel for you - because they are most unpleasant - but you will be able to cope with them (and pretty easily) if you follow the v sound advice others have given you here.

  • I agree - thanks for that. It makes me feel a lot better to know that this is 'normal' (for us 'special people' anyway)!!

  • I am 22 years post Op and still experience this regularly.It doesn't get any better,you simply become more skilful at avoiding it.

    All the above is good advice however the key function is movement .If you sit completely still after eating -in my case for two hours -then you should avoid the premature discharge of the contents of the pseudo-esophagus down into the duodenum which in turn causes the sensors there to signal for extra insulin to deal with the sudden surge in sucrose.

    The tendency to premature discharge is determined by the physics of your new plumbing---how much 'pull-up' has there been , does the pyloric sphincter have abnormal function etc ?

    The normal pyloric sphincter passes 1 per cent of the stomach contents at 1 minute intervals so,notionally it takes one hour and forty minutes for the stomach to empty---do you remember what your Mother said about going swimming after lunch ?

    The symptoms felt are due to sequestration of blood sugar by the hormone insulin.

    Contrary to some medicos advice disturbance to the fluid/electrolyte balance is a factor only as regards diarrhoea .

    You are NOT a diabetic and metering will not achieve anything .

    I now know that 6 Worthers Originals will completely reverse the symptoms but I am still left feeling as if I have been kicked by a mule for several hours afterwards.

    A crucial aspect is learning to recognize the tiny signs which precede an attack and then taking sugar immediately.

    Most important of all cease any kind of activity ,even walking, which could further deplete blood sugar.There is always the possibility of going on into a Grand Mal type of seizure and unconsciousness.This has happened to me twice with the consequence of fractures and lengthy hospitalization.

    It's worth bearing in mind that being in control of a vehicle in these circumstances is a offence !

    Notwithstanding , as the song says, "je ne regrette rien "

  • I must disagree with you, Gutlesswonder, on the subject of using a blood glucose metre. I find it a great help. If I take sugar when I first feel ill, it makes it worse. If I lie down and use the metre, I can tell exactly when to have a sweet drink.

    But I agree completely about feeling as if I've been kicked by a mule.!

  • Very interesting and I stand corrected.Just goes to show the extraordinary variations that we each have to contend with.

  • Can I ask (if you don't mind answering) if you're 22 years post op how old were you when you were diagnosed - I'm 27 you see and haven't found anyone my age who has been diagnosed and am finding it hard when they say 'well usually this is what happens... but you're so different from the norm we really don't know with you!!'

  • I was talking to a retired surgeon the other day and he said that he could only remember dealing with about four people under 40! The statistics are less than 1%, but I know of about four women under 40 in and around London who have had the disease. And I do think that the age profile is getting younger but I have not seen statistics to prove it. So statistically it is about males over 55 years, with some variations between adenocarcinoma and squamous cell carcinoma, but the medical profession do need to be aware of the younger age group like yourself. There are some people who were initially turned down for an endoscopy initially simply on the grounds that they were too young to have this disease.

    I also saw a slide last week which dealt with various genetic signatures of tumours (and some of them change after chemotherapy) and there is one such genetic element, related to ageing, that runs across a good many cancers. It is very early days, and the beginning of the idea that treatments might in the future be tailored to an individual's genetic make-up, but the person I was talking to wondered whether there might just be something different in the DNA signature of a younger person's cancer than an older person's? I do not think anybody knows, and it is one of those things that might be resolved by research in the future.

    If you would like contact details for other young women affected, send me a message.

  • Yeah - I'm still very thankful that my doctor sent me for an endoscopy when she did! I've since been told that with regards to my age, sex, lifestyle (keeping fit, eat well, don't drink, don't smoke - yup I'm THAT boring!! lol) if she had sent me home with some antacids then no one would have thought anything of it. I'm still waiting for my first CT scan after op and treatment but I do know that finding when they did has given me the best chance possible.

    My surgeon's assistant told me the same thing regarding genetics - that basically between the ages of about 25 to 45 you 'should' be fit and well and that if you get cancer between those ages they think it could be a genetic defect where the body has more of a propensity to produce mutant cancerous cells, lol I always knew I was 'different' I just didn't really want to be different in this way!! I personally would be more than happy to be included in that kind of research (I've not been asked and I'm not even sure if that kind of research is going on yet) if not to help me but to help others in the future.

  • I'm now three and a half years post op. but in the early days before I knew about dumping, I went shopping and had lunch in a small cafe in a big store in Carlisle. Of course, I dumped. felt dreadful, and ended up lying on a bed that was for sale in the store, watched by all the other customers. But I felt too ill to be embarrassed.

  • Hi Spanner

    I am confused about when this new website reveals individual replies in the public forum ! (Alan ?--help )

    Do you mind if I reply 'in public' since it may be of interest to others ?

  • Of course not, reply ahead!!

  • It all goes on to the public website, unless you use the private message facility (click on the person's name and follow the cues; or go to Members and find the person in the directory and click on their name to see the 'Send a message' box. It does indeed take a bit of getting used to!

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