A quick question. I am 17 years post oesophagectomy. Today I experienced a whole new level of symptoms that I am confident were part of late dumping syndrome. 1.5 hrs after cake I had an episode of sweating and a new experience of confusion and disorientation. My partner was shoving dextrose tablets into me and it took about thirty minutes to resolve. I have never had confusion before. Just curious if others have developed this after so long. I am confident it was due to dumping as I have been totally wiped out all day and this is pretty normal after my dumping experiences. I should add that I have been on meds to encourage gastric emptying but I have been on those for about 8 months. Clearly, i will discuss with my consultant when I next see them, but curious on the frequency of this. The confusion is enough to put me off cake forever. Thanks for listening. Folks.
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SurreyGuy
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Hi I can symphasize with you ,I am 15yrs post lL and also suffer occasionally from late dumping. You describe the same feelings that I get, although I seem to know when it's about to happen,my cure I found as I have tried glucose and all the other recommended products . When I feel it coming on I keep a stash of 40g bars of kendal mint cake, I have found that taking one bar and it clears me up in about 10min.hope this helps.
I usually get 15 minutes notice as my perception of light changes and my vision starts to blur. But I didn’t act quick enough today and I ended up with the mother of a an attack. Never ever had confusion…it was really bad too. I had no idea where I was. Mint cake is a great idea. I will try that one, thanks. I have, as usual eaten all day now! I get a hunger and a thirst that just can’t be satisfied after an attack.
Hi yes I can go a time without late dumping then out of the blue it hits you hard. I have nearly passed out and thrown up on occasions . Not a pleasant experience I rely on dextrose and a banana.
This late dumping sounds like hypoglycemia. I eat tablets - Acarbose everyday to help me with this. If I forget to eat my meds then my blood sugar goes very low and I suffer confusion and dizzy spells. Sometimes this also happens after late dumping after the stomach cramps and diahorrea.
I did get a blood sugar machine which confirmed the low blood sugar readings and then got tested by the hospital to confirm why my sugar levels were dipping - due to the fluctuations in insulin levels in my blood.
Hi there, thank you. Yes, I agree, it is due to low blood sugar. It is just the symptoms were so severe. I am vary familiar with my dumping, it is usually palpitations, sweating and tiredness. After so many years I thought that was how it was going to always present. I now know that is not the case. Thanks.
I am nearly 4 years post op and I have been suffering from early and late dumping as well as the hypoglycemia.
I have been told that I will be on Acarbose for the rest of my life. As I say I do forget to eat my morning meds and when my sugar levels dip, I remember that I have missed them.
I believe I have been given a new lease of life with a new set of plumbing so I just get on with it as best as I can especially with the various different problems I encounter all the time.
Hi - I've never experienced confusion and disorientation before, either, but do know that they are commonly associated with severe hypoglycaemia, so what you describe all accords with a severe episode of late dumping. Why you should suddenly have such a severe attack now, after so much time, I don't know, but I've found that all sorts of random factors seem to play a role - not just the quantity of the sugar. For what it's worth, I've found that it helps to drink something sweet (my go-to is Sprite, just because I have it in the house, but fruit juice would probably be better). I seem to need the hydration as much as the sugar.
Hi, thanks. I find I start to crave fluids just seconds before the palpitations start and my go to drink is Coca Cola…of course it has to be the full sugar version. Then the thirst and hunger starts. Today I am back to normal except I ate so much rubbish yesterday (crisps and more crisps) that I have put 3 pounds in weight on and have a full chest of food! Hey ho.
I’ve experienced this. First sign is light headedness. I then check my pulse if elevated I know it’s time to act. I find 4-6 good sized sips of soft drink (the kind with sugar) kicks in after 10 min. I even keep a small bottle in my car in case it happens when driving. Catching it early is key.
I am 9 yrs post op and suffer with late dumping, I get like yourself all the time, at first it was frightening now I just think, here we go again, I get the blurred vision and feeling of not being here , first off, then palpitations, sweating, dizziness etc. I eat a bar of something sweet if to hand, if I’m out I take dextrose with me, I get really thirsty too, mine lasts between 20 minutes to an hour. I have spoken to the docs about it but they seem to just brush it off. Can someone tell me what Acarbose is please and how you get it ?
I have been doing great all things considered but within the last month I have stopped absorbing my food again even with taking Creon with every meal and taking Loperamide, I am suffering with chronic diarrhoea, I had an endoscopy which showed all was good, also had a CT scan, all good, but I now panic because of bowel or pancreatic cancer. People seem to think that because we have this op and survive all is good, they don’t realise the daily obstacles we face.
I hope you are reassured with all the responses you have,
Hello, thank you. I was really just sharing my experience and was curious as I thought I really understood how I respond. After 17 years I know exactly what pushes me too far…or so I thought I did. But, I also think as we get older our bodies change on the inside too, so things are not as they used to be 17 years ago. At least that’s how I have made sense of the satiety that started 3 years ago (out of the blue) and I guess I need to remain prepared for the unexpected. You are right in that our altered anatomy makes it so much harder to spot the warning signs of other disorders. But, 17 years ago just after the operation, the dietician warned me that I was now in the “take every day as it comes zone” and not to worry about any other health issue as every day from that point was a bonus. To some extent it was great advice…until I get a new symptom! Thanks.
hi i was on Creon for a year post surgery and had diarrhoea for one year, it was so bad i was occasionally incontinent. the dietician thought it was malabsorbtion and just upped the Creon dose. i decided to stop the CREON as it says in the literature it causes diarrhoea. I slowly reduced it and kept a bowel chart and the diarrhea stopped. i occasionally get it with Dumping though. i would discuss this with your Dr/dietician. good luck.
Hi, thank you for that! I shall certainly have a word with them. I am having to take loperamide daily now, which is something I havnt done in a long time. Its the pain I get after eating that causes a problem too, I think this is why their saying to up the creon. I am ringing them this week to talk things through so shall update on progress.June
Hi, sounds like me when my sugar drops after it crashes. I am on meds now to flatten out my sugar dropping too quickly after it goes up from too much sugar or simple carbs.
Ony 3 & half years post-op but can relate to the above. I have experienced similar symptoms, but perhaps not so severe. Some sweats, a little dizzines & blurring of vision are a warning for me to head for a glucose fix (grapes I also find are good). I would suspect that altering your gastric emptying could well be significant even though you've been on the meds for a few months. Unpredictablity I think is a combination of many factors including diet & activity the preceding days affecting metabolic factors & perhaps glycogen stores. I also find refined carbohydtes can trigger, so not only the sweet cakes but also pastry & now tend to avoid pies or eat less. No doubt the ageing process has an influence & doesn't help. Hope I can also look forward to reaching a 17 year milestone.
Best wishes & good luck with managing these symptoms.
hi i get ?Dumping/?hypo attacks where i go weak/exhausted/breathless/fast pulse/upper stomach cramps/nausea/loose stools, all in that order. They ofter occur when im ready to eat. Drinking a small can coke seems to interrupt and shorten this cycle. Advice from a member here, so thank you.
hi Surry Guy, I’m 3 years post eosophagectomy and get episodes of ‘reactive hypoglycemia’ - flashing lights, confusion, no spatial awareness, sweating, viracious hunger and thirst and then total exhaustion. This happens about an hour and a half after eating - bread/sandwiches/ cake/pastry seem to be the worst culprits and the afternoon is the key time.
Some episodes are a lot worse than others. I had a blood glucose monitor for months (I had to pay £50 per month) LibreFreestyle which set off an alarm every time my blood sugar dipped. It helped me recognise the symptoms - pins and needles to start with and usually a few jelly babies does the trick. I stopped the Libre freestyle as it was expensive and kept going off all the time!
I did see a gastroenterologist about foods to keep my blood sugar steady but lentils, beans, quinoa are not very digestible when you have no stomach!
I’m now keeping a journal of what I eat etc and the hypos so that I can see a dietician.
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Dumping
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