Oesophageal Patients Association
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Thank you

Thanks guys for all your valuable experience and information! ....I’ve said it before , but I don’t know how we’d get through this without the support and help on this forum ... it’s so reassuring.

Definitely going to try “Slim fast” for him as you suggested ...even though it does sound crazy ! and we had thought of diabetic meals that may contain less sugar ! It’s been a particularly bad day as the swallow is decreasing again and a day of “dumping “ but to his peril we know that the culprit was a tiny piece of Swiss roll !!! ....definitely NO MORE CAKE ! He can however enjoy two or three squares of plain chocolate with no palpitations and dumping!

I know you all have previously said but those that have suffered and still have the odd bout of “dumping” ... does your heart rate rise to about 150 prior then eventually subside after ? As it is this tell tale sign (his watch tells him , even though he obviously feels it ) that makes him feel dreadful , and if so will this gradually resolve or will this become his “norm” if he ate the foods that affect him ?

Debbie x

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Hi Debbie,

Can't give you any advice from our experiences because my husband hasn't had the op yet. However, if you look on Amazon there are lots of treats that are sugar free. Also, recipe books for baking sugar free cakes etc. I know that's not a lot of help when you go out for a meal, but it may be of some comfort at home. Not sure whether diabetic foods are entirely sugar free.

However, what puzzles me is how a sweet can be made entirely sugar free. Something must be added to create sweetness - carob gum, aspartame, fructose etc - all of which have their own "sugars", but not cane sugar. As I said, I am no expert and have no first-hand experience of this, but could it be that any form of sweetness is causing a rise in your husband's sugar levels - and thus a rise in insulin to cope? I would have thought that your surgery or hospital could refer you to a dietitian or nutritionist to give professional advice.

Wishing you all the best and a successful resolution,

Kate

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I avoid so called diabetic foods as I am a long term type 1 diabetic as well (the exception being diet soft drinks and chewing gum) - chocolate is for me but more than a minimal amount of milk is out again (the lactose intolerance finally came back though my daughter is 6.5 at this stage). I still get caught out with dumping occasionally, the foods that I can and cannot eat have varied so much over the almost 11 years since my total esophagectomy, the thing that catches me the most is if i am eating something I love and eat too much, it is hard to tell how much you can eat and it has increased so much.

The main thing is that I am here and that I am enjoying being a wife and mum :)

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Hi Debbie

I know you’re probably sick of hearing ‘it’s early days’ but it is extremely early days for Tony - I still consider myself in early days and that’s after 2 and a half years!

It’s very unlikely he’ll put on weight for awhile - he needs to get used to eating again first - I eat very well but yet still can’t put an ounce on - I just maintain my 7 stone and as my doctor says as long as I’m happy and healthy don’t worry - so I don’t worry.

It will be a long time before Tony finds his ‘new’ normal but he will - I had to start from scratch with eating as the chemo stole my taste buds and then the surgery left me with no appetite - I had to try really, really hard with food and made myself eat and get into a routine - there were many tears!

I dumped constantly for a whole year - anything that made me dump I left for a few weeks then tried again and so on until my body accepted it - I didn’t do diaries or anything as I wanted to get on with my life and not live like that - I can now eat pretty much anything but still struggle with certain things - just the other night I dumped out of the blue after my tea - something I’d eaten loads of times before - I’m not going to worry about, it’s just one of those things after the surgery and I know I’ll occasionally dump.

Even where I am now I would never consider eating out in the evening - but I’m hopeful that one day I will - the reason for this is I get very tense at the thought of ‘what might happen’ and the stress will make me sick - I also suffer bad abdominal pain after I eat my ‘bigger’ portions so I always go for a walk straight after as this eases the pain - so sitting in a restaurant isn’t for me - quite a difference from my ‘old’ life as my husband and I wined and dined a LOT! But that was another life.

I can manage a wee lunch stop for a bowl of soup or baked potato - Just yesterday I took my Mum and a few of her friends for afternoon tea for my mums birthday - I just sat and drank cups of tea, didn’t touch anything but took my normal snack with me which for that time was shortbread - I just enjoyed being out and socialising, it was a lovely afternoon. Did I miss tucking into the sandwiches and cake - no not really - food is fuel to me now - I need it to work with and ride my pony - so I eat.

I try make sure my husband gets out meeting friends every so often, so he gets out for a meal and socialising - important for you too!

One thing I’ve noticed is people that have had this brutal surgery all seem to live with different side effects so sometimes searching for answers isn’t the answer - just time and Tony figuring out his ‘new’ life is often the way to go.

I have a friend who’s a year further on than me from having the full Ivor Lewis - she eats out and goes on holidays - totally different from me but she suffers quite a few side effects that I don’t - she also had to have a few stretches at the beginning.

As for building up muscle - just get out walking whenever Tony feels like it - I got out every day without fail - walking our wee dog round the local golf course - I found I hadn’t actually lost much fitness.

All the best

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Try chewing gum immediately after eating. Not aesthetic to many or to many dining companions perhaps, but is has improved my digestion immensely. No dumping unless I eat something that's practically all sugar without anything else in my stomach. I'm 2 years past Ivor Lewis. Cheers. Worth

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Hi Debbie

I'm just reading your post and you've asked about 'dumping'; I had an oesophagectomy 2yrs3months ago & dumping still affects me. It feels like your heart is going to pound out of your chest, I sweat profusely to the point it runs down the sides of my face and my whole body tremors. My brain seems fuddled for a short while too (I'm nearly 60 so probably fuddled anyway!!) I have been a Coeliac for many years & my daily sweet treat for morning break are four tiny Greggs GF choc brownies. Strangely these can either slip down nicely.......or to my horror cause appalling dumping and this happened to me at work on Thursday (another story). One episode of Dumping for me lasts about 25 minutes. I also become very light sensitive. I live on my own so if I'm at home I go and lie down on my bed, relax & breathe it away. Afterwards I go incredibly cold & don't want to do anything else, just feel appalling.

I can only speak about my experiences but any food that for me, causes dumping, I avoid like the plague. GF porridge can have the same effect and I'll have to avoid Greggs on my way to work as well, can't trust the wonderful tiny brownies anymore.

Hope this info helps Debbie

xx

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"One thing I’ve noticed is people that have had this brutal surgery all seem to live with different side effects so sometimes searching for answers isn’t the answer - just time and Tony figuring out his ‘new’ life is often the way to go"

yes to that .

I know we're all different but hey we do share major similarities and I just can't figure out how there comes to be such a huge variation not only between individuals but within the individuals' reponses .

I think I've found that for me I can eat hard cheese with no ill effects . Everything else seems to be up for grabs !

I have realised that fatigue ,stress ,physical movement ,speed of consumption can all play their part in turning yesterday's innocous food into the cause of several hours in bed /on the toilet .

I'm currently trying to cut out gluten and these does seem to make a difference .I think I was on the wrong track assuming sugar was causing me problems .

But I don't want to paint a picture of severley limited intake - I have merrily carried on eating anything and sometimes being ill .It's really only now (4 1/2years on from op ) that I'm deciding I ought to try and control my side effects and not just put up with them .

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I do find the changing goal posts interesting, over time I can eat a lot more but the foods that I can and cannot eat have also varied over time, I hated broccoli until I could to eat it! I also eat some things that I know affect me but live with the dumping syndrome for them! One of my relatives has crohns and we have a lot of similar digestive issues.

We are still here, that is the main thing,

Aoife

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I haven't suffered a bout of dumping for some years (touch wood), but when I did I can certainly attest to the fact that my heart rate rose to over 100, I felt dizzy and started to sweat. It was like a hypoglycaemic attack. In fact, I once collapsed in a toilet after eating apple crumble!

Whether, in your husband's case, it will gradually resolve itself, I can't say. It did in my case, after around 4-5 years, but, as others have said, everyone is different in their reaction to the surgery.

Good luck.

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Hi I carry Dextrose sweets from chemist. When I get dumping it makes me lightheaded ,palpitations and bloated. 1 or 2 dextrose makes me feel better quicker.

Debbie

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Thank you all ,

I think as you all have said it’s a case of learning and being patient, as hard as that is for him ...it is trial and error and wait and see !

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Just want to say, be careful with 'sugar free' diet products that contain sorbitol or maltitol and one other that escapes me at the moment. Those are chemicals used in laxatives. We found this out the hard way. You do not need that on top of 'dumping.'

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Just a quick comment about heart rate during 'dumping'. The insulin spikes can be quite dangerous to the system when you get the extreme version. As well as the palpitations, it is possible to pass out, and some people have found themselves suddenly on the floor. So firstly do be careful about driving, or the risk of injury when falling; and secondly it is a good health thing to try and avoid these extreme reactions if you can ( I know that sounds stupid because nobody wants them anyway) because in the long term you can start to have issues with what they call insulin resistance. I mention this another aspect of the motivation to try and avoid them if at all possible. Some people do find a sugar:insulin meter useful but it might be a battle to get one on the NHS without a formal diagnosis of conventional diabetes.

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