Dumping

[John0118]

I had the Ivor Lewis operation to take out my Oesophagus due to stage 2 cancer Tumour about 8 weeks ago. They obviously stretched my stomach up to replace that. Recently I’ve been experiencing what they called ‘Dumping’. Can anyone give me advice on what foods cause it and how to combat the awful feeling of nausea, light headedness, cramps and diarrhoea. Also, how long do you take painkillers for. I’m on 8 Tramadol and 8 Paracetamol a day. If I miss any, the surgery incisions really hurt. The main scar on my back where they cut my chest muscles is the worst. Any advice on both would be grateful x

[Billings]

Hi john

Dumping will subside over time, but in my case never goes away completely. Sugar and dairy rich foods can cause dumping in the early stages but the stomach adapts over time and the occasions become much less frequent, although it defies logic as you can do the same thing two days in succession and have dumping one day and not the other. Oesophojectomy is a brutal operation (my GP's words) and recovery is a slow process. I was mixing concrete after 3 months but had to sit down every ten minutes ! Regarding pain management, everyone's pain threshold is different but I would try and get off tramadol as soon as possible, they can be very addictive and hard to come down from, suggest co-codamol may be a better option, but instead of paracetomol not as well as.

[John0118 in reply to Billings]

Awwww thank you so Much. It’s so annoying. As you say it’s so unpredictable. I guess I’ll have to just take it day by day. How do you deal with dumping? Water, rest, veg? Xx

[Iuypoi11 in reply to Billings]

I agree with billings, I'm three years out now. I avoid dumping by eating little and ofetehn. Rich dairy is a massive trigger, so is hidden lactose in confectionary. For example Cadbury now put a lot more lactose in their compound bars (e.g. Double deckers) because there is a glut of it in America (( now they all drink 'skinny ' coffees). Also salts and hidden salts ( like mono sodium glutamate) can startle off. Some things positively help to prevent dumping, the one that works really well for me is fresh pineapple, also sucking a peppermint sweet ( I use Trebor XXX extra strong) 10 minutes or so after eating I find is a big help. In the early days I kept a food diary and this proved a big help. I run a support group for oesophageal patients and while there are certainly common problems, the ways of mitigating those issues seem to be different.

The one thing we all find is that talking( and very often having a good laugh) about our various problems is a big help. If there's a group near you I'd recommend giving them a try.

[John0118 in reply to Iuypoi11]

Thank you so much. I’ll try that xx

[Janashlin in reply to Iuypoi11]

Hi, can you explain what ‘dumping’ actually is? Does it mean you end up running to the loo and ‘dumping’?

[John0118 in reply to Janashlin]

In my experience itsxwhen you eat too much or intake more sugar than you should. I’m my case it gives you stomach cramps, lightheaded, possible feinting, nauseous, blood pressure drop and a few times Diarrhoea. It doesn’t happen all the time but it’s not pretty xx Good luck x

[kiddy]

Hi John I had the full Ivor Lewis 2 1/2 years ago and still get dumping. My triggers are full fat yoguart, milk, over eating cheeses, Ice cream and too much sugar cakes, chocolate etc sometimes coffee. I avoid drinking apart from sips of water within 1/2 to 1hr of eating. Difficult if out socialising!!

I carry Dextrose tablets and banana with me if i feel it coming on i take 1 or 2 dextrose.

Also exercise can bring it on so i take a banana with me to eat straight after gym or walk. Sometimes you just need to sit down or cat nap to get over it.

I got off the tramadol as quickly as i could the pain does ease but also it reminds you not to do too much. Cold weather makes the scars ache. Also if i over eat the scar coming under my arm aches apparently nerve endings make it feel like my stomach is under my arm!!

I also am on creon which i believe helps with the dumping especially the diarrhoea.

Gentle exercise, build up your walking and you will feel better for it.

Good Luck

Debbie

[John0118 in reply to kiddy]

Awww thank you for replying. I’ll take notes from that. Yes I always drink with my meals. Just one of my habits. I’ll try not drinking. Just got back from a music conference in Amsterdam and got pretty depressed. I’ve been the party animal in the music industry for years. My title is Head of Mischeif. Not anymore. So sad. Anyway still breathing so that’s a bonus. As I’m only 8 weeks in, I think I’m expecting too much. I’m such a positive character I thought I’d got this. I’m being proved wrong. How long were you in the painkillers for? Xx

[kiddy in reply to John0118]

Very early days you have had a massive op on same scale as heart surgery! I came off tramadol 3 weeks after op had paracetamol. Also tried gabapentin as they cut through nerves and through ribs.

Remain positive it does get better. You will have a new norm of eating and drinking. Smaller portions 6 times a day eat by clock if like me you don’t feel hungry now but get hangry( low blood sugar ,low energy making you feel angry! Also pain might be worse if you overeat.

Good Luck

Debbie

[John0118 in reply to kiddy]

Thank you Debbie,

So good to talk to other people going through the same. My doc put me on gabapentin today

x

[kiddy in reply to John0118]

Hi worth trying. Yes it is a good forum to ask questions. It also makes you realise how far you have come, when others ask questions, in the early days of treatment. You learn you are not alone!! Especially as this cancer isn’t talked about like other cancers.

Good Luck

Debbie

[John0118 in reply to kiddy]

Again thank you. So good to talk to people who've been through it. I think I'm more annoyed with the eating and drinking. I'm known in the music industry as 'Head of Mischief'. After my trip to Amsterdam last week, that's certainly not the case. couldn't drink or eat much. Gutted. I am going to put a big cancer charity do soon with some of our artists like Dizzee Rascal and Robbie.. Anyway, thanks for all your thoughts. Means a lot

[kiddy in reply to John0118]

Hi i’m Sure your get back to Head of Mischief but don’t overdo it!! Great you have something good to focus on apart from your recovery.

All the Best

Debbie

[John0118 in reply to kiddy]

Thanks Debbie. I hope so x

[Tanktank]

John

I am 10 weeks post op and now having adjuvant chemo which has messed up my system. I have found horlicks useful. It is full of nutrients, adds fluid and doesn’t taste bitter which tea, coffee and chocolate do.

I was lucky to come off post op opiates (oromorph) etc at 4 weeks but have stayed on paracetamol during chemo because of headaches. I have never liked tramadol and would advise reducing if you can to avoid becoming addicted.

If in doubt speak to your GP.

Regards

Tanktank

[John0118]

Thank you. I’m still in quite a bit of pain after 4 weeks. I thinks it’s just where they cut my muscles on my right side. I’ve got this bad cough due to my Lung collapse. Really hurts to cough.

I hate Horlicks but will definitely try it.

Thanks for your help

[jeffw663]

Hi John

Just from reading your other replies I guess we have to live with 'dumping' to some extent, I'm now 3 and 1/2 months post op and manage to go 2-3 days without a dump, dairy, cream in any form, is now a no no for me but milk in moderation is OK.

I find a good breakfast is a help, this morning I made a potato and onion rosti, then had 1 slice of bacon and a fried egg on it, waited 1/2hr before drinking a cup of tea, then out for a cycle ride and stopped half way round for a cuppa and a small flapjack, then nothing till lunchtime.

I try to eat more protein than carb but as I love toast it is difficult.

Sorry I can't help re the pain killers I guess I was extremely lucky as I came off the pain killer in my spine after 7 days in hospital and then off the paracetamol when I got home, 11 days after the op.

So far I have not needed to start taking them again, I guess with the 'Key hole' op it is less aggressive on your muscles and skin.

Hope you get these sorted but I think the dumping is with most of us for years to come.

regards

Jeff

[John0118 in reply to jeffw663]

Thanks Jeff, yeah for some reason the pain has gotten worse over the last few days. Under my right arm round my chest. There is no way I can come off them yet which is a worry. So wired ad I had a fresh cream apple turnover yesterday and that didn’t seem to affect me. I want to go back to work next week but not sure I’m up to it. I have a much smaller breakfast than I used to. Scrambled egg, I bacon, one sausage and a few beans. They’ve taken away the 2 things I love in life. Eating and definitely drinking. I can barely drink a glass of Rosé. Used to be a bottle. lol. Thanks for your reply x

[Hon-Moonraker]

Can't really comment on the Ivor Lewis side of things as I had a standard Oesophagectomy so my scarring etc is different. Personally I haven't really needed painkillers since my jedg line was removed. I do get the occasional Dumping session, although I don't get the light-headedness. Like you I have tried to establish links with food and not really been able to. It could be wheat or cheese as pizza, cheese on toast and cheese & crackers seems to bring it on. It's either dumping or I've developed some sort of IBS since my surgery. I guess there's obvious similarities.

[John0118 in reply to Hon-Moonraker]

Thank you so much. Very helpful. Just readjusting my whole eating/drinking habits. Really frustrating

[David_K]

Im post Ivor Lewis just over 2 years. Dumping was a real problem, like every day to begin with, slowly down to 2 or 3 days, now maybe once a week. No rhyme or reason to it in that a slice of pizza one day is ok but the next day it brings on a dump and pretty much the same with all foods apart from porridge, eggs, cheese, baked beans, and toast (different to many other replies you have had which goes to show food that affects one is not necessarily an issue for another, so experiment and find out for yourself) - untoasted bread nearly always brings on a dump for me. But I have found two primary causes of dumping are, eating too fast and eating to large a portion, so little little and chew it damn well. Pain has gone away and then flared up, particularly right side of chest and right shoulder blade, again not consistent, just flairs up and have no idea why. By the way, I have no issues drinking with food or drinking anyway, beer was a bit gassy but not an issue any more, and I always have several glasses of wine with my evening meal (snack really) and a few more after. Enjoy what you can as you can and exercise such as lots of walking really helps.

[John0118 in reply to David_K]

Awww that’s fantastic help mate. Yes I’m in the music industry which is known for its drinking. At the moment I can’t do more than two glasses. I hope that improves. My pain is increasing not the other wY round. Off to the quake tomorrow to see if I can have another painkiller cocktail x Thanks again

[Suelue]

Thanks for bringing this issue up. My son is nearly 3 years post IL op and suffers such a lot with dumping. The different ways of coping will be help him I’m sure. I don’t know if this is on the same thread but I would say to try and get off any opioid meds as soon as possible as my son became addicted. I’m baffled as to why his GP didn’t notice how much he was prescribing and try to help him reduce them. I’m going to suggest keeping a food diary as a start.

[Debbiewallis]

Hi John ! My husband Tony is now 15 months post IL following T3 M0N0 and has had “ dumping” ever since . Admittedly it is lessening but it is also due to learning what causes it and to try and avoid them !

Coffee is now a no no as is anything with jams or overly sweet. One of the main causes though is having just “ one” mouthful too much and it’s like disaster ! All the nutrients and calories he might have taken in are lost and in a flick of a switch he becomes pale ,clammy, tachycardic, stomach pains dizzy and ends up in the loo for goodness know how long , resulting in it wiping him out to a deep sleep.

We know the signs now and also make sure he really does eat little and often....every couple of hours which really helps ! And ALWAYS carry dextrose tablets with us in emergencies or something similar to pick him up again. It’s very much like a diabetic having a hypoglycaemic attack, just one of the side affects he now has to live with unfortunately, but you like him may find as with others that the symptoms lessen over time.

We did find that in the early days most things seem to give him dumping syndrome so we’ve already found that things are getting better with that !

Good luck and keep positive!

Debbie