nausea and sugar dips

[PopandMo]

Hi, I’m 2 years post Ivor Lewis this month and I still tend to have sugar dips in the afternoon-not full dumping syndrome, but I guess a milder version. Often I feel very nauseous with it, as I do after eating. I’m struggling just to maintain my weight, which is pretty low, despite regular eating and still having a most of a bottle of Fresubin daily 🤢Is this common? I’d rather not take cyclizine as it doesn’t really help, but wonder what I’m doing wrong. Any advice? Thank you!

[liz_crisp]

Hi Popandmo,

That's fairly normal, it took me 6 years before I really put on weight and kept it on. I still get sugar dips and full blown dumping 14 years on but it gets to be something you manage. There are lots of ways to add calories to food without increasing the volume, like using butter and cream to cook with adding cheese to meals. Enjoying cakes and biscuits. The OPA website had some good recipe ideas and look at the NHS advice for older people there are some good tips there for small calorie laden meals

Feeling sick often comes with having eaten too much in one go, but might be an idea to check it out as you may need a stretch of food is hanging around in the system.

Good luck lizzy

[PopandMo in reply to liz_crisp]

Hi Lizzy, thank you for your advice. I guess it’s qquite early days in the grand scheme of things for me. I had terrible trouble with food sticking in the early months, but they said I didnt need a stretch as the endoscope was moving down freely. That’s resolved now but the nausea persists As you say maybe I’m forcing down a bit too much food. Thanks again!

[liz_crisp in reply to PopandMo]

You are right it is early days, and it does take quite a bit of getting used to the new plumbing, also as time goes on it changes as it settles itself in. If I have a problem I tend to cut down on portion sizes and up the calories for a while (including eating chocolate etc ) till it balances itself again. If you are managing to maintain you are doing well

[PopandMo]

I was very slim anyway, which didn’t give me a lot to come and go with, so I guess maintaining that isn’t too bad! I was always a very healthy eater but I find I can’t cope with too many vegetables etc. and I think pretty much any food is good food in this “ new life”. ☺️

[Molly14]

Hi - I’m 8yrs post Ivor Lewis and I can’t put on weight and only weigh 7.2stone - I find it a battle to maintain it - however I look healthy enough and I’m very active which is part the problem - I spent a long time worrying about weight but don’t now. I also suffer from constant nausea and zero appetite - I eat to survive and I’ve had to work hard mentally on that one - I used to take loads of nausea tablets but none worked and I find being outside the best medicine - as for sugar dips I always carry mini mars bars in my pocket - I eat lots of sugary snacks through the day - things change so much over the years - hopefully things change for you - it’s a very, very long journey - all the best

[PopandMo in reply to Molly14]

Hi Molly , thanks for your reply-I weigh the same as you , and likewise I’m also very active. I teach taekwondo which probably doesn’t help! I have had to curtail that a bit to be honest, I just don’t have the energy any more. I have been struggling hugely mentally speaking since my diagnosis and find walking is the best medicine for that. Fantastic to hear you’ve reached 8 years! Hopefully things will improve for me.. it’s certainly a learning curve. X

[grandylynda]

6 years on I still have problems occasionally, don't think it's unusual. I didn't put on weight until I was put on creon. I am now on these and am better all round as well as having got weight up to 8st. Ask about these, it is a fairly new thing for oesophageal cancer patients.

[PopandMo]

thank you for that suggestion-what exactly is Creon? Well I guess I’ll go and Google it! Things certainly do seem to take a long time to settle. I just try to feel grateful for every day I have. ☺️

[Popsic in reply to PopandMo]

Hi PopandmoI am 10 nearly 11yrs post op. I still get dumping , still get pain in my midriff area, I have been on Creon for about 9yrs, if I don't take it with my food, it doesn't stay in very long!, I have put on weight, about 2 stone. It's a long journey and everyday is a learning day. Worth asking about the Creon, it slows the food down so you have time to absorb some of it.

I am still under the care of " the team " , they have had a hard time sorting me out. I am also still on omeprazole 40mg at night, which is very disappointing 😞. Have a chat with your " team " and see what they say.

All the best. June x

[PopandMo in reply to Popsic]

Aw I’m sorry you’re still having so many problems after all this time. It’s certainly not easy is it? I just can’t get my weight up and I think anxiety doesnt help with that. I still have horrible coughing fits and heartburn at night and it’s a juggling act with blood sugar. Still, I’m very glad to still be alive so I try to appreciate that! Hope you get sorted out eventually. Mo X

[Popsic in reply to PopandMo]

I still get heartburn at night, not so frequent lately tho, but like you, im just thankful I am still here. The things I suffer now are just blips and if I'm blessed enough to live another 20/ 30 yrs ( got to aim big lol )I'd be eternally happy. Keep in touch with the group Mo, things do get better X

[PopandMo in reply to Popsic]

Thank you for that! Being at a relatively early stage of two years recovery feels a bit scary still. I’ll certainly keep in touch x

[Popsic in reply to PopandMo]

I know what you mean. But you'll get there, be kind to yourself . Take care X

[Spikey]

Please don't worry about your weight. I am 16 years post-surgery. In the 12 months immediately after, I lost 25% of my body weight (which is normal) and have never been able to regain it. However, I am fit and well and lead a full and active life.

As regards the mild hypos, these are also normal. I still experience them occasionally after eating. I suggest that you try to avoid sugar spikes, by adopting a low glycaemic index diet (there are lots of books on this) and eating slow release carbohydrates, such as oatmeal porridge, to maintain a constant blood sugar level.

[PopandMo in reply to Spikey]

Thank you! I have been awful worried about having a low weight, especially should I lose any through illness such as Covid. I guess the worry does t help! I’m pretty good at having oatmeal, whole grains and nuts etc. Probably my anxiety about the cancer doesn’t help. I need to try and relax more ☺️

[phil in reply to PopandMo]

Totally agree with Spikey I am 17 years post -surgery and also lost 20% of my body weight . In the early years I tried to gain weight but that only caused more problems with dumping ect. But I have also been very active and exercise most days. My consultant was not at all concerned with my new fighting weight and said it was much better to remain healthy and exercise than do nothing and put on weight. I fully accept that now and it would be nice if I could put on a few pounds but that is not going to happen. A couple members of our support group are taking Creon but there are side effects and personally I would not like to be on them long term. But that's up to you and the advise you get from your consultant. Try not to get too anxious because we always over think and its quite normal.

Its still early days for you and it will take some time before you find what suits you. There are times when everything is going really well and then some digestive problem hits you ,its just part of the course.

All the best

Phil

[PopandMo in reply to phil]

Thank you Phil for your advice. I’m starting to realise that all the things that happen are “normal “ and yes I guess it is early days. I do get random digestive upsets just when I think things are settled. I’d rather be active and stay at a low weight than sit around doing nothing and overthinking. ☺️

[Popsic in reply to phil]

Hi Phil, can you tell me what the side effects of Creon are please I might be missing something I'm not connecting with. June.