Life with food one year after diagnosis and ivor Lewis .

Hi Mark

Like you i was very apprehensive about the effect of the operation on my eating and appetite as I am a keen cook and love food. I continued doing this during chemo although my wife had to tell me how it tasted!

I had the Ivor Lewis operation in June (aged 76) and it seems I was very lucky compared to many in retaining my stomach although in rather modified form. I also kept my appetite and ability to eat pretty well which required learning not to eat too much which gives the unpleasant dumping and fatigue we all experience I think.

I find 6 months on I am able to eat reasonably normally and generally back to 3 meals a day if slightly smaller portions eating anything I fancy. I have snacks between sometimes like tea and cake and my weight is back up from 10st 1 to 10st 12 so quite happy. Can have wine or beer with meals and consider myself very lucky indeed.

I realise I have been very fortunate and a little reluctant to mention it here when many have not been so lucky but hope it may encourage others who are approaching this fearing the worst.

Best Regards and good luck

Vaughan

Thank you Vaughan, I think it is so important to include good outcome stories like yours to give us all some hope and confidence in the future. Best wishes for your continued good health

Hi Mark,

Thanks for your reply. I'm sure eating will get better as time moves on. I went to my GP the other day due to my worries about my issues with eating. I don't know what I expected her to do. Some sort of magical advice...lol. what she actually told me was that I had been through a traumatic experience and she thought that I was being hard on myself. I'm only 3 months post surgery and 3 weeks after my last chemo so I suppose she is right. 

From other posts I am now realising that it will take longer to get into a new eating regime.

Thanks again

Geo.

Hi Mark 

My husband is 9 months post op (2/3 stomach and lower oesophagus removed). I remember that around the 3-4 month point we felt really down and wondered if the symptoms would ever improve as the whole day was dominated by dumping syndrome (early and late), nausea and no appetite and eating was just a chore. Now he eats 3 meals a day of pretty normal size portions and tops up with nuts and cheese and crackers. The dumping syndrome still happens but much less frequently and he’s taken to eating liquorice to ease the symptoms of feeling hot and tired etc. We’ve approached this whole thing by making sure we’re doing everything to eat well and keep a positive attitude so have cut out most ultra processed foods and getting exercise on most days. At the moment, the main feature is fatigue and Paul needs a daytime sleep pretty much every day. He’s finding it a bit difficult that he’s not got more energy but we’re trying to get the balance right of doing stuff that helps with overall wellbeing but also resting. We’re so grateful that he was able to have the operation as we were initially told it wasn’t possible as the tumour was so large (T4aN1M0). 

We were told the first year is hard and it is as there’s a lot to come to terms with and the whole experience is pretty life-changing! Keep us posted on progress 

best wishes

Jane 

I remember I used to have an afternoon nap during the first couple of years, and still occasionally feel like one!

Probiotics definitely helped settle my digestion and I suffered dumping less. 

The new normal finally established itself during the third year. Soon after that I started gym classes, Pilates and more energetic body balance , three or four times a week. They helped to improve fatigue and energy.

Brent Iv had no guidance in the way of suplimemts and vitamins  apart from multivitamin gummies . 
I’m interested in what type of pro biotics would possibly benefit myself  . 
I’m finding lots of foods hard to tolerate now , which is very frustrating  thanks . 

I tried lots of probiotic foods in the early days such as kefir (which is very pleasant) available from supermarkets but is a lot cheaper from polish shops. I ended up taking acidophilus capsules (and still do to this day along with multivitamin/A-Z minerals tablets). I get my acidophilus from Holland and Barrett but are widely available. Some people find a short course of B12 helps with fatigue.

I

Hi. Are you okay?

Hi mark I’m 6 years post op and I still have a min of 3 meals a day with snacks in between, some times I have to walk away from my evening meal, leave it an 1 hour and then go back. 
Try not to eat to much often as this can stretch the stomach and it has very little space now.

It really does get easier or more the norm. 
meals out can be challenging but as long as your not doing it 3-4 times a week you should still be able to manage a small normal meal or at least a good portion of it. 
One way to help with this is reduce your food intake for that day day 1 price of toast for breakfast if you normally have 2 and so on. 

As for sacrificing your health absolutely not, I go to the gym 3 time a week (some weeks) and Im am fitter than I have ever been.