Life with food one year after diagnosis and ivor Lewis .

Hi Mark

Things do get better! It was probably three years till I was eating the same sized meals as my wife (who has always been a 9 stone skinny thing). I do have a biscuit or sausage roll with my mid morning coffee, and a cereal bar or similar with afternoon tea. The evening meal at home is in two stages: a main course followed by pudding and coffee an hour later then a packet of crisps with a beer in the evening. I tend to avoid sugary stuff with the exception of chocolate which rarely triggers late dumping. So chocolate is a good snack for me.

A couple of things I learned fairly quickly was to drink before eating rather than with or after, to avoid early dumping. And to recognise the feeling of a blood low sugar due to late dumping and to carry jelly babies when I’m out. I did buy a finger prick glucose meter to confirm that my floaty shakes were in fact due to low blood glucose. 

When out for a meal I generally only have a main, and maybe a scoop of ice cream after a sizeable break. Don’t be afraid to ask for a small portion and/or take home a doggy bag.

Eating was never a problem for me 'cause I love food. Some tastes did change though, especially with drink. I don’t enjoy wine so much these days, preferring a pint of bitter. I drink tea now whereas I couldn’t stand it before. I have developed an intolerance of beetroot, which is a shame as I love the stuff!

Putting on weight and keeping up the calories is easy if you choose the foods that you love that don’t upset you. Not being able to digest fat wwas a bit of a barrier and a messy inconvenience in the early years. But my.digestion eventually sorted itself out and I can now enjoy fish and chips or a curry without worrying about the after effects.

Hunger is a physiological thing and the hormones responsible are all to pot for a year or two. So developing an eating routine that you enjoy I think is key. I feel for people who don’t enjoy food. So relax and indulge in food that you love. Take exercise and keep fit.

i hope some of the above is helpful.

Take care.

That’s all very helpful, Brent. Thank you 

Hi Mark,

I would find some feedback about eating useful. I used to love all sorts of food but at the moment find looking at a small plate of food upsetting at times.

I have recently finished my post op chemo and so it may be early days for me. I'm living in the hope that things will get better with time.

Loosing weight and worried about losing too much. I was very over weight at 23 stone. Now down to 16. Glad I've lost some but my relationship with food is the worst it's ever been. No appetite, poor taste, food texture seems different when eating. The obvious difference is having no stomach means you feel full and sometimes sicky very quickly.

Good luck and merry Christmas to everyone.

Geo.

I'm about to face this soon, I have celiac so I've already lost lots of things I used to love eating. I also have nerve damage to my teeth and gums after a wisdom tooth extraction years ago which makes chewing painful. So I wouldn't really miss eating that much if I could get away with it. I'm hoping I can get by with supplementng in between meals with fortified drinks like fortisips? Also I'm wondering if anyone has tried the huel meals? They come as a powder and you just add hot water to get a delicious and nutritional meal. (not sure about the delicious but I like the idea of just adding hot water to get a meal and you can choose the portion size of you only want a small meal)

Also I know Wiltshire farm foods do a small purée meal. I had them for a while when I couldn't eat solid food. They wouldn't be my first choice but at least they are easy to prepare and keep your calories up when you can't face real food 

Bill

thank you  Brent  some useful tips there like many on here being quite new to this situation you worry am I eating enough to sustain yourself  and maintain your weight having dropped from 13.3 at diagnosis to now 10.8 stone  post treatment,  although I’m spot on for my bmi it’s just a shock to your mind the rapid change in your body.
im feeling fit and cycle most mornings but want to build up not trim down so do t push to exhaustion with the cycling . 
Have found that milk has become difficult to drink and Iv always loved big glasses of it . 
I miss the joy of dipping biscuits in tea worried that it will  cause dumping ,  and even simple breakfast cereal like cornflakes with milk are a worry I was finding myself dumping strait after eating a bowl of cereal! 
so now prepaid oats the night before to make a more solid texture . 
I understand the new  ways turn into habits and eventually the dumping and side effects will start to become less common . 

I just find it exhausting trying to stay one step ahead of one of life’s basic requirements eating . 

thanks 

Mark and Brent, do you mind if I ask you both what your surgery involved? Although I am only into my first round of chemotherapy, I have been informed that my surgery will involve the removal of the lower half of my oesophagus and the top third of my stomach. Is this pretty standard? It was certainly a shock when he showed me on a diagram what he was planning to do!! I presume the post-surgical relationship with food might be at least partially determined by the quantity of stomach removed?

hi cool  yes your procedure sounds like the same as mine although I was told they removed 80 % of stomach and used the rest to rebuild the oesophagus commonly know as the Ivor Lewis procedure  . 
One thing Iv found from this whole recovery process is be kind to yourself it is very hard at times and some days it’s so hard on your mind and body and you question if it will ever get better ! 
well it does get better when I look back over the last year and think about how low and I’ll I was feeling to where I am now you have to pat yourself on the back and just keep your mind strong and positive and believe that we can survive this . 

Yes the Ivor Lewis surgery was a bit of a shock when it was first explained to me, too. But it has been performed for decades. With good success.

As I understand it the stomach is refashioned into a tube and is pulled up into the chest to replace the oesophagus which is removed. The stomach’s lower sphincter is then approximately in line with the diaphragm.

The stomach’s lower sphincter would normally release small amounts of churned up, partially digested food into the small intestine which would trigger a raft of hormones to control the further digestion of the food. But with the new arrangement the control of food entering the small intestine is not as well controlled plus the food is undigested. Too much too quickly leads to (early) dumping. Eventually the body gets used to the new arrangement and new habits lead to a new normal which is quite acceptable. But it took my body three years to establish this new normal. In between I still managed long haul holidays ticking off the bucket list. And have travelled the world during the last ten years.

I think it’s fair to say I have lived a happier life since the surgery. 

Your weight pre and post surgery are pretty similar to what mine were.

My weight is now stable at 81kg (not sure what that is in old money)

Hi geo I have been following your progress from the start and as you know this is a whole new world we have entered. 
there’s no getting away from the fact that it is all a worry but we can get some comfort from the likes of Brent and others who have got to a new normal . 
I know a guy before I found this site who is now 14 years post op and he’s doing very well .

Iv found that as time has gone on my food tolerance has changed and I am becoming much more aware of how different foods make me feel .

strange when you think that before this I had no real issues  and would eat absolutely anything  without a thought . 
Yesterday I was at the 02 watching a show with the family ,but found myself sleeping for half hour with all the noise going on around me . I’m sure it was the burger from tgi Fridays that knocked me out that I’d eaten an hour earlier 

I still get frustrated with not being able to take a drink with my dinner . And Portion sizes are smaller for sure . 
I find I get headaches all-so with certain foods and drinks which  is frustrating . 
Overcoming the anxiety of food  can be quite crippling at times  in the early stages , but I’m learning that it’s ok to not be eating to the clock all the time . 
good luck geo and will try and share any helpful hints .