I had the full range of treatment from stage 3 oesophageal cancer including radio and chemo theraphy and an operation cutting away part of the oesophegus and the stomach. Having survived 2 years I have a few issues with eating but particularly with dumping syndrome.
I was wondering if anyone out there who has been through a similar experience can offer me any advice. Also I am very happy to discuss what i have been through with anyone who would like me to.
You have come to the right place. Ask away. I am 18 months post op and have managed to control my dumping ( both early & late ).
Thanks Bruce...is it just food related or does it depend on how you eat during the day..I. e eating at regular intervals?
Hi there,
I will be 10 years out later this year, lost most of my oesophagus and 75% of my stomach.
You don't specify your eating issues but could be linked to dumping syndrome problems.
From my experience I was still settling down at 2 years, the treatment is a big assault to the body and it does take time to recover.
I still have issues now and again with DS and can put it down to how and what I eat, sugar especially is a cause for me and sweet & sour sauce.
Everyone is different, so there is no set list of things to avoid, I kept a diary of what I had to eat before the DS and over the years I have a good idea of what to avoid, worth a try.
It will get better, it was 3 - 4 years out for the DS to settle down for me, although once in awhile it happens if I eat too much or something that is too sweet or a hot drink too soon after eating.
Kind regards,
Dave C
Thanks for that Dave..I have started keeping a food diary but I think it is also linked to when I eat and what I do during the day as well.
There are some factsheets on dumping syndrome here:
opa.org.uk/pages/factsheets...
Quite a lot of late dumping seems to be related to insulin spikes. In other words, the body creates loads of insulin to counteract the sweet stuff rapidly coursing through your system. It can lead to sudden fainting if it gets extreme. Trying to reduce the severity of those spikes is what low glycemic index diet is trying to do. It means trying to avoid food with added sugar and sweetening agents in it (eg anything ending in -ose). Digesting carbohydrates can also generate sugar in the system, so it does become complicated. The overall idea is that if you eat food that converts into sugar more slowly, the digestive system does not get such a shock.
Taking glucose tablets or something sweet does make a dramatic difference and sorts you out for the immediate effects because this rapidly re-balances your system, but the diet issue is more on the preventive side. Eating a diet as if you were diabetic can be a good guideline. Some people do use sugar:insulin meters and find that their levels vary dramatically in a short space of time after meals.
interestingly I am on a strict diet no meat..refined sugar or dairy and minimal processed food ..and really watch what I eat..been doing it for 18 months ...it could be that the mix of food I eat is not right...
Have you tried eating half a banana 10 mins after you finish your meal/snack. The slow sugar release from the banana (not too ripe) can offset the insulin spike.
Dave's experience almost mirrors mine. A well written response.
I am and was a vegetarian (no religious grounds for this just personal choice). So maybe worth bearing that in mind if thinking about what I have done.
Chocolate is the single biggest trigger for me. It is 100% guaranteed to cause late dumping that can include sever hypoglycemia. 4 quality street and I will be in big trouble. Most obvious sugars will have a similar if not lesser impact. I now try and avoid sugary stuff at all times.
Eating too much is another trigger. I have found this difficult to control as "too much" is very subjective. One day I can eat more than the next or less than before. But just one extra mouthful can see me suffer cramps, chest pains etc for a couple of hours. On occasions I have resorted to the time honoured tradition of sticking my fingers down my throat to relieve what I know will be the inevitable pain and discomfort.
Stodgy foods are also not so good for me. My surgeon did once tell me (and this works for me) If it wouldn't go down the plug hole? It won't go down you!! That is good maxim as I can often visualise food that will be likely to cause an issue. White Bread, doughy foods, some filled pasta's are all likely to give me an issue.
I hate the discomfort as it makes me surly and tired and not a person that I would want to be around. I can see myself looking and sounding irritable when I should not be. To try and avoid this and preserve my marriage, I try to eat small amounts of foods that I know I will tolerate. Boring it is but better boring than grumpy and uncomfortable. It also allows me to commute and work full time.
I still get hellishly tired, where I feel I would just conk out unless I try and fight it. I also still suffer from vomit inducing back pain (under my left shoulder). This is being treated now and I am feeling some improvement.
I look good and healthy and I am alive. Every day I learn something different about eating and peculiar twinges, pains, twitches. I get reassurance from reading the experiences of others on here.
Good luck.
Bruce
Very useful thanks Bruce ...I really cannot complain compared to the various other problems you and others have ...mine is quite minimal at the moment. All the best.
Well, it's all relevant to you ;ˆ) When I returned home from my surgery. I was desperate to be able to walk my two Siberian Huskies again. Just to feel normal and not smell hospital all the time. Five minutes into my first walk and....TWANG I developed plantitis in my heel. Boy did that hurt, and stayed hurting for some weeks. I kind of felt somehow cheated that I should survive cancer then the surgery to end up immobilised by a sore foot. I also started to look healthy at an alarming rate. This meant that I was the fittest looking person n the Doctors waiting room, to the point that I could sense people were looking at me thinking, whats he doing here, there's nothing wrong with him.
On a serious note here. The daily walks in the fresh air helped my recovery. I live in the countryside so can walk straight out into rural lanes with little or no traffic - bliss. My health misfortunes were doggies good fortune as they now rarely miss a daily walk.
Maintaining a meat-free diet in a high body stress situation (post chemo and supermajor surgery) requires a high level of protein intake and monitoring of calories. When a person doesn't take in enough calories in their diet, the body burns protein as a fuel source instead of using it to build muscle and vital proteins.
I would try to figure out how many average calories that you take in daily for five to seven days. I don't know your size or activity level, but the normal person with a moderate activity level needs at least 1,800 - 2,000 calories daily, with protein of about 1gram per kg body weight.
If you are getting enough intake given the restrictions, then you can tinker with certain foods and avoid others. If intake in insufficient for size or activity level, then try to get in healthy snacks such as yogurt.
I eat five to six times daily, with nothing after 1900 at night (to minimize nighttime regurgitation and aspiration). Few fats at supper, but more as tolerated for dinner meal. Not many processed foods as all have said due to sugar. No cheese or peanuts for me after 1500, again due to nighttime regurgitation. I must rest for 30-45 minutes after larger meals due to dumping, and have learned which foods treat me badly.
Good luck, and keep learning every day. I am still figuring it out six years after surgery.
Good advice from everyone!! I am 9 years March worked really hard with diet had help with specialist as I had bowel problem too. I would record everything to see if there was a solution, but unfortunate any diet or tests helped. Two years is still early days I found with time it does get easier and I have got used to living with the ailments. I am unable to work due to the bowel and fatigue. Had several scares too but just the body out of sink the specialist thought. Hang in there perservere it will get easier!! Good Luck
Thanks I hope it will.
If you are eating healthily (low sugar, low fat), not overloading your stomach at any one sitting, and getting plenty of exercise, then it is possible that you are not suffering from dumping at all, but have developed an intolerance to certain foods. In particular, I have met fellow patients who have developed a fibre intolerance, which is a problem if you eat lots of vegetables. The only way to find out is by keeping a food diary and systematically eliminating and reintroducing specific food groups into your diet.
Good luck.
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