Sore, tired and dumping syndrome - tips please

[Janashlin]

I am 9 months post op from the Ivor Lewis procedure. I had major complications and spent two months in intensive care. I’m starting to feel human again however my back is still very painful. I get extremely tired and I have dumping syndrome at least once a day and some days every time I eat. For those of you who have already been through this experience, how long before these symptoms started to get better for you? Any hints and tips appreciated.

[SurreyGuy]

Hi there.

Have you tried keeping a food diary? If not I suggest giving it a go and write down the exact times and what you eat and then the time of the symptoms. I found having a milky drink with carbohydrate (such as cake) gave me dumping syndrome as I assume the milk was carrying the food through far too quickly so I changed to black coffee and it improved. I found out other examples too such as high nutrition drinks.

Over time you can improve dumping through your diet as you work out what your triggers are. For example, If you are getting dumping early then the volume of food can cause your gut to pull in water which causes diarrhoea so that would need smaller portions. If you are getting late dumping then this could be due to sugars which can make you light headed etc. so this would need less sugar. It is quite individual.

I did learn that fluid and food together can cause a problem.

Also, over time our body adapts to its altered state and also of course changes with age and consequently symptoms can also change. I have just restarted a food diary after 12 years as I am now getting satiety and I am trying to work out if there is anything i can do (no pattern so far).

So, in summary. It does get better as we learn how to manage it. Having said that, there are of course some people who get dumping more severely than others. So we are back with the individual thing again.

I hope that helps a little.

[Janashlin in reply to SurreyGuy]

Thank you very much for your response. I was jerking a diary and couldn’t find a pattern but will start again. Nice to hear you are 12 years on. Stay well.

[Mindcrazedbanjo]

I'm 3 yrs post "IL", I very rarely get dumping now, ever since I found out what causes it which is suger. I nave cut all suger out of my diet, which isn't anywhere near as bad as it sounds cos I just use Xylitol from holland & barrett instead, tried Stevia but that tastes funny, sugars really bad for you and actually feeds cancers, thats why they use glucose with the PET scan to highlight the cancer areas that feed on it. Keep a food diary if you want to make life even harder for yourself, its bad enough pre-preparing meals, time becomes of the essence. Eat 6 small meals a day and chew everything til theres nothing left and weigh yourself once a week. Chips are good and fattening, stay away from gloopy stuff like yoghurts, it seems to cause trapped wind which in turn makes for nausea, peanut butter cookies are good and easy to make, nuts in general are easy to eat and to carry around, hope this helps.

[Janashlin in reply to Mindcrazedbanjo]

Thank you, will try your suggestions. I do find dairy seems to be a trigger, but not consistently. I will pay more attention to the sugar. Quite a journey, stay well.

[The_OPA Partner]

We have free downloads on the OPA website opa.org.uk

[liz_crisp]

Hi Janashlin, I am 9 years down he line and still get dumping, over the years I have found it can be caused b many different things and everyone is different, As Surryguy said there is late dumping and early dumping, I find if I eat and move around after eating I am more likely to get dumping. If I eat a larger meal I will get dumping unless I do it medditereainian style and eat over a longer period of time more smaller plates of food . I also found that as time progresses and your gut relearn S how to deal with food dumping and its causes change. Different foods cause it if I don't chew my food it can be a problem. But I always carry dextrose tablets with me. You learn to recognise the beginning of dumping and if you swallow dextrose or some people eat a banana , a friend always had toffees worked for him. you used to be able to drink lucozade or coke but the new sugar rules mean that you can't rely on them to have the sugar in to put you right. i had a problem with it when I was about 6 years on and discovered it was to do with the signals your brain sends to your gut. The body is a wonderful machine and the vagus nerve a big part of it. When we have the op it is cut and takes ages to heal and get working right. due to the shortened length of my gut when my body was expecting food and released the insulin my body had dealt with the inflow and the released insulin just cleared all remaining sugar out my blood. Took a while but t is better and I try to remember to either eat at regular intervals or I eat small snacks all day if I'm out and working.

Food diary is a good idea if you don't want to write it down and have a smart phone just photograph everything you eat and drink the photos are normally time and date stamped. If you can keep a record of your activity too ie did you sit for a while after eating or did you get up and do lots of bending, lifting or walking.

In the beginning little and often was best for me I grazed all day, your gut is learning like a toddler to eat foods again, I still find coffee can be a cause of stomach cramps as a drink but in cakes, puddings etc it's fine. Also as time goes on what once was a problem No longer is, so don't write yourself off as lactose intolerant or fried foods not good. I eat ice cream, youghurts, cheese

And the odd occasional KFC now with no problems.

Good luck Lizzy

[Janashlin in reply to liz_crisp]

Thank you so much for your reply and information. Very heartening to hear you are 9 years on from your surgery as well. I’m going to stock up on the dextrose tablets and give them a try as well as your other advice. All the best to you.

[Mauser1905]

There is good advice above. Please have a look into OPA literature on dumping. Some dumping notes from me below:

Typically there are triggers which cause dumping like food, physical activity, intolerance etc. However sometimes there just isnt a trigger, and one may get dumping on proven foods too, just happens.

After meals oesophagectomy patients may get hypoglycemia or hyperglycemia, many if not everybody.

Hypo is where the blood sugar drops significantly below normal levels and I e become sweaty, panting, shaky and goes weak in knees and often follows fainting. For such hypo symptoms post meals carrying dextrose tablets is very handy. If I read right, then most of the oesophagectomy patients on this forum have stated they suffer from hypo.

Hyper is when the sugar levels rise significantly above normal levels immediately after meals. When this happens the palpitations go high, breathing goes shallow, and water from the organs is drained so quick so as to dilute the blood sugar and to bring normalcy to sugar levels. This cause slowdown and almost near shut down of the functions not essential. I experience this hyper every time. For hyper dextrose doesn't do any good.jist need to rest and recover and rehydrate after some time. Having said that at times when out and about I may get shaky legs due to physical exhaustion and will be immensely helped by a top up of two dextrose tablets. It becomes a second nature to carry dextrose in pockets of the jackets and back pack as insurance.

Personally I find milk if not boiled, cold milk is a trigger, prawns are a trigger, doritos are a definite dumping trigger, sometimes talking too much and walking etc immediately after meals is a definite trigger. Sugar and gluten is a trigger.

Also noteworthy is that the dumping is a collective group of reactions and not everybody will experience every single of the reactions nor it will be identical amongst the patients. This is influenced by nearly all the variables one can find in general , age, underlying health issues, lifestyle and continues.

There are good notes on the OPA about the dumping as well nhs literatures.

You just have to tweak about your routine, food habits, lifestyle complimented with extra positive and strong attitude about life. Mind plays a significant role in the recovery, be strong and positively optimistic. We all get there eventually.

At times it is frustrating and not doing anything. just resting is indeed pleasure for the body and mind.

[Janashlin in reply to Mauser1905]

Thank you do much for your response. After reading this I think I am more hyper than hypo. Certainly very unpleasant and wearing me out. Seem to be getting worse instead of better.