"You learn to cope. I eat small meals, more often. I eat when I'm hungry rather than having three meals a day, and I don't like to eat after 5.30pm or 6pm in the evening. If I go out for a meal I have to stay up until midnight so that my food has had a chance to digest. I also have to sleep at a 45 degree angle; otherwise, you can wake up in the night feeling as if you're choking."
I am now 8 years out of surgery, seems like a life time of learning how to eat, what, when and how much, but I'm now at a level which is comfortable and allows me to lead a very active and what I consider a normal life.
Keep a log of when you are unwell and what you had just eaten before, it is not always what you have eaten but when and how much, volume is just as important as when and what.
I leave at least an hour between food and a drink, hot drinks can be a problem sometimes as well.
For me, refined sugar causes issues so changed to un-refined natural sugar in drinks and when we cook, but everyone is different so do try and isolate what may cause you issues.
I don't get hunger or full feelings since surgery, so for me it is timing and volume control most of the time, but even after 8 years I do forget sometimes when out with friends and family.
I can now be comfortable on just 4 pillows if I do not eat after 7pm and last drink a good hour before going to bed.
This is probably the biggest issue for those after surgery. Some people feel hungry; others don't. This may be partly because the hunger pangs get generated from a particular part of the stomach that may no longer be there and which normally generates ghrelin, the hunger hormone that sends signals to the brain. So some people have to eat by the clock rather than by hunger feelings.
Eating little and often is a key thing. There are some foods that cause trouble more than others. There are some reports from patient discussions on the OPA website under Food Workshop and Quality of Life:
People do vary according to a) the surgery and what bits have been removed; b) the diet they used to have and what food they have always enjoyed and would want to get back to; c) the content of food in relation to refined sugar, dairy-lactose, fat content etc; d) the texture (eg some meat or fibrous food might always get stuck on the way down; e) quantity / frequency; f) toilet / wind consequences and g) the taste buds that have changed and will probably, at some point, recover to 'normal'. Plus some other issues like food that is OK one day and not OK the next, for no apparent reason!
So don't feel alone if this seems terribly complicated and devoid of any logic. Careful monitoring of what you eat and the effect it has usually does the trick. Although some people might end up opting for a permanent diet of porridge and never like the thought of eating ever again, the system, for most people, does get trained into a condition that allows a reasonable compromise and quality of life.
It is really good you have learnt to cope! I say got used to it seven years down the line! I tried everything and anything, good support from Medical team! Had all my stomach taken away, no bowel control got better, used to it! Priceless, funny! My three year old grandson been nagging naughty weeing and pooing in his pants sees me cleaning up not got to the toilet in time says "naughty girl nanny"! ha
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Faint and low heart rate after food
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Swallowing difficulties 5 months post-op
