Nine months ago I had a total gastrectomy. During the first few days I had much discomfort and distress because eating even a small amount led to both colic and diarrhoea. Fortunately, this period passed as I learnt what to do and as the disturbed reflexes that link the alimentary canal re-coordinated themselves. This much they tell you at the hospital but they tell you very little else.
Since there is more to say, I offer the suggestions and tips below in the hope that they may be of use and collected in an anthology of others' experiences - which may well be different. Finally I offer a tip which has, for me, resolved most of the problems.
The challenge is to eat enough to have some energy and avoid losing weight. The problem is discomfort on eating. This comes in the form of pain where the ileum is joined to the oesophagus, colic in the intestines and sudden uncontrollable diarrhoea (known as 'hurry' and 'dumping'). There are ways of avoiding, or at least mitigating, these problems.
Although I was advised to sit upright after eating, the most comfortable position seems to be to recline on a couch. Indeed, eating at the table is the most uncomfortable position. 'Grazing' while walking about seems to work quite well but sitting at table definitely can be awkward. This is compounded if you have delayed eating and become tired when the eventual meal will be even more difficult to eat.
There is an assumption that invalids should be fed soup and gelatinous porridge or gruel but both involve a lot of bulk for little nutrition. Further, soup may not need chewing but actually the act of chewing is beneficial and slows down the rate at which you ingest the food. Real food is better - although at first in very, very small portions - and pleasurable.
Generate confidence and successes for yourself by only taking small portions onto your plate. Take only what you know you can eat. As any child will tell you, food left on the plate becomes the subject of reproach whereas taking a second helping is always a treat.
I asked my neighbours to bring me small plates of their 'left-overs'. This variety of interesting dishes is fun and very convenient! Similarly, in the restaurant, I ask for an extra plate and treat my friends' meals as my buffet. Leave room for their puddings!
Certain foods do not suit you - but most are fine. I find unpleasant food or drink that is highly spiced or acidic. I no longer eat curries, pickles, certain fruit and I forgo all wine. Fizzy drinks and cold drinks cause discomfort so I avoid or warm them. But everything else is OK if I chew it well and take it slowly. When the diarrhoea does strike, beware jumping to conclusions and excluding a particular item from your diet on the basis of just one occasion. There is a lot of random luck involved.
I have a supply of snacks which I enjoy eating between meals and if I wake in the night. Custard tarts at 180 calories each, ginger biscuits at 35 calories and bananas are my delight. Vegetable juice goes with gin quite as well as did the tonic water. On the other hand, the prescription foods fail to please.
On hot days when I need to drink extra fluids, I add a little sugar to the glass of water which makes it much easier to drink.
Since most of one's calories are used to keep one warm, if you wear extra clothes you will not need to eat quite so much!
Sometimes colic does recur. It is painful and very unpleasant. Peppermint oil is widely recommended and works very well. Place a few drops in a cup of boiling water, recline on a couch and slowly sniff and sip it.
I assume my absorption of nutriments is imperfect so I take the following supplements: multi-minerals, extra magnesium, vitamin C, vitamin E, a B complex vitamin pill and a quarterly B12 injection. I also take acidophillus and live yoghurt to boost my intestinal bacteria.
The most useful discovery was the value of uncooked porridge oats for breakfast. Breakfast had been the most difficult meal. Now I have discovered that 85 grams of porridge oats (best quality from a health food shop), soaked overnight in full cream milk, sometimes with currents and sunflower seeds, is easy to eat and remarkably effective for the whole day.
I eat it as I wander around making my early morning cup of tea. It provides almost 500 calories which is a wonderfully significant part of my daily requirement and has eased the obligation to snack. But even more useful, it seems to regulate and stabilize the whole system which now feels quite robust: 'hurry', 'dumping' colic and diarrhoea are no longer a problem. In fact, my difficulties stemming from the gastrectomy are largely resolved.