Life With No Stomach.

Two years ago this week, I was laid low in the Royal Free Hospital (Hampstead), recovering from surgery that removed all my stomach and spleen, together with a massive sarcoma tumour, a stomach “GIST”. I have described before the diagnosis and process leading up to the surgery, and the surgery and stay in hospital. It’s time now to tell of life without a stomach.

The short answer is life is good – almost back to “normal”, before surgery, and certainly easier than I had been led to expect. Prior to surgery, I had been warned by colleagues in the GISTUK Support group, and by on-line information, that after a complete gastrectomy I should expect an extended, gradual adjustment to eating with no stomach, progressing slowly from a liquid diet, through semi-solids to solid foods. I was also advised by two different nutritionists, to avoid drinking with meals, and to avoid at all times, “fizzy” drinks of any kind – such as beer, colas and mixers for spirits. I was also warned that I would need to adjust my daily diet from three meals a day, to six – just half a meal at a time. I was also warned of a most unpleasant “dumping” syndrome, that might make life really unpleasant at times.

In fact, it’s been much easier than that. Even while still in the hospital, I went directly onto “soft” solids, after a week of nil by mouth regime (not even water). Instead of six meals a day, I have four – breakfast and supper are in any case small meals. For lunch, I serve a standard meal but eat only half, and put aside the rest for later, in mid-afternoon. Initially I avoided and drinking at all with my main lunchtime meal, but now find I can happily get away with a whisky and soda before the meal – taken slowly, and nursed through the meal instead of water. I have never experienced any hint of dumping.

I have experienced only minor impacts on my diet. I started out anxious to avoid things like toast, with its hard crusts, and replaced it for my standard breakfast with yoghurt or cereals. However, I soon found that I had developed not quite an allergy, but certainly an aversion, to dairy products. I have since got around this problem by using lactose free milk, which is standard milk wiht the lactose filtered out, and is freely available in major supermarkets, (and has the fringe benefit of a much longer shelf-life).

Conscious of the need to limit drinking and avoid fizzy drinks altogether, I initially avoided all drinks with meals, and later replaced my previously accustomed g&t before lunch with a small whisky and water (to avoid the fizz in the tonic). Later, I replaced the water with soda, and now get away comfortably with a standard scotch and soda.

The only remaining difficulty with diet, is when eating out. If it is feasible to ask for a doggy bag I do so – putting this in the same position of my regular habit of dividing my main lunch meal in two. Where this is not feasible, I may order just a starter (sometimes two starters, instead of a starter plus main), or  simply order a standard meal, and send back what I cannot eat. (Some people recommend ordering from the children’s menu, but I have not yet found this realistic). When selecting from a buffet, for example on conferences, it’s easy – I just limit what I take – and put aside some fruit, for later.

So eating and drinking, which is widely discussed as the major adjustments to life without a stomach, have not been the difficulty that I anticipated.

A bigger problem for me, has been that of fatigue and loss of energy. I understand that this is due to a reduced ability to produce vitiman B12. To compensate, I was advised to have a B12 injection every three month. This certainly helps – I am very conscious, before the due date, of a clear decline in energy, and a revival quite quickly after I’ve had it. To complement the value of the injection, I now also take regular B vitamin supplements, in the form of energy drinks. Even so, I am conscious that I am much lower in energy, and tire more easily, than before surgery. (This loss of energy is mental, as well as physical).

I continue to take the targeted cancer drug imatinib, which I was put onto initially to shrink the tumour. Now, I stay on it as a precaution to prevent regrowth. The standard regime is to stay on the drug for either three or five years, and there is a notable academic debate among the specialists, on which is more appropriate. When I saw my oncologist last week (Dr Seddon at UCLH a noted expert in the field), I noted that it is now two years since surgery, and asked how much longer I would stay on the drug. I was expecting the answer either one year more, or three – but was shaken to be told that it was more likely to be indefinitely. The reason for this is that the sheer size of the tumour, which in itself classifies it as “high risk” of recurrence, also meant that it had been squashed up against several  other organs. Thus, she said, it was entirely likely that although the actual surgery was clean and entirely successful, there could be specks of cancerous cells left behind on those organs.  I need to stay on imatinib to discourage the growth of metastatic tumours.

The problem with that, is that imatinib and other targeted cancer drugs are not effective indefinitely. Sooner or later, there comes a point when they simply stop working. When that time comes, as it will, there will be a move to the standard second-line drug, sunatinib, which is stronger – and has correspondingly more difficult side-effects. That too, will in time lose it’s effectiveness, and will be replaced by a still stronger drug, with still stronger side-effects. After that? There could be a fall-back on clinical trials of new drugs, or less conventional palliative surgery techniques – or whole new therapies, not yet developed.

Long term, the prospects are thus not exactly cheery. However, it is not the long term that matters. For now, what is important is that in spite of everything, life without a stomach continues pretty much as normal, with only minor adjustments. It’s also important to note that new drugs and other therapies are constantly being tested, or even coming on stream.

To quote Dave Gorman, even without a stomach, life is good-ish.

 

 

 

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