Living with a Gastrectomy: One Researcher's Experience. Content from the guide to life, the universe and everything

Living with a Gastrectomy: One Researcher's Experience.

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This is an account of a personal experience, which hopefully will be useful and informative to those who await the same operation. I have to say that I feel very healthy, considering the fact that I underwent such a drastic procedure. This should bring hope to all those who find themselves needing such surgical help. I eat well - almost anything - but in small quantities. I experience appetite and hunger and enjoy my food.

In August 1996, I underwent a gastrectomy; the (more or less) complete removal of my stomach, to eradicate a growth that was 'on the turn' to becoming malignant. I was fortunate enough to be diagnosed early, so that I did not require chemotherapy or radiotherapy. The procedure was an effective 'cure' in itself. A hospital doctor told me that learning to live with the results, such as getting used to the 'new anatomy', would take some time and he proved to be correct.

It took me a full two weeks to reach the goal of coming off the drip feed and being able to eat solid food again. In the early days I had to learn to chew food thoroughly before swallowing; when I forgot to do this I suffered quite severe pain for a few minutes, occasionally for an hour or two, depending on the nature and consistency of the food itself.

Once I was eating again I underwent regular vitamin B12 injections. At first, they gave me one every month, but found that my bloodstock of the vitamin was far too high. It has been balanced correctly ever since to one every two months.

Immediate Post-op:

For some months after the operation the blood is monitored in order to determine the presence or the absence of cancer cells, and additionally two or three endoscope inspections are carried out over several months in order to verify the results; the timeline lasts about six to thirty-six months.

For the first week or two one is fed through a tube that runs into the body through the upper-right chest and down inside the vena cava, a major blood vessel (vein) leading into a heart chamber. They call it a 'central line' (nothing to do with London Underground, you understand). So you are liquid-fed through your heart until you are healed enough to take solid food naturally by mouth.

Interestingly, the large bag of liquid food that hangs from the rack by the bed is 'tailor-made' in order to suit an individual's personal particular nourishment needs. Daily blood tests determine what your body is short of, and by what measure it is deficient in a certain mineral or body chemical. Each new bag is adjusted to the updated needs shown as required by the body. The laboratory mixes the brew precisely in accord with the latest blood analysis.

Resuming 'Normal' Life:

First steps:

After leaving the hospital, and taking a little walking exercise, the intestines seem to be flopping about inside the belly, jelly-like. It's a weird sensation, due to the natural abdominal tissue that normally holds them in place being broken during the operation. This is not painful, but an irritating tickling sensation that will make the patient want to walk very slowly to avoid. This goes away after about three to four weeks as the internal tissue heals. It is yet another example of the doctor's advice about getting used to the anatomy.

Eating again:

Now, you will understand that the patient's capacity for food storage, which is one of the purposes of the stomach, will be severely reduced. This is because the bottom of the oesophagus, the tube that leads to the stomach normally, is now connected to the upper intestine, which is surgically stretched to provide a cavity for the food before its digestion in the remaining long tube of upper intestine. It is also advisable to have a drink at your elbow such as water or real fruit juice, (not alcohol or fizzy drinks, which can cause intestinal wind and restrict your already small capacity) this helps with the mastication of your food and softens it. Tea and coffee should also be avoided, as the caffeine destroys much of the vitamin and mineral content of your food.

A minority of patients have problems starting to eat again. Some will not eat, fearing great pain if they do so. Doctors have to persuade them to eat. Most are alright once they have swallowed their first couple of spoons of soup or other liquid; they then have the courage to try their first solids. A very small number of patients never eat solids again and have to have all their meals put through a liquidizer. This has a very restrictive effect on one's social and work situations.

What to eat and what to avoid:

Your diet should be mainly of a highly nutritious and low bulk nature. It is essential to eat well in order to help the healing process. Again, alcohol can destroy the vitamins and minerals your body needs for that process. The diet should also be balanced well between proteins and carbohydrates, with an element of fibre to help peristalsis (the muscular contractions which push food along the intestines). One learns how to balance one's intake of fruit and vegetable fibre over the months after the operation. Meals need to be little and often, say every two hours or so. This presents a problem for patients who are working; and meeting your dietary needs in some professions can be well nigh impossible.

Another important factor is the absorption of essential iron for blood production and health. This is not possible in the normal way, because the stomach performs an essential contribution to iron absorption. The stomach being absent, it cannot naturally produce the vitamin B12 that is needed for this process. You need to have a vitamin B12 injection periodically, about every six weeks; the frequency largely depends on one's absorption of the preparation, which is a synthesised compound of hydroxocobalamin delivered intramuscularly into the arm. The blood is regularly tested to determine the frequency of injections. There is a need for plenty of vitamin C both before the operation and permanently thereafter. Vitamin C drinks are a good source, and the usual fresh fruit and vegetables the best. The absorption of vitamin C is necessary to that of the B12.

In the long term:

I had to learn to live with the condition and make adjustments to lifestyle accordingly; otherwise, my body would most certainly remind me in no uncertain manner. I discovered very soon after the operation that if I ate too quickly, or ate too much in a short time, I would experience what is called the 'dumping syndrome'. This is when food passes into the intestine too quickly. Its effects are nausea, some pain, light-headedness and palpitations. Sometimes the palpitations are a fast heartbeat, sometimes a 'strong' heartbeat so forceful that it shakes the body. The blood chemistry is altered or unbalanced by the sudden influx of food, something similar to an effect of diabetes. These can be very frightening episodes, on some occasions lasting up to hours once they have been 'triggered' by inappropriate eating habits. The answer is to avoid both overeating and eating too quickly.

Anti-Dumping Post-Gastrectomy Diet

I found that even what would be a light breakfast to most people; that is, two Weetabix biscuits with semi-skimmed milk and one teaspoon of sugar, plus two cups of tea with milk and one sugar, triggered an episode of very fast palpitations. Through trial and error I found the answer was to have only one wheat biscuit with a small amount of semi-skimmed milk and no sugar. Instead of tea, I found that one to one and-a-half mugs of water before eating breakfast, which could be repeated after about one hour to keep up my required intake of nourishment, eradicated the possibility of an episode of palpitations. One difficult problem is that of knowing when I am 'full'. This is because the stomach has receptors that pass the message to the brain when one is full. No stomach, ergo, no message to the brain to let you know when to stop eating. The first indication is pain; and sometimes the dumping syndrome.

Origins of the Disease:

My problems stem from more than fifty years ago, when I developed an ulcer at age eleven. By the age of twenty-three I had undergone three deep abdominal operations, all related to the previous ulceration and a resultant adhesions problem. So the gastrectomy was the fourth and most drastic surgery. The medical and surgical techniques in the 1950s and 60s were nothing like as sophisticated as they are today.

Most gastric problems are relatively minor these days, and with modern medicines can soon be put right.

Present lifestyle:

I now lead a reasonably normal lifestyle.

My wife and I are keen walkers. We only use the car for longer journeys and walk into town to shop, etcetera.

Some people ask me whether I have a 'bag' (colostomy). The answer is no; colostomies are only used for bowel troubles. All my 're-plumbing' is contained within my body. You wouldn't be able to tell, except for the foot-long scar down the middle of my abdomen.

I no longer have the 'apparatus' to be able to be sick, if I ingest something disagreeable, it goes out the other way! I need to carefully guard against food poisoning. I avoid shellfish at all costs.

As regards to nourishment I can sometimes lose a little weight through malabsorption, especially when I am due for my two-monthly injection of vitamin B12 (ie, six per year) or because I am neglecting to intake enough vitamin C via fruit juice and/or vegetables and fresh fruit.

The heaviest I have ever been in my life, before and after the operations, is 10 stones and 5lbs. I am currently 9st 10lbs and 5' 10" tall.

It is surprising how well the body adapts to digesting its food via the secretions from the gall bladder and the liver, such as bile; and it can do this quite efficiently, it appears. There is, of course, the question as to how much of the stomach is removed in the gastrectomy. My surgeon told me that this is dependent on the extent of the growth, but that they try to retain as much of the upper part of the stomach, which is the main acid secreting area. There are a number of variations and options that cover a range from the 'partial' gastrectomy to the 'full' gastrectomy. I can digest surprisingly more efficiently than I expected to after my 'gastrectomy', and so, even though my surgeon declined to enlighten me about the extent of my surgery, and told me that it was 'academic', I feel that I may have retained a degree of acid secreting tissue.

I have been eating, on a daily basis, a large sweet and very juicy pear, as well as about eight prunes a day and two or three pieces of dried peaches - all delicious. They provide all the fruit needs of the day. It is good to supplement them with a natural fruit drink and also to liquidise fruits and vegetables in order to make a 'smoothie'.

I always drink plenty of filtered and boiled water to prevent dehydration and the dumping syndrome. The filtering and boiling takes the chlorine, limescale, heavy metals and other organic impurities out of the local tap water. It also guards against the intake of bacteria that may cause food poisoning.

The water company seems to use rather too much chlorine in our local supply.

Final Thoughts:

Finally, let me say that you might think that all this information would, or should come from your surgeon or GP; and that they know and understand your problems. This might be the case with some medical practitioners, but unless they have gone through the operation themselves, how can they know how it feels? Nobody can tell you quite like the gastrectomy patient what it really feels like to live daily with its effects.

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