I Just Can't Stomach Anything Anymore

[RJG]

Hi everyone,

Unfortunately, there are quite a few people who have had to face the prospect of a total gastrectomy, and there are a number of guides about what to expect soon after surgery, but I haven’t seen much about the longer-term aftermath of this drastic treatment. This post is intended to fill that void, albeit with a single person’s perspective on life without their stomach.

I was diagnosed as having gastro-oesophageal cancer on Easter Monday 2017. The “treatment protocol” called for a series of chemotherapy, followed up with removal of my entire stomach and a few centimetres of oesophagus immediately above my stomach, and then finished off with a second series of chemotherapy. The total gastrectomy occurred on 21 August 2017. Pathology on my stomach and the surrounding lymph nodes that were removed indicated that the first round of chemo had managed to kill the cancer and that the cancer had not spread to my lymph nodes or to any other organs. Pity that my stomach needed to be extirpated in order to find out that the first lot of chemo worked. For a diagram showing the replumbing of my gastrointestinal tract, see https://www.nostomachforcancer.org/images/Gastrectomy-Before-and-After.png.

That means that I have been living without a stomach for 2 years now. What the heck? How is this possible? Obviously, it must be possible or else I wouldn’t be writing this. But considering what the stomach does, it is really quite incredible that life can go on pretty normally without one. However, there are a some new rules that come in to play. More on that later…

First of all, what is the impact of a total gastrectomy?, There are a few digestive functions that happen to get “thrown out with the bath water” when your stomach gets cut out.

1. Holding bay – the stomach is a vessel that expands to store the food that we swallow. After a while, the stomach contents are released slowly, predominantly in a liquid form, into the small intestine where more of the digestive process takes place.
2. Masher – the stomach churns the food ingested and helps to break any lumps into small pieces.
3. Acid wash – the stomach produces concentrated hydrochloric acid. This acid has two effects on the food that we ingest, by;
   1. helping to break down some substances
   2. killing many of the harmful microbes that may have hitched a ride with food and drink
4. Chemical factory – the stomach secretes a few compounds that aid the digestive process:
   1. pepsinogen which is convert into pepsin by stomach acid which then begins the breakdown of proteins
   2. gastric lipase which helps to break down fats
   3. intrinsic factor which binds with Vitamin B12 to be absorbed into the bloodstream as it passed through the small intestine
   4. gastrin which stimulates
      1. churning by the stomach wall
      2. the opening of the pyloric sphincter to allow food to pass into the small intestine
      3. the release of pancreatic juice from the pancreas and bile from the gall bladder
5. Absorption pit – the stomach contributes to the absorption of amino acids, and a few common chemicals such as aspirin, caffeine and ethanol.
6. Non-return valve – the oesophageal and pyloric sphincters help to stop the contents of your stomach and small intestine from revisiting your mouth. For most, this usually only happens when you must have had “a bad ice cube” in your drink, but there are many who suffer from chronic indigestion and acid reflux on a daily basis.

So how does a body cope without these functions? Let’s go through them one by one from my perspective.

1. Holding bay – this is now an operator function to be managed through procedure rather than an automated capability. That is, I now have to regulate my food intake so that I don’t overwhelm my gut. At first, it was a case of essentially grazing through the day – eating very small amounts in about 8 mini-meals every day. As time passed, my body has adapted. I now eat about 250 ml of Bircher muesli for breakfast, snack on trail mix fairly continuously through to lunchtime with a mandarin thrown in at morning tea, a toasted sandwich for lunch, more snacking on trail mix or nut bars through the afternoon with a tangelo for afternoon tea, a smallish dinner with no dessert. I have leant to avoid eating after dinner.
2. Masher – my teeth are now completely responsible for this function. Consequently, I have to concentrate on munching everything down to a paste before swallowing – it is oh so easy to fall back into old habits, but that causes grief further down the (intestinal) tract.
3. Acid wash – hmmm, no fallback plan here. What the heck, I am sure that it was over-rated anyway. Interestingly enough, I have been lucky to avoid symptoms that come anywhere near that of food poisoning. Let’s hope that my luck holds up.
4. Chemical factory – hmmm, no real fallback plan here either. Well, gastrin is obviously redundant now. But as for the others, I manage to get by without – well “mostly” that is. Unfortunately, B12 is required for the production of red blood cells. So the absence of intrinsic factor results in anaemia, which presents as weakness and fatigue. The solution here is that I now give myself a dose of B12 every 3 months by injection into my thigh muscle. Yes, I do it myself now – if I can inject my cows with vaccines, then I can inject myself with B12. And it is only 1 ml so nothing to whinge about.
5. Absorption pit – the stomach is not the ideal place for absorption of chemicals because of its relatively small surface area and, strangely enough, its high acidity. Now in the case of absorption of alcohol is concerned, the stomach only absorbs up to about 20% of alcohol consumed and the rest (80%) is absorbed in the small intestine. Now that I don’t have a stomach, the absorption by the small intestine happens quickly, really quickly. I now feel the effects of alcohol within about 5 minutes of consumption. That is, I feel its effect before I am even half-way through my first drink. Talk about a cheap drunk! But then again, my liver gets to process it quicker and so the effects don’t last long.
6. Non return valve – surprisingly enough, I don’t suffer from reflux nearly as much as I thought that I would. That is not to say that it doesn’t happen, or that it is a non-event when it does. It usually hits me if I have over-eaten or eaten the wrong things, of which there are only a few (see my new Rules For Eating below). Now that I am usually fairly careful about what I eat and when, but when indigestion happens, it tends to be at about 2:30 in the morning. It is hard to describe the symptoms, but I wake up with a burning sensation at the back of my uvula (the dingle-dangle at the back of your mouth) and an “uneasy” feeling at the back of my pharynx and down the core of my chest. Sometimes I get a bonus of a bubble of bile that geyzer’s up my oesophagus and explodes in my mouth. Not actually the taste sensation that leaves you longing for more.

Consequently, I have had to work out a few rules for eating and drinking.

• Eat for energy, then for protein, and then anything else
  Strictly speaking, this is a rule that was set by my oncologist. He told me that I need to keep my nutrition and weight up. I refer to this as my “seafood-like diet” – if I see food that I like then I eat it. I don’t avoid sweet foods (other than the “no sweets after dinner” rule), but I don’t add white sugar to anything that I eat or drink. I have grown to enjoy honey in my tea (I don’t drink coffee).
• Snack often
  In conjunction with the rule above, I snack on a home-made trail mix (ie, a mix of nuts, soy snacks, rice snacks, sultanas and dried cranberries) or nut bars regularly throughout the day. Through this approach I have managed to get my weight up over the past year from about 69 kg to 73 kg (I am 183 cm tall so that give me a BMI of 21.8 which is right in the middle of the “healthy” range – booyah!).
• Eat small meals
  Now I was brought up to eat everything that was put on my plate. That minimised waste, but now I don’t have a stomach to fit in a regular sized portion. If I do over-eat, it causes significant discomfort. I can manage up to about 350 ml of food at a single sitting, depending on how fast I eat. So if I get served a largish (for me) meal, I now take it slowly and/or attempt it in two goes. That is, eat nearly my fill in the first go, leave the rest for about 30 minutes and then attempt the rest – it is usually cold by this stage. If I go to a restaurant, I generally order a starter for a main meal so that I don’t make the mistake of over-doing it.
• No raw onion or garlic
  This includes spring onion which is often used as a garnish on Asian meals. Something in these causes me significant grief within about 15 minutes of consumption. It feels like there is a storm raging in my gut almost to the point of intestinal spasms. The effect can last for several hours. I usually try to get through this by going for a walk, but that is more to distract me because it doesn’t really help in any way. Mind you, I have absolutely no problem at all if the onion is cooked.
• No drinks with or after a meal
  Fluid passes through intestines much faster than ‘solid’ foods. If I eat and then have a drink, the drink sits on top of the food and this is like over-eating. So I can have a drink before dinner, but I need to give it a little time to get a head start before the start of the main event.
• If served chips, eat them first
  I have noticed that if I eat a meal that includes hot potato chips (French fries), then eating them last has almost the same effect as eating raw onion. I tend to think that the reaction is to the high levels of fat and, probably more significantly, the sugars produced as the potato starts to break down in my gut. The issue with the fat content is also backed up by the similar reaction that I get from buttered bread and from pork belly – fine in small quantities but not as the major constituent of a meal.
• No sweets after dinner
  If I have sweet food or a sugary drink after dinner, I can bank on waking up at 2:30 am with my form of indigestion. Strange that it takes over 6 hours to have its effect, but that’s the way it is. The only ‘fix’ for this is munching on 6 or so cracker biscuits and then putting a couple of drops of DigestZen (essential oils) under my tongue. This usually settles my gut enough for me to get back to sleep within half an hour or so; otherwise I will be battling it for hours. But there is another option here – have dessert before dinner.

And just to finish off this monologue, a couple of savoury tricks that I can perform even though I can’t work out how. Firstly, even though I don’t have an oesophageal sphincter, I tend to burp – and quite frequently at that. And I can even let out a rather large belch every now and then, but not at will. And the other thing is that, despite not having that huge muscular pump called a stomach, I can actually vomit – nothing like with the force that some of us have come to experience through our wayward lives, but the unmistakenly familiar abdominal contractions and the nasty after-taste are there all the same. Bizarre!

Well that brings me to the end of this exposé into life without a stomach. Now remember that this is my reality, and, as the doctors keep telling me, “everyone is different”. So don’t assume that this is a standard aftermath of a total gastrectomy. But perhaps it sheds some light on what might be in store further down the line for those who are faced with this daunting proposition.

I hope that you have found this interesting and even a little bit entertaining. Let me know, one way or the other. I'm also more than happy to field any questions that you might have.

Best wishes and big hugs to you all,

Rick

[sch]

Thanks Rick.  This provides a real wealth of information on your experience of life without a stomach and I imagine would be of great assistance to anyone else facing the same surgery.

-s

[Budgie]

Hi Rick,

That's fabulous information & was very entertaining.  I think the human body is a phenomenal machine, & it's amazing what you can get used to. 

 Good luck with everything.

Budgie 

[Stonechairshelf]

Well said. Having my total gastrectomy on 13 September. I have your words imprinted in my brain