Post-surgical nutritional deficiencies and testing

This is such a massive topic, so bear with me.

Despite the modern pressure to go vegetarian or vegan, the brains of our ancesters would not have increased to the size and complexity that they are if we continued on the same diet as gorillas. We have evolved to be omnivores and there is evidence to suggest fat extracted from brains and marrow contributed to a nutrient rich diet. We are unlikely to get the digestive system of ruminants in the not too distant future. Even Tibetan monks in the Himalayans eat the occasional yak.

We have the acid containing stomach like carnivores to break down meat and protein; a pancreas and liver to break down carbs and fats, a long small bowel to absorb nutrients and a large bowel to absorb water and process fibre. If it all works, it is a finely tuned engine.  Clearly oesophageal cancer patients have this lovely dream-like scenario blown clean out of the water when they get diagnosed, leaving them with a whole host of new stuff to deal with. As we eat smaller meals, everything we eat has to count in terms of calories and nutrition. Unless you know what you are doing, this is not the time to stop eating meat. 

The evidence

It is not surprising that after oesophagectomy (partial gastrectomy), nutritional status can go into decline due to stomach reduction or removal altogether. A number of patients are not warned about deficiencies. Is this because some dieticians are in denial that deficiencies occur or are they only involved for such a short period of time, they never get chance to see the scale of the problem? Whatever the reason, some forward thinking dieticians in London have done two pieces of work and admit that they still do not know how best to address longer-term deficiencies in post-oesophagectomy patients.

This enlightening audit by Alice Kidd in 2014 is well worth a read. In addition in 2017, a team at Imperial College London published this paper on the same subject. They report that two thirds of oesophagectomy patients get deficiencies in ferritin, B12, vitamin D and zinc and recommend regular screening but they do not specify a frequency.

I feel very strongly about the empowerment of patients over their nutrition, so much so that I am going to stick my neck out here and say three things:-

(i) be proactive and get to know your blood results and what is normal for you, preferably before any treatment starts

(ii) do not rely on dieticians or specialist nurses to remember to test you. They will only do it when clinical symptoms arise and by then you will be feeling unwell.

(iii) ask for tests regularly or get them done privately.

OK – let’s break this down.

Baseline blood tests

I have already recommended getting a baseline blood test in an earlier post on preparing for surgery.  Ideally get one done before chemotherapy starts. The key values as shown in the papers above are iron, ferritin, calcium, magnesium, vitamin D and vitamin B12. You could throw in a fasted cholesterol and also a HbA1c plus liver and kidney function and bone profile for good measure. 

Bloods are done prior to each chemo appointment so ask for the results, ask questions and keep an eye on any changes.  Any doctor or health professional who can look you in the eye and tell you, you might die from sepsis or on the operating table, should not have any problem sharing your blood results with you or what they mean. Most of the time, the lab will flag up any values that fall outside the ranges, whether it be low, high or just on the cusp. It is also worth noting that trends or obvious declines or increases are what to watch not the odd fluctuation. This is why a baseline is good as it shows what is normal for you to start with. The caveat for this is if the illness is already causing problems with swallowing and eating in general and levels of certain vitamins and minerals like iron have dropped.

What do the numbers look like?

Below is a table showing each parameter, units and range to give an overall feel for what you are looking at. It is worth noting that different hospital and indeed GP labs have slightly different ranges but we are only talking very small amounts. It is the lower and upper end of the scales you need to keep an eye on. I will provide links to valuable sources of information but there is so much pseudoscience on the internet – suffice it to say that if these are all in range – you can say that you are biochemically sound even if you feel a bit off kilter.

ParameterValueRange MeaningSource
Vitamin D64nmol/L (50-200)AdequateNHS Labs
Vitamin B12612ng/L (180-910)NormalNHS Labs
Folate8ng/mL (>5.4)NormalNHS Labs
Iron17umol/L (5-33)NormalNHS Labs
Ferritin189ug/L (10*-291)NormalNHS Labs
Calcium2.4mmol/L (2.2-2.6)NormalNHS Labs
HbA1c37mmol/mol (<42)NormalNHS Labs

Going forward

I will endeavour to get my bloods done every 6-12 months. If you are in decent shape before surgery and can eat relatively well after or have a jej feeding tube, your nutritional status should be OK for the first few months. It may go into slight decline when you start on real food. This can be due to the reduced volume of food, insuffient enzymes to break macronutrients down or reduced acid due to reduced stomach capacity or acid reducing medication like omeprazole.

B12 needs something called intrinsic factor in the stomach to be absorbed from food – so without exception, all gastrectomy patients will need lifelong B12 injections and probably iron supplementation. Iron is problematic as the body does not absorb it too well anyway. Try to eat iron rich foods where possible alongside something with vitamin C to help absorption. Ferritin levels represent stored iron and if these remain optimal you should be OK. In the table above it says that over 10 is OK for ferritin but there is some anectdotal evidence to suggest that below 20 and your hair may start to suffer. It is also worth noting that one in 200 people have a gene for haemochromatosis which is the over storage of iron in the blood so it is a good idea to have iron levels checked as unnecessary oversupplementation can also be extremely harmful.

Partial gastrectomy patients as stated above have been shown to need regular B12 and iron. You could try eating a bowl of Ready Brek each day which is fortified with B12, iron and folate. I do not know if this is enough to keep deficiencies at bay but do not wait for their values to bottom out, as by then you will feel unwell and you already have enough to deal with.

Vitamin D is important for the uptake of calcium into the bones. Being in full sunshine for 20 minutes a day helps to make vitamin D in the skin or you can absorb it from food.

Private testing

If your health team or GP are not forthcoming on the testing, exercise your consumer rights and buy your own. Vitamin D testing can be done cheaply and simply via a prick test.

For general health tests, Micki Rose has a great service and is very knowledgable over a whole wealth of tests. I have used Micki’s site a few times to order tests.

There is a new service on the market called Thriva.co – I have tried using them but the amount of blood required is impossible for me to extract via a simple prick test. You may have better luck.

These are just ideas – the best people to do your tests are your GP or at the hospital at the time of a follow up.

Advice for those who are not natural positive thinkers

Serial optimists need not bother reading this post as they are naturally wired to think positively. Some of us however, fall into the realist or pessimist/half empty category.

If I had a fiver for everytime I was told to think positively this year (post-Brexit permitting), I could afford to go on a decent European city break. It is an easy comment to make, often by former cancer patients, as it worked for them. However it paints a false picture of real life and is clearly impossible to achieve every day.

You rarely, if at all, get told to think positively by a health professional, particularly a medic. These people have seen and know too much to even dare. If you could read the mind of the doctor in front of you, what they would secretly be thinking is “Look I’ll do my best, the odds seem good but who the hell really knows, medicine is not an exact science”.

What’s it all about?

In my opinion, saying ‘think positive’ to a newly diagnosed cancer patient is the equivalent of saying ‘Cheer up’ to a person with depression. Easy to say when you are in the light but is meaningless when you are in a very dark place and lack the resources and ability to find the lightswitch.

Yes, I understand the thinking behind cognitive behavioural therapy (CBT) but when I hear ‘think positive’ it makes what is left of my stomach turn over. It can send my brain into a crisis situation where it was constantly thinking WTF!

Dealing with cancer is hard enough but to know how to even approach putting a positive spin on the volume of thoughts, you’ve got me there, I give in. Often with CBT I end up trying to hoodwink myself and that in itself is ridiculous – the thought has to make sense and needs the evidence to back it up. In the end, enough time goes by after the ‘think positive’ comment is made for me to forget about it and be distracted by something else and that is my point. Distraction can and does work as the brain can only really deal with one thing at a time.

Do not Feel Under pressure to see the glass half full

If you think you can think positively and want to, then go for it, that is not what I am saying. I would turn on that switch if I could. My mind likes to do things differently.

What is the alternative?

There is clearly no benefit in catastrophising minute after minute, hour after hour about what might happen or indeed what is going to happen. This leaves you with no power at all and is horrible and extremely draining.  Is it better to be in blissful optimistic ignorance though?  There is a balance.

If you must worry – then put aside a set period of time (30 minutes) to let your thoughts run wild but then you must stop and start doing something else – anything to keep that busy mind occupied. Worries do come and go as you move through treatment so the initial ones should go completely or change into something else. Thankfully worries are not set in stone.

Mind managing strategies

Here are a few helpful things, in no particular order, to help manage those ‘what if’ convos in your head.

1. Get and stay informed: If you are someone who likes to know beforehand – finding out what you are dealing with is by far the best thing you can do to rein in your worries. Write down your questions and ask your health professionals for the answers. Get in touch with other patients and ask them about their experiences. However do the latter with caution – some people have had a rougher time than others and this could have the opposite effect.

2. Learn something new: This is a pure, hard core distraction technique. You will probably end up being well versed with your cancer but learning something new (not connected with health) keeps the brain stimulated even though it may be a struggle to get started. Avoid the big or unachievable like an academic course – daily use of Apps like duolingo for languages are fab. I learned to draw this year and it really helped me visualise my thoughts. I can not recommend this enough. If you don’t fancy drawing, journaling is shown to be good and scoring yourself out of 10 everyday is also helpful. Practicing mindfulness is also a good way to try to settle down your mind. The Headspace app is good as you can build up your time starting with only a few minutes.

3. Family and friends: Again support from real humans is an incredibly important part of getting through difficult times. Hearing about what a fab time others are having and their exotic holidays can be hard but interaction with others can also take your mind off your own situation.

4. Video games: My saving grace this year has been a video game called Criminal Case. Research studies have shown that playing video games can relieve chronic pain (google video games and chronic pain if you don’t believe me). This worked for me when my nerve pain was at its worse. Other games I played were Luminosity brain training and Spider Solitaire.

5. Read the books you have always wanted to read and binge watch those TV box sets: I struggled with the attention to read at times but it is something I love and getting lost in a book is magical. I have managed to read quite a few books this year. Binge watching a number of series is something we rarely do but have done so this year.  Notable ones that kept us busy were Lewis, Bosch and Rev.

6. Get out in the open for a stroll: Moving about post-op is difficult as the energy may not be there, you maybe in pain and it can be a real effort generally, however getting out even for a short constitutional can make all the difference. Besides it is hard to really worry and walk at the same time. A walk clears your head and makes you feel you have achieved something. You can reward yourself with an afternoon nap when you are done.

7. Get out and see something new: Also not rocket science but if you want to see a show or visit somewhere and you have the energy and the cash – get on and do it. Anything to get yourself out of the house. Maggies centres or centres like Beechwood do extremely valuable work. Having a couple of treatments or counselling sessions booked in gives you a valuable anchor to your week and something to look forward to. Therapists at the above places have met numerous cancer patients and have more creative and sensitive ways of expressing themselves.

In conclusion then, the basis of the above is essentially filling your time with more productive stuff than thinking about death and disaster. Mark Twain summed it up by saying “I’ve had a lot of worries in my life, most of which never happened.” Give that man a coconut.

 

reflux volcano

Reflux

In search of the Holy Grail of Antacids

I have not found a solution to reflux yet and trying has been a bit of a torturous journey. Heartburn was my presenting problem. I had never suffered before and thought my stomach was the least problematic part of my vintage 1960s anatomy. How wrong I was.

Omeprazole

Despite my hatred of medication, after diagnosis I relented and went on omeprazole, a proton pump inhibitor (PPI). This was 20mg once a day and it worked for a while but the heartburn returned during chemotherapy so I upped the dose to 20mg x two times a day and stayed on this dose all through surgery. I tolerated the drug pretty well except for the fact I still had occasional heartburn.

The vagus nerve is responsible for acid production and as this is cut during surgery, one would hope that acid reflux would be a thing of the past or in my case, the not too distant past. I continued on the omeprazole but was aware of a sensitivity in my oesophagus. In addition, I had the post-oesophagectomy cough which could get quite violent at times.

Lansoprazole

At around 3 months post-op, I mentioned the sensation to my GP who put me on lansoprazole, another PPI.  Again I tolerated the drug very well and the cough pretty much went away. However after about 2 months on lansoprazole, I developed colitis, which was consistent for 3 weeks. I took to the internet to find out the cause and from the medical literature, it was pretty clear that PPIs can induce something known as microscopic colitis in some patients – approx 15%. I needed to test whether it was the medication so it was with much trepidation that I decided to come off the lansoprazole cold turkey and see if it cleared up. It did. I braced myself for the acid rebound but it was not too bad and settled to a lower level within a couple of days. The cough came back a bit but not half as bad as in the post-op weeks.

Ranitidine

My GP then gave me ranitidine (zantac) assuring me that it shouldn’t cause problems. This is where I am up to today. Ranitidine gives me dullish headaches and makes me feel quite sleepy in the afternoon. It also makes me feel a little dizzy and a bit vague so my next change will be either back to omeprazole or esomprazole (Nexium). However there is no guarantee that either of these will induce colitis again.

What really helps reflux
At night

I am lucky in some respect as I do not have any problems at night and sleep relatively upright as I have described in the sleep post. Apart from sleeping upright two things help at night

(i) Gaviscon Advance: Gaviscon Advance LiquidA large slug of this white gelatinous gloop keeps the acid from creeping up during the night.  This comes in peppermint and aniseed flavours. Why oh why they have to flavour it at all is beyond me – I’d take it if it was flavourless and still worked. The secret to Gaviscon Advance is the whacking 1000mg dose of alginate which mixes with acid to form a raft over the stomach contents and protect the oesophagus from rising acid.

(ii) Food:  Yes you heard right – having something in my stomach seems to really help – not just at night but all through the day. Obviously the choice of food matters – so a vindaloo is not ideal – instead a small, lightish carby snack that is easy to digest should be fine.

During the day

As well as having food in the stomach, avoiding bending after eating is obviously a good way of preventing reflux. Sometimes it is necessary to pick something up off the floor, eg what if you dropped your keys. For scenarios such as this I got a helping hand and it is fantastic.  It picks up coins easily as there is a magnet at the end. Very good for picking up random clothing and loading in the washing machine. I can also recommend a long handled hoover like any of the Dyson cordless varieties as they are light and you can stand fairly upright whilst hoovering.

 

When to eat and drink

When you can not drink with meals – it is quite a challenge keeping hydrated throughout the day. In the weeks after surgery, I was so focused on eating, I forgot to drink anything in the day. I have still not mastered this but I’m getting there. In fact I probably break all the rules when it comes to eating and drinking at the wrong time but it seems to work OK for now.

Wake up – drink at least 500-800 ml of water
8-9.30 – breakfast
10-11.30 – drink two decent sized cups of tea
11.30 – banana or morning snack
1.30 – lunch (drink water before lunch)
3.30-4.30 – afternoon snack
6.30 – dinner (drink before dinner)
8.30-9.30 – supper (usually small bowl of muesli)
bedtime – at least 500 mls of water

Sometimes I may be out and about and will grab a coffee – can be morning or afternoon.

Surprisingly I rarely get reflux at night through drinking and it doesn’t often disturb my sleep having to go to the loo.

 

 

 

 

Cafe serving small portions

How to enjoy eating out

Eating out will friends and family is one of life’s pleasures. It will never be quite the same after surgery, however it is possible and not just on special occasions.

In fact the good thing about eating out after oesophagectomy is your next meal is never very far away, so you can fit in with other people relatively easily.

The first time I ate in a restaurant after surgery, I felt very self-conscious and got upset.  However it taught me that I must get over myself and not feel like that and accept this is me now and others will have to do the same. This was half the battle and I never looked back. I am now so indoctrinated with my new style of eating, when I look at the amount my friends and family have on their plates, I can no longer imagine myself eating that quantity of food.

These days, restaurant and cafe owners are used to people making all kinds of requests over food choices, allergies and free from requirements so there is no reason for anyone to feel embarrassed or awkward. Besides post-oesophagectomy patients fall under the Disability Discrimination Act so the law is on our side if someone is funny about asking for a small portion or wanting to charge an adult full price for a half portion.  The Oesophageal Patients Association have a downloadable card you can flash at cafe and restaurant staff to say you can only eat small portions.

Here are my top tips for eating out.

1. Avoid sniffy eateries

The worst places to eat are the ones that get sniffy about only having a starter or an adult asking for a child’s portion so maybe avoid if you can. A fellow patient told me that when asked for a child’s portion, it came on a child’s plate, which they found really humiliating. If an eatery does this kind of thing, do not go back. I find these have been chain pub restaurants or places that are not overly clued up on food allergies or offer any gluten/dairy free/vegan options.

2. Quantity

If you can, choose somewhere with a good choice of starters and sides as you can combine both of these. Menus are often available to view online beforehand. If others are having starters, then either order one and eat it with theirs or ask for it to be brought with the mains.  Waiting for the mains is no big deal as we eat more slowly so are likely to finish at the same time as those with normal portions. It is always worth asking whether a starter-sized portion of a main is available. Some Italian restaurants do this. Some places do smaller portions, which is great but to be honest, even a child’s or older person’s portion can be too much.  The perfect places to try are tapas bars as all the portions are small. If the meal is a long affair, enough time may have elapsed for your starter to have shuffled down enough to have room for a coffee/tea or a small amount of dessert.

3. Where and share

Cafes in supermarkets, large garden centres, National Trust properties or places with a communal eating areas like Altrincham Market are great.  The people serving or selling the food do not know the exact number of people in your party or who is eating or what. Ask for a small, clean plate and decant any excess food off your plate to ensure you are not overfaced. Equally, and I do this alot, share a main course. People who have todders do this all the time. Provided you are sharing only food bought at that establishment and not your own, there should be no issue.

As mentioned above, tapas bars are perfect for sharing. The Fumo chain do Italian type tapas called cicchetti where you can get one or two dishes to share and the food is delicious.

4. Ask for a doggy bag

It takes a bit of front to ask but I have done this a few times now and it has worked so well.

Pizza Express are very amenable to doggy bags for mains and desserts as are Toby carveries. I had an ordinary sized carvery for lunch and asked for a take out for later. I’ve not tried asking for a doggy bag in a higher class restaurant but to be honest, their portions tend to be on the smaller side so there is often no need.

5. Make time

When eating out, it is always a good idea to ensure you don’t have to rush off anywhere after eating. This gives you time to enjoy the food and that is has settled safely before you leave and there are no impending signs of dumping.

6. Quality

It goes without saying that you should choose somewhere with a good hygiene rating and decent food on offer. As we have to eat smaller sizes, eat something that tastes good and has been cooked to good standards. As we are more susceptible to stomach upsets, it is not worth taking the risk if something does not taste or look cooked or quite right. If in doubt, it is fine to leave it.