Am I just fussy? Is that why the NHS always struggles to feed me?
I admit I’m a nightmare date or dinner guest: I’m lactose intolerant and have an ostomy bag.
In fact I’m probably every waiter’s worst nightmare: some noticeably roll their eyes when they hear me whisper the dreaded words – I’m lactose intolerant, is that going to be a problem?
But restaurants have adapted, with their allergy menus, and are mostly excellent – so why not the NHS where my intolerance and Ulcerative Colitis was, after all, diagnosed?
When I’m well I eat a diet which would shock any stoma nurse – I live off wilted spinach; rocket; veggie sausages; all types of fish and mountains of avocado – apart from a bit of an addiction to jelly sweets (and no longer diet coke) and white wine, I’m a bit of a health nut.
I avoid sweetcorn, nuts, coconut (less recently learned), peas, bean sprouts, sprouts etc and anything not really chopped up like the plague – I have not eaten a curry in over 14 years after it being a smell that made me literally vomit on my first hospitalization for ulcerative colitis (it has stayed with me).
But when I’m not having a good day and my ostomy is playing up fibre is totally off the menu – even the skin on a jacket potato and a rouge mushroom can cause a blockage and make me throw up.
So, today my last blog post on food in hospitals ended up on the Mirror and Wales Online.
As a journalist I am used to writing the news – not being the news (it has happened once or twice after I had a right go about claims junk food caused Crohn’s disease).
I have come under some criticism for what I said about the food I was presented with – or not presented with – in the Heath, but mostly the article has sparked discussion about people’s experiences with IBD and/or stomas and hospital food which can only be a good thing.
Some of the stories people have shared have been frankly shocking – and to me it is obvious something should be done both in England and Wales to introduce standards and to help the hard-working catering staff understand intolerance and patients’ needs.
In the next few days I am hoping that the Welsh Assembly will approve my petition calling on the Welsh Government to set Wales-wide standards for hospital food.
I want them to look at the amount of food thrown away, introducing menus, making sure patients are fed the right food based on their individual care, and give staff support and training.
Health is devolved in Wales – it is the responsibility of the Welsh Government – and I believe nutrition needs to be looked at. Looking at the 250 plus comments on Crohn’s and Colitis UK’s website a lot of people agree, and I’m not on my own.
But while I’ve got your attention I want to address a few things that the story misses out.
I’m not still in hospital
Firstly I had ulcerative colitis for 14 years – was in and out of hospital most of my teenage and young adult life so far, and led a life mostly ruled by bathrooms until I had my surgery when I was 25.
I have an ostomy and it is permanent. I had my first operation to form Winnie (my stoma) over two years ago, and then, due to complications with the disease still being in my rectal stump, had her made permanent (my backside removed and sewn up last year).
For the past year I’ve been the fittest and healthiest in my entire life; I’ve done things I never expected and really embraced my life – it has been a miracle.
The out of the blue I feel extremely ill, with excruciating pain at the start of October and that’s when I was hospitalised twice without warning and kept in.
They didn’t know what was happening to me – i was put on loads of fluids, and antibiotics, which made me even sicker as they shouldn’t have been taken on an empty stomach. The dietician and stoma nurse kept telling me to eat, and were totally frustrated I wasn’t getting the right food to sort my output out.
I didn’t know I was going in, I live on my own, my family are in Lancashire, and frankly the majority of my colleges and friends wouldn’t know what to feed me if they tried – people just don’t get lactose intolerance.
This is not the first time this has happened; I’ve had varying experiences in Chester, and been offered bowls of milk for breakfast, stir fry and salad (not long after my operation) and live off dry tuna sandwiches for weeks (as that’s all they could think of) – but in England they did have menus so some time they got it right and it was excellent.
However in the Heath there were no menus, the ward had its own kitchen, what was on the trolley was what you got – if you couldn’t have any of it, well that was that – the dietician insisted to the catering staff that I was allowed to ask for cereal if I couldn’t eat any of it.
People have said why didn’t I go to the shop – when I wasn’t about to faint, or the staff were frightened I would because of my low blood pressure, I did go to the shop. However it was a WH Smith and as someone with lactose intolerance, and at the time on low res, I could only eat crisps and sweets – which obviously was pretty much pointless.
I did continuously tell people I was lactose intolerant, i offered to help, and pleaded to go on the Ensure drinks (which I eventually got), and kept telling the dietician I was scared of loosing weight (which falls off me in hospital) but unfortunately they kept running out.
Staff did their best
In my job I have been accused of “single handily trying to destroy the Welsh NHS” – I trust you I am not.
I had the greatest sympathy for the catering staff at the Heath. It was the system that failed not them.
The catering guy was scared of coming to my bed by the time I left; he would creep over to me like I was going to pounce down his throat or perhaps try to eat him.
He always looked crestfallen at every bed who couldn’t eat the food, due to having had surgery, being on a low res diet, on liquid only – or frankly just not liking the look of it.
I felt sorry for him, even more so when he brought out the allergy sheet and didn’t understand it, insisting I could have the cheesy pasta, followed by cheesecake with ice cream – I obviously disagreed and didn’t eat it.
It’s time for action – but positive not negative
What I want to see is some constructive action.
I’m not looking to be fed with a gold-plated spoon, with British Bake Off style cakes, and caviar – just diet to be treated the same as drugs, fluid and put into the package of basic care.
nutrition is a key part of healing, but offering someone who has just had stoma surgery lentil soup, and a tuna sweetcorn sandwich or nothing as their first meal isn’t right.
Yes she had advice straight after her operation, but at the end of the day once you have had the operation it is an experiment and you should start slow – not with something that may just cause you pain and agony.
Please share your experiences
So I would like to know about your experiences of hospital food – yes even the really good ones.
Let’s try and find out what’s going wrong and where it is going wrong.
And, why am I doing this, well I want my experience to mean something apart from loosing all my hard earned weight, it’s pointless me just sitting back and letting the next lactose intolerant or ostomate go through the same thing.
Oh, and next time I want to eat!