Day 4: Working with crohn’s and colitis #7days0fIBD

Why are people with IBD drawn to stressful jobs?

It’s true, in all my years in and out of hospital I don’t think I’ve ever come across anyone who has a chronic condition (and is in work) who has a job which doesn’t go hand in hand with massive amounts of stress.

I’m a political reporter – enough said.

While everyone who has Crohn’s or Colitis has different triggers for their illness, the most common exasperator seems to be stress, but we seem to be drawn to jobs that have the highest levels of pressure possible.

I have always found I’m in a catch 22 when it comes to working with my illness: I’m a total work-a-holic and I both thrive under pressure and crumble.

Over the years I’ve pushed myself to the limit when it comes to my job, it’s almost been like I’ve been trying to make up for the fact that I’ve been so ill – like I think I’ve got something to prove.

I’ve filed copy from hospital beds and taken my work to the toilet when things have got bad – and I’ve worked all night when the pain has made it impossible to sleep.

The fatigue is crippling and that’s what hits you the most.

But I’ve had my days where work has been impossible, and I now realise that my point proving was hugely detrimental to both my health, probably making me iller than ever, and ultimatly my sanity.

Now as someone who is pretty much well all the time (thanks to my operation) I look back on how I was with horror.

Working around the clock was my way of trying to block out my illness, it was in a way a distraction. But in reality every day I worked until 1am, or stayed up reading reports all night pushed me closer towards the surgeons knife.

It is easy to look back and think I was stupid, but at the end of the day I also have to admit that I love being a journalist, and that’s not an easy job to do when you’re rushing to the loo all the time and in crohnic pain.

I have the upmost respect and admiration for anyone who can hold down a job while living in chronic pain – and I also get why people can’t work.

I was only ever off sick when I simply couldn’t move: when things got really bad my editor sent me home for falling asleep at my desk.

Sometimes I wish I’d slowed down a bit and realised it was ok to ring up work, give in and have a sick day – but I guess I was too stubborn for that.

Day 3: A magical 28th birthday #7daysofIBD #7daysofstoma

I made it to the grand old age of 28 – it feels like an achievement.

I was after all a premature baby, who was born fighting.

Teamed with my Ulcerative Colitis it has taken a giant team of very dedicated people and a fantastic amount of love and patience from my family to get me this far.

I hope I’m not wasting the gift I’ve been given.

Yesterday was my birthday and I had the day off, accompanied by a stinking hangover. But despite the big headache I had a truly lovely day, deliriously pain free and felt very happy and loved indeed.

My birthdays are always a quiet affair. I like the simple things: a good meal, some wine, a lie in, and no chores all day.

Oh and fab gifts, loads of best wishes messages and some unexpected cards too.

I also ate the thing I try to avoid, as it blows me up like a whale – bread.

Chris spoilt me with some really gorgeous flowers, and we spent the day freezing and feeling sick from stuffing our faces with sweets wandering around the Christmas market stalls in Cardiff, with me getting soaked as someone wasn’t too great at holding a brolly.

I even found a vegan Welsh cake – which might not have helped with my twitchy tummy today.

It was all polished off with my favourite – not Winnie’s favourite – meal at Bills’, spinach, bacon and avocado salad and sweet potato fries….mmmm.

Here’s to many more healthy, happy and pain free birthdays for decades to come.

Last chance to sign better Welsh NHS hospital food petition – especially for those with IBD, stomas and intolerances

There are just hours left to help me make put the case for better food standards in hospitals to the Welsh Government.

The petition on the Welsh Assembly website closes tomorrow morning and I need all of your help to get the maximum impact.

The petition is calling for better food standards for all.

But it also calls for action to make sure the right diets and choices are given for those with bowel conditions including Crohn’s Disease and Ulcerative Colitis, ostomy bags, and for those with allergies and special diets.

This includes vegetarians, vegans, lactose intolerant, gluten free and celiacs.

If you want to see the Welsh Government take action, look at standards and hopefully improve the food we get served on hospital wards please sign the petition.

I would love it if you call all share it and sign it – the more people who put their name to this the bigger impact it will have.

Please send it to people you know who may have IBD or special diets and have struggled with nutrition in hospital.

Here is the petition, please sign it and help my campaign.

https://www.assembly.wales/en/gethome/e-petitions/Pages/petitiondetail.aspx?PetitionID=887

 

 

 

Day 2: Free wine that’s all I have to say on the matter #7daysofIBD #7daysofstoma

Me at the office

I’ll keep this short, mostly because I’ve got a stinking hangover.

It’s day three, but I’m writing about day 2 of my blog a day for IBD awareness week, and I’m a year older.

All I can say is that I can’t handle a free bar – that’s not really to do with my IBD, more that I am simply not good with wine.

I’ve known that I’m a lightweight for years, but not drinking and journalism don’t go hand in hand, oh and I do love a good glass of cold white wine.

I want to put one thing on the record: just because I have Ulcerative Colitis it doesn’t mean I can’t have a good time.

I’m allowed to drink, eat the occasional bag of chips and let my hair down – I just have to be a little bit more careful than the average joe as I can get into sticky situations a lot more quickly.

To be honest with you that’s not really down to my illness, it’s more that I’m tiny weeny and often forget I can’t drink a lot of wine despite my best efforts.

It was one of my editors that once told me: “Rach you eat like a tiny little bird – you should drink like one too”.

I ignored those words of wisdom – sometimes they come back to me and echo in my brain in a Yoda like way when I’m getting in my third large glass.

At times when I am ill I often cut out drinking all together. I can and have stopped drinking for months on end. Stopping the booze does help a fair amount, and it is nice to go weeks without waking up once with a head like cotton wool.

But we live and we learn.

Winnie is not a fan of cheap wine, she goes green and sickly looking, and often has a right paddy. To be honest the only time she ever chooses to leak is when I’m hungover and it is literally the last thing I want to deal with.

Anyway, today I’m 28, and I have woken up feeling it.

 

Day one – red, green and other weird coloured poop #7daysofIBD #7daysofstoma

Seeing red in your ostomy bag is a frightening experience.

Spotting blood where it isn’t meant to be is horrifying for anyone (if you’ve not experienced it I hope you never do), but after 14 years of Ulcerative Colitis seeing red is enough to make my world crumble.

It is the tipping point, the moment I have to stop kidding myself that the agonising pain will vanish (even though i know it never will) and the horrible realisation that I will have to drag myself to hospital.

When I say spotting blood it is more like a massacre – not that I want to frighten any of you.

Anyway that’s beside the point. For the past year I’ve lived without red in my stools – well until I eat something like tomato soup, and then I nearly always forget I’ve eaten it and freak out.

Some foods do weird and wonderful things to my stoma output and turn it bizarre colours which would startle any right minded person and have you running to the doctors whispering “why is my poop bright purple? What exotic disease have I got?”

You probably wouldn’t stop to think you might have eaten beetroot – but there again most people don’t examine their poo for weird qualities like people with IBD have drummed in them to do.

Today I forgot I’d eaten tomato soup, hence I had a little heart jumping moment (like when I see a large spider lurking in the bathroom) when I saw the bright red colour of my stoma bag contents.

As a now slightly seasoned ostomate I’ve taken to taking a little moment to think while I’m sat on the loo – I stop and say ‘Rach what have you eaten that might have caused this…’, before I allow myself to properly freak out that my illness is back or has morphed into Crohn’s disease.

It’s a good job I did – the memory of the tomato soup came flooding back and I visibly relaxed.

morning

gym

dinner

The first time my output went green I went mental…what the hell, what did it mean, I hadn’t even eaten anything green!

Green is pretty normal for me: I adore spinach even if my stoma does not.

But for most green is a sign that what you are eating simply isn’t being absorbed – it means you’re having too much fibre, or your food is going through you. This happens to me a lot, as I insist on eating the foods my digestive system doesn’t like, such as: rocket, spinach, cucumbers – which do from time to time cause me a lot of pain through blockages.

I remember being totally freaked out though the day my output went bright green – I mean pretty much luminous – a consequence of some very horrible cocktails the night before.

Bad colourings in cocktails have also led to slightly purple output, bright red and a slightly blue tint – always a really horrendous experience when you’re hungover and confused enough without thinking your dying.

In other news I went to the gym, got drenched posting letters and almost got lifted off my feet on the way home – thanks lovely Cardiff weather.

 

Every day is different #7daysofIBD #7daysofStoma

Like most things in life IBD isn’t easy, but unlike most things – annoying boyfriends, bad coffee, crap workloads, rude people, colds and bad breath – you can’t get rid of IBD.

Crohn’s and/or Ulcerative Colitis can’t be dumped, shrugged off, shifted with Night Nurse or left at the side of the road like an old sofa. They also can’t be killed, rather slightly dampened under a blanket of wonderful, but also debilitating, drugs and treatments.

Living with IBD is like riding a rollercoaster: you have days of highs and days of crushing lows.

Crohn’s and Colitis UK have launched a campaign called ‘every day is different’ – even now, after my surgery, I have to agree.

Every day really is different with Ulcerative Colitis. Every day is different living with a stoma. And, well, every day is different and unique simply being me.

Since my surgery the surprise bad days in my calendar haven’t come round nearly as often – they used to be too frequent, and looking back I have no idea how I even found the strength to brave the world on the many days I felt so ill it took every ounce of energy simply to lift my head, get out of bed and stumble to the toilet.

My ostomy has opened up a world for me and freed me from being attached to drips; rows of tiny red pills; staring at tiles in bathrooms in gyms, offices, boyfriend’s homes and, well, ant infested gastro wards.

I’m grateful for no longer having accidents waiting in traffic jams, racing home and in supermarket queues; being able to travel without being frightened of long car and train journeys; no longer spending sleep-deprvied nights curled up in pain on bathroom floors – oh and not spending all my holidays attached to a drip or waiting for an outpatient’s appointment.

But despite my life not being as unpredictable or frightening, every day with an ostomy can present a new, weird and often wondrous challenge.

Over two years since I first got Winnie (and a year since she was permanent) I’m still finding out things about her – such as her new found hate of cucumbers, and her inability to remain quiet or still in intimate and highly important moments.

Every day without the pain of Ulcerative Colitis is a wondrous treat, but I’ve started to realise it is a gift that I’m  simply not appreciating enough.

I used to put on a brave face and smile no matter what, even when I was in agonising pain and simply wanted to die. On the good days I felt deliriously happy (even if I was frightened by a flare just around the corner) – somewhere along the line I’ve forgotten to appreciate how good feeling well is.

My blog challenges and my adventures have stalled recently.

I’ve been wrapped up in work, moving to Wales, changing my life, and falling in love that I’ve forgotten why I started all this in the first place.

It started because I needed something to aim for. Back in the first weeks after my surgery when I could hardly walk, covered in dressings, and had two bags, I needed a goal and a dream – the adventures were it.

As I approach my 28th birthday I’ve realised I’m not going to manage all 101 – it was a ridiculous goal, especially since I don’t have a lot of money or even a car.

But as it’s Crohn’s and Colitis Awareness week from December 1-7, which happens to be the same week as my birthday (hold back on the cards guys), I’m going to share my days with you and start to reboot my adventures.

Starting tomorrow I will do a short little post (and a picture) every day to give you all a little insight into my life with an ostomy, to hopefully shed some light on some of the burning questions you might have about how it affects me.

And then, once that’s all wrapped up, I’m going to have a good look at these challenges and start to figure out just what I can achieve before the big 30.

Oh, and if you haven’t signed it yet, the Hospital Food Campaign Petition is still live, please spread the word and help make some changes to the Welsh NHS.

https://www.assembly.wales/en/gethome/e-petitions/Pages/petitiondetail.aspx?PetitionID=887

 

Welsh nurse of the year – a humbling and positive look at the NHS at last

Incredible night already very glamorous for nurse of the year @RCNWales pic.twitter.com/Vl0p2Drnzf

— Rachel Flint (@DailyPostRachel) November 19, 2015

This week I attended an event which was like a breath of fresh air.

In the midst of a seemingly never-ending barrage of bad news stories about the Welsh NHS, some of the most inspirational people I’ve ever met gathered under one roof to celebrate the unswerving dedication of nurses.

Stories of incredible achievement, undying compassion and normal people going over and above the call of duty to keep the Welsh NHS afloat dominated the evening.

If any evidence was needed that nursing is still a caring profession Thursday night’s Royal College of Nursing (Wales) award ceremony, granted it in bucket loads.

To be honest it was stunning, and a welcome break from the never ending scandals and problems I seem to spend my days both reading and writing about.

There was little doubt (or disagreement) from anyone the profession is overworked and overstretched, but this pressure hasn’t stopped nurses up and down Wales going over and above to make a real difference to people’s lives.

“When you are very tired and a patient says thank you – that is what drives you” @RCNWales pic.twitter.com/sd1wKqLTBA

— Rachel Flint (@DailyPostRachel) November 19, 2015

But a few things were said about how damaging politics can be for the NHS – a number of people raised concerns about political meddling and point scoring, something which they believe can only get worse in the run up to the election.

Despite this the positivity of the evening, in the face of constant negativity, was overwhelming.

People let their hair down, talked to each other about incredible achievements, and enjoyed a glittering ceremony with incredible food (yes even for me with my weird dietary requirements).

The politicians who where there – Welsh Secretary Stephen Crabb and Health Minister Mark Drakeford – spoke with pride about the achievements of the nurses and health professionals who’s dedication keeps the Welsh NHS alive and kicking.

And it was nice for me to share my experiences with the nurses, CEOs and health professionals – and to speak to those who are helping to save lives day in day out, and well thank them.

Welsh Sec Stephen Crabb speaks with pride about Wales’ nurses “you are the beating heart of the NHS”

A video posted by Rachel Flint (@rachelflintviews) on Nov 19, 2015 at 11:11am PST

 

Petition for better Welsh hospital food must now be looked at by Assembly #Crohns #IBD #ostomy

The Welsh Assembly will be looking at hospital food in Wales – as more than ten people have signed it.

I’m delighted, but to give it more weight I would love hundreds if not thousands of people to get involved and make sure our voice is not ignored.

Otherwise they could really dismiss it as my insane ramblings when I was starving and full of drugs.

I am hoping Crohn’s and Colitis UK, Ostomy Lifestyle, Campaign for Better Hospital Food (England), and allergy, vegan, vegetarian, lactose free, gluten free etc and health bloggers, campaigners and patients will get behind me.

Today I used my column in the Daily Post (in North Wales) to share my experiences with food in hospitals with my lactose intolerance, ulcerative colitis and having an ostomy bag.

Click here to read the column online:

I am hoping to hand in the petition alongside a bundle of people’s own experiences to the Assembly Members on the steps of the Senedd next month.

To do that I need your help.

The petition runs until December 4. I would love for anyone who has ever eaten in a Welsh hospital (or had a relative or friend who has) and wants to see improvements to sign the petition – the more people who sign it the better.

I think this will push the Welsh Government to seriously look at standards – if it is just my experience it could be easily dismissed as a party pooper and groaning fussy idiot after all.

I also can’t rock up with one sheet of A4 – that would be pathetic. I want to take a lorry to lift the petition into the arms of the waiting politician.

Please sign the petition here if you want to see changes.

Here is the link if you want to share it

https://www.assembly.wales/en/gethome/e-petitions/Pages/petitiondetail.aspx?PetitionID=887

Also please share your pictures, stories, experiences of hospital food in Wales – good, bad or indifferent.

I want to build up a picture, or a report, of evidence I can submit with the petition.

The more I have the better.

I need your help to do that.

Please tweet me @TheStomaBagLady or @DailyPostRachel. email me rsl.flint@googlemail.com or go to to my Facebook page and share your story

Alternatively fill in this form which will be sent to me.

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Your Welsh hospital food experience

Twitter address and area you live in

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Campaign for better hospital food in Wales begins – join the fight

Today my official campaign to stop the slop finally got off the ground.

As you all know I’ve been banging on and on and on about NHS food for years – until a few weeks ago, starved and delirious, I finally snapped.

My mission is simple but will need a lot of support.

I want the Welsh Government to look at the food the Welsh NHS feed their patients, investigate and see if it is up to scratch.

Then I want them to give staff the right support and facilities to feed people (including tailoring meals for people with certain conditons and allergies) what they need to help them get better – instead of banging their heads against a brick wall and taking away full plates of food.

I know I will come under fire over this campaign – I am brutally honest about my negative experiences – but if it sparks improvements people can hurl rubbish my way and I will happily duck.

This is not about undermining the hard work of the amazing doctors, nurses and catering staff in the NHS.

I admire them greatly; they’ve saved my life; held my hand; stayed with me when I am frightened and gone above and beyond their jobs to keep me alive and strong over my many years of chronic illness.

They brought me back to life as a baby, and also gave me back my life from the grip of Ulcerative Colitis after so many years – for all of this I will never ever be able to repay them.

I am literally in awe of the NHS and the staff that work for them – but that doesn’t mean I don’t want to see improvements.

This campaign I hope will help them to do their jobs more easily and without having to endlessly deal with hungry, angry patients, who are not getting better because they are not eating properly.

My petition has appeared on the Welsh Assembly website and I need you all to sign it (if you want to of course).

Ludicrously I only need to get 10 signatures for it to be considered by the committee – which could mean I could ask get 10 people to agree AMs personally have to give free lollipops to donkeys (and if it is devolved) they would have to talk about it.

Please help me with my campaign, hopefully it can make just a little bit of difference for the greater good. I will not stop banging on about this until something is done – and I know you all would like me to shut up!

Petition: Food in Welsh hospitals

In the meantime please share your experiences, pictures of your Welsh hospital food, and anything which might help to build up evidence in this campaign.

Please send to @thestomabaglady or visit my facebook page to share your story.

 

 

 

 

 

A fussy or unfeedable mouth? Hospital food standards needed in Wales #stoma #lactoseintolerant #IBD

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).

Video: Junk Food Doesn’t cause Crohn’s

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.

Running a half marathon with a stoma.

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.

Blog: Nursing is still a caring profession

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!