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.

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


IMG_2110

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.

 

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.

better hospital food

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


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.

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

 

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.

petition

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.

 

 

 

 

 

“Chips and boiled potato?” – why can hospitals not feed people with intolerances and special diets 


In case you’re wondering I’m still in hospital.

Frustrated is the only word for it. I genuinely have no idea what’s going on, what caused these problems and why I’m still in this bloody place.

People keep telling me to relax, take my mind off it, use it as a chance for a break. Why not write your novel or sort out some of the trips you always talk about – yeh, because penning a best seller surrounded by people vomiting, pooing and machines going off 24/7 on two hours sleep is totally achievable, right?

As you can tell I’m beyond fed up, which means I am getting better.

Yes I’ve still got pain (I would no discribe it as discomfort) and I feel like crap, but I’m not ill enough to be taking up a precious hospital bed.

As far as I can see the reason I’m in here still is my ostomy output is liquid as soup. But that’s mainly because, as per usual, the NHS simply cannot understand my intolerance enough to feed me.

I’m in a total catch 22 dilemma. My output won’t go back to normal until I eat normally, but I can’t do that while I’m in here, which is something I can’t seem to get into anyone’s head – it is genuinely like I’m speaking in Chinese.

The fact is that despite being diagnosed lactose intolerant in a hospital they have never ever coped with it – something about having an allergy makes no sense to the health service.

 

the normal option for me – eventually found me some sunflower spread

  

just sausages love?

  

you can have the fish but no sauce – yucky

  

first proper meal since ive been in – but i struggled

  

ensure drinks

 
To make it worse as my Stoma has been playing up I’ve gone back to my low res diet to help it, something they simply don’t understand.

 Many of the sandwiches are brown bread and have sweetcorn in them, and curry is usually on the menu – despite the fact this is a surgical ward and many people have just had Stoma surgery!

Seriously the mum opposite me was handed her first meal after having her Stoma and it was lentil soup – I told her not to bother.

While resturants have adapted to intolerances and allergies over the years hospitals have thrown their hands up and said, “well, their relatives will have to feed them”!

But what if you’re on your own (like me)….well you simply starve.

Starving might be a little bit over the top, but after 52 hours of being nil by mouth my choices in the Cardiff hospital have been quite frankly ludicrous.

In the past few days while everyone else has had the choices of sandwiches and three hot dishes and a pudding, the poor catering staff has approached my bed like a sniper picking out his target, saying:

Him: “Cauliflower?” 
Me: (trying not to laugh) is that all I can have?

Him: “cauliflower with gravy?”

Me: (giving up and taking pity on him) ok!

Another:

Him: “sausages?”

Me: can I have something with that?

Him: “gravy?”

Yesterday tea time:

Him: “boiled potato?”

Me: no, can I have some Rice Krispies and soya milk?

Basically since I’ve been able to eat in here I’ve survived off Rice Krispies, the dry insides of tiny jacket potatoes, boiled potatoes and gravy – oh and on one occasion some very dry fish which made me sick. 

I’ve even been offered in a moment that made me laugh so hard it brought me to tears (tears of total frustration) “boiled potatoes and chips” – I reached cracking point then.

It’s not just in Wales, England too stares opened mouthed at me in horror at my intolerance – I’ve been fed dry tuna for days on end – but they did have menus for you to choose and plaster LACTOSE FREE across it so the kitchen at least knew. Here it’s cooked on every ward and you have to eat what you get.

It simply makes no sense. To me a key part of being well is my diet, in fact it is what makes me well and is often the element of my life which is keeps my bowel working and makes me happy.

I can get better without the right food, I can’t heal, and I can’t put on weight. I’m forcing down ensure drinks to keep myself in shape, and I’ve already lost all my hard work from the last six months of gym work and training and I’m back to 7.6 – down from 8st 1 a weight I’d never achieved before.

I’m angry, it upsets me, it drives me around the bend. I simply don’t understand how they get nutrition so damn wrong and find it so hard.

Yes we are not expecting caviar and champagne, but simply a bowl of pasta would suffice. Hospital food is never going to be Michelin star but it should be edible and nutritional and not be an eat this or starve situation.

Today’s lunch was the first proper meal I got, yes I hardly managed any and the chicken was tough. But it was welcome, even if it was too little too damn late.
I think that the NHS needs to seriously look at the problem of hospital food. If they got it right they would save a fortune – after all people would be stronger and getting out quicker not lie wasting away in beds.

Draft in Jamie Oliver I beg of you – but please not that Heston bloke I don’t want to be eating food that covers me in smoke or spits at me.

From NHS England to Wales = daleks and doctors wearing odd shoes 


I can’t seem to get enough of the Heath, for the second time in three weeks I’m back in what can only be described as a monstrosity of a hospital.

Before you all ask who knows what’s gone wrong this time but I’ve obviously got an infection and my Stoma is going hell for leather due to the amount of fluid they’re trying to pump into me.

Moving from NHS England to Wales has not been without its complications. 

For a start my medical history has somehow got stuck in the system somewhere between Chester and Cardiff – no doubt because my file is so heavy you could kill a grown man with it. 

My surgeon, family and friends are hours away, so much so it can sometimes feel like I’m abroad, I’m lucky to have a boyfriend who tries to keep me positive even when it hurts to make me laugh.

People who swan along into hospitals thinking they are going into a five star hotel are always going to have a punch in the face when they get there – and being admitted into the Heath would knock them out cold.

Note to everyone hopsitals are not a spa or a holiday – they are never nice.

The Heath is the big ugly sister of them. It is so large it feels like it’s got it’s own microclimate, stretching as far as the eye can see. The walls are splattered and peeling and in desperate need of a paint, the shower tiny and cramped and the windows are so filthy you can hardly see out of them.

Going for a scan here is an eye opening experience, you’re whisked into an industrial style metal lift, with bits of graffiti scribbled in the exposed beams inside the door, down into the bowels of the hospital.

Being zipped along the dark tunnels in your nightgown is like something out of a horror movie. You half expect to see a cloaked figure lurking in the gunnels, and it would be terrifying to be down there alone. 

To put it into context this part of the hospital – where doped up patients are wheeled through on a daily basis – is deemed so scary that it has been used for scenes involving daleks in Dr Who.

Obviously seeing a sink plunger monster  would be the thing to tip me over the edge if I was on morphine.

As with all hospitals they have done up the parts most people can see, with a shiny Starbucks in the concourse and painted corridors, but you have to be an inpatient to see this place needs a desperate lick of paint.

The problem is when, surely they would have to close wards to renovate them.

But is this any different to England; is this the nightmarish descent into dispair that the Daily Mail seem fixated on; and is there a line between life and death as David Cameron has repeatedly said.

I’m really not sure, but that description does seem extreme to say the least.

But for all my years of long serving experience in the English NHS with treatment in Salford, Manchester, Chester and Newcastle, I cannot hand on heart say the Welsh NHS is any worse from what I’ve seen so far.

I’ve had some terrible and incredible experiences as an inpatient in English hospitals (and they have on many occasions pretty much saved my life) and now I’m having experiences in Wales. Both are understaffed, downtrodden, suffer stretched resources, and struggle like hell with my lactose intolerance.

But at the end of the day, for all my moaning as all the patients wait around all day for a scan or to see a doctor who always comes when we are in the loo, they are working damn hard to try and find out what is wrong with me.

They are even now on the phone to England to find out my history and to see what they think. Which tickles me, and reminds me of a song but in my drugged up state in can’t recall which one.

Yes I’ve probably not been treated in enough Welsh hospitals to really compare, and hope never to be, but at the end of the day a hospital is not a holiday, I don’t even think it’s really about getting well (that’s for when you get home) it’s about finding out what’s wrong and being in the right place if the worse happens.

For now I just want to get home, rest and more than anything in the world eat some toast.