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


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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


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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


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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.

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.

 

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:

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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=887petition

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.

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.

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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.