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.

 

 

 

 

 

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Don’t eat coconut when tipsy – the nastiest wake up call I’ve ever had #ostomy


It’s six o’clock on a Monday night and I’m in bed with a penguin hot water bottle.

Usually I’m still in work trying to finish something at the last minute or better still running around Cardiff Bay.

But tonight I’m more poorly than I’ve been in a long time – I know it’s bad when the festive hot water bottle comes out.

The worse thing is that all this pain could have been totally avoided and is entirely self inflicted.

On Saturday I went a bit mad you see and in my fairly tipsy post rugby watching state I decided to gorge on dairy free chocolate macaroons.

Pre drinking madness

Pre drinking madness

At the time it seemed like a decent idea, I wasn’t bothered about calories or fat content, I just wanted something sweet and there they were – they should never have been in the house.

The worse thing about it is that I know my stoma doesn’t like Mrs Crimble, in fact while my lips love a bit of her tasty biscuits Winnie is repulsed by them, and tries to get rid of them as soon as possible. But while they have caused me a bit of pain in the past it’s never been enough to make me 100% avoid them.

But I’d never eaten a whole packet!

Yes you are hearing me right – the whole damn lot of them, I have no idea what came over me or how I even managed that amount of macaroons (I can imagine it was like the cream cracker challenge getting drier and more chalk like by the second). It was what some might call a moment of madness!

Anyway, I was shockingly ok on Sunday (a bit of a sore head) but at around 6pm the pain began while I was walking around Cardiff Bay enjoying the sunset and it got worse and worse while Winnie tried to push through mountains of undigested coconut – which i seemed to have inhaled and not chewed!

I can only imagine that for her it is like trying to push a boulder through a button hole.

Anyway it’s shockingly awful, and the last time I was in this much pain was sprout gate at Christmas and the time I realised I could no longer eat quorn a few weeks after my first operation.

To be honest I’ve had this wake up call coming for a very long time. I eat the worse things possible for Winnie, i stuff my face with spinach, lettuce, rocket, all manner of green high fibre indigestible stuff every single day, all of which is healthy but hardly any of which she can actually digest – I mean goodness I even went through a chocolate Weetabix phase.

But today the thing that’s weirding me out more than anything is that everything is still working fine, overly working you could say, but that she has grown, all be it doubled in size and swollen, no doubt through the intense pressure.

This hasn’t happened before, and after two years of mishaps that makes me very anxious.

I didn't mean to look this pathetic

I didn’t mean to look this pathetic

I’ve taken some tips off you all on my Facebook (thanks guys) and despite my fizzy pop ban which has been going incredibly well, i had a can of coke to try and flush out all the badness – so far that hasn’t worked but I am willing to try anything.

For now this has floored me. I’m exhausted and really disappointed that this idiotic mistake could mess up my half marathon on Sunday, but I’ve decided to just try and ride it out (keeping eating as much and as kindly as I can) and hope I haven’t done myself any long term damage.

I desperately don’t want to be the ill girl again, and no doubt will soldier on after an evening of feeling very sorry for myself and crying a bit.

There are lessons to be learnt here, the main one, don’t get drunk and eat a bucket load of macaroons.

Ok, there might be better things to take away from it than that, like don’t get drunk, know your limits, respect your body – a wealth of serious moral-ridden lessons.

But who knows my new coconut motto might well end up being the thing that saves my life – I should have a bumper sticker printed!

Training for Cardiff Half and the falling of the first leaves of Autumn


It’s my favourite season at last.

There’s nothing I like more than Autumn, although like many things in my life I have a love hate relationship with it.

The falling of the leaves and stunning colours mean the return of snuggly jumpers, thick duvets and cuddling under thick blankets, but it also means the end of summer – meaning no more coral nail vanish, flip-flops and beer gardens.

I love Autumn fashion. I find it easier to dress myself with the layers, colourful prints and return of the little black dress making dressing effortless with an ostomy. It’s not that I feel that uncomfortable in the summer, Autumn just suits me better.

But while the first fall of the leaves welcomes in my favourite and most breathtaking time of year, it also means dragging myself out of bed to run in the cold, wind and dark….which is not very fun at all.

I realise I haven’t blogged since I ran the Cardiff 10k.

It might have only been a few weeks ago but it was so hot it felt like I was running in the height of summer, despite the heat and a few training hiccups and injuries on the way I did pretty damn well.

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I finished the race with a sprint – looking far from pretty – in under 59 minutes. Not my best ever 10k but pretty good for how nervous, hot and bothered and confused I was.

Next week is the Cardiff Half and my training has been rocky to say the least.

The start of Autumn, with some confusing hot days, has led to a weird cold and stuffy feeling. I also had some sort of virus which made me dizzy – and a brace fitted making me feel like crap and behave like a total cow in heat for a few days.

But after a few very disappointing runs, on Tuesday I dragged myself out in the dark and plodded around 15K in 1hr 30min, my furthest run to date – very proud indeed.

I just hope that I stay well for the next few days, avoid the heavy drinking which seems to come hand in hand with the stresses of work, watching the rugby of a weekend, and well everything at the moment, and perhaps get some sleep.

I have started to fall in love with running.

Next year I’d like to do a marathon – perhaps then I won’t be so enamoured.

If you’d like to sponsor me for my running challenge for Crohn’s and Colitis UK please click here 

Ostomy on the run – and a wealth of injuries on the way #cardiff10k


 

IMG_0979In just a few hours I will be running the Cardiff 10k.

While my fitness has shot through the roof since I moved to Wales, having become obsessed with weights at the gym, I’m getting the feeling I’m going to be hobbling over the finish line.

Over the past three weeks I’ve been blighted with twinges in my abdomen, and earlier last week (horrifyingly) I had a few hours where I couldn’t seem to sit down without feeling stabs of pain.

Ironically for all the ridiculous weighted sit ups I’ve been putting my body through it was a run that caused it (well I think it was).

It all started after a 14k run – the longest on my own – where I felt 100% fine and got an amazing time (well for me anyway) making me feel all so proud.

Well, until I was suddenly in agony!

Shortly after I arrived home I started getting stabbing pains in my pelvis or lower abdomen, for days after it felt like pressure was building up in my abdomen and pelvis….all very uncomfortable and very, very odd.

So I signed up for the Cardiff Half Marathon – and then thought that wasn’t enough let’s do the Cardiff 10K too.

Horrific mistake.

My body has tried everything to collapse under me since I took up this new challenge, it seems to want to try and throw my training out of the window.

But right now I seem to be ok (famous last words)….

Thankfully, following some antibiotics, the pains seem to have subsided and I am back in action.

This week I managed to knock 25 seconds off my best 10k, and I’m on track to do the 10k tomorrow in under 59 minutes – if nothing goes wrong of course.

https://connect.garmin.com/activity/embed/887013082

I’ve always had a love hate relationship with running.

I have days where I’m in the zone, motivated and nothing can stop me on my mission towards my half marathon goal, on other days my legs feel like jelly, my stomach twinges around my stoma, and everything from ducklings, my mobile phone, hair, and the thought of a glass of wine tempts me to stop sooner than I should.

I often think I look pretty hot while running, with my bright pink kit, but I think the couples dining in the Bay would say I look frankly gross (I often do my sprint finish right in front of people enjoying romantic meals, sorry!)

To say I’m not a sexy runner would be an understatement. I often totally forget people can see me: I mouth random words to songs, sweat profusely, get hair in my mouth, and well seem to always get a fly in my eye.

But there again if you look good you can’t be doing it property, right?

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Anyway tomorrow will be my second ‘race’ since my ileostomy operation. A few months ago I did the back to the stadium 10k which finished in the Olympic Stadium.

It was an unbelieveable experience, but backbreakingly hot. I finished the race in 1hr 1min and something, which was gutting as I had been doing 10k in under an hour.

Anyway tomorrow’s race – which I’ve combined with the half to raise cash for Crohn’s and Colitis UK – will kick start my real training in the run up to the half.

I’m determined to get a good time next month, the last time I ran a half marathon was the Great North Run at the height of a Colitis flare. I was so tiny, exhausted, and my training had been sporadic due to illness and hospitalisation.

I only managed to stumble round due to the support of kind strangers who were also running for Crohn’s and Colitis and ran alongside me, pushing me on, encouraging me and sharing their loved ones’ stories.

This time I am the fittest I’ve ever been, happy and motivated, and I’m getting a little bit addicted to smashing personal bests.

I want (have) to prove what I can do without this illness. I want to show my own body that anything is possible and that with my ostomy I can make it all the way round the course without going to the loo – a miracle.

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Meanwhile my sister (who is a self confessed non runner) will be taking on the GNR to raise money for Crohn’s and Colitis UK. I’m beyond proud of her, and hope she gets round in one piece and with a big smile on her face.

Anyway, good luck to everyone running the GNR or Cardiff 10k, especially if you’re doing it for Crohn’s or any Ostomy charities….I’ll be rooting for you!

If you want to follow my training I will be putting a new section on my blog for you to follow my progress, and as per usual if anyone has any tips on exercising/ running with an ostomy please share.

And, just in case you are feeling generous, here is my Justgiving page.

https://www.justgiving.com/Rachel-Flint

 

 

 

Why I’m proud of my surgery scar a lasting reminder of my battle with IBD


There are a lot of things I would change about myself if I had the chance.

My wonky (some might say quirky) teeth, flyaway eyebrows and weird hairline would be top of my list.

But I wouldn’t get rid of my scars or my ostomy.

Winnie (my stoma) certainly picks her moments to have strops – the most noteworthy was bursting into farts as I interviewed David Cameron for the first time a few weeks ago.

The Prime Minister may have chosen not to comment or simply didn’t hear her popping away – but I had to struggle on with my hand desperately pressing my abdomen as she made frankly hilarious noises which would normally have had me laughing and apologising.

But despite this I wouldn’t get rid of her, mostly because I can’t.

My ostomy and my scars tell a story; from the slit in my nose marking the place the feeding tube went in as a premature baby, to the pits on my legs showing an ugly reminder of a tough time when I thought I would never show my legs again.

I often thought before my ostomy surgery that I would hate my surgery scar, that it would turn me into something repulsive.

I remember seeing it for the first time after my operation, oozing and sore, and like a war wound bound up with metal and wire – and I couldn’t cope.

But now that scar that snakes down past my belly button to my pelvis seems almost beautiful to me – it reminds me of a journey completed and a battle won.

I’ve thought about getting some sort of tattoo around my scar (not the one on my nose), not to hide it but to make it prettier, but for now I’ve decided to let it be.

So this summer I’m determined to finally get my belly out on the beach for the first time and I’m going to have a good look for a bikini to show off my figure, ostomy bag, scar and all.

And as it was World IBD day this week I thought there would be no harm in letting you all see how I’m getting on with a few selfies of how me, my scar and Winnie are looking these days.

My ostomy may be looking a little red and sore, she might fart at the most stupid moments, but two years on from my first lot of surgery I wouldn’t get rid of her for the world.

She is the most significant thing that ever happened to me – and that’s a fact.

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Happy World IBD Day – Ignore the ignorant and mean and keep fighting for awareness


It’s hard to say this, but for years I wanted to die.

You probably wouldn’t have noticed as I was a determined little sod. I kept my tears (mostly) behind the toilet door and slapped a slightly grumpy smile on my face as I threw myself into work like I was bashing out my frustrations on a career and homework punch bag.

Secretly I was begging for the pain – which left me doubled over writhing and crawling up toilet walls –  to end, and I simply didn’t care how.

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Happy and (fairly) healthy these days

I was desperate, fatigued, living in chronic pain, battered bruised and exhausted. I never considered suicide but when the pain had me screaming I would simply want it all to be over.

As a teenager I was often too tired to climb up my bunk bed ladders, at University I often slept in the toilet, and at work I filed copy from my phone while sat on the toilet at crown court, rushing to get the story written while balancing my notes on my knee.

Now I can hardly imagine how I coped, but for 14 years I did and so did everyone who tried to deal with ill Rachel day in day out.

For 14 years ill Rachel was totally unpredictable; one day bubbling with energy, the next unable to get out of bed, falling over to get to the bathroom and crying alone in desperate tiredness.

You see since I was a teenager I have lived with a totally invisible illness. To the naked eye I didn’t look sick – well sometimes bloated from steroids others just a skeleton – but inside my body a fierce battle was raging.

I had Ulcerative Colitis, for years they thought it was Crohn’s but having taken out my entire bowel they are now almost sure (well they better bloody be) that it’s Colitis.

To call people with IBD brave is an understatement – stubborn is probably a better word.

IBD is a cruel condition, it comes and goes but never truly leaves us. It flares, or more like springs up, sometimes without rhyme or reason, and ruins everything, leaving you clinging on to life by your fingertips.

Just after second op

Just after second op

The Crohn's Walk

The Crohn’s Walk

During my 14 year battle – now finally (hopefully) at an end thanks to a miracle surgeon and a temperamental ostomy bag – I learnt that a hard lesson. Pain hurts but ignorance is far more damaging.

Shops ignoring my can’t wait card so I literally pooed myself; bitchy comments about my lollipop round face (due to steroids); the needle marks on my arms; my skeleton frame; colleagues moaning about me being on the toilet too long; stares; food tips; comments about my eating; the rude tuts from old people as you use the disabled toilet; and the comparison with cancer – were just some of the things that slapped me in the face during my flares.

Today is World IBD day, and today I have something to say to everyone who has ever used my illness to say something nasty when I felt like I was hanging on by the skin of my teeth, and made me feel a little bit more shit.

To everyone who ever said “well you don’t look ill”, called me anorexic, suggested I eat something, or said “well at least it isn’t cancer’, or in the worst dig of all tried to make out I had got somewhere in life because people felt sorry for me because i was ill.

I want to say to you that I made it, despite your ignorance, and if I can so will many other people.

Words hurt sometimes more than spasms and projectile vomiting, and well staples in the bum.

And I say that knowing that I have said horrible things to people far too many times in my 27 years on this planet.

Back after my first operation – so skinny it hurts

But in the end, for all the haters and mean people in the world (and those who don’t mean it but don’t understand), there are millions of kind people and hundreds of thousands who are going through just what you are going through.

When I first started this blog a number of people said it was a bad idea, that I would open myself up to ridicule and trolls and all the other nasty stuff the internet can bring – they were wrong.

They were also wrong when I posted my first picture of my stoma on Twitter, and I got all the acceptance I had needed for years from so many people with not a single negative remark.

These days I can’t poop or fart the way normal people do, and if someone says something I try to laugh it off. But back when I was a teen it would have mortified me – i would literally have rather died.

Every half an hour someone in the UK is diagnosed with IBD – and that means one other person sitting on a toilet somewhere is seeing their world fall out of their arse and might just be begging to die like I was just two years ago.

It also means that one day I might have to see my child (if I can have them) live through the same thing, a thought that honestly horrifies me.

IMG_7957 IMG_7958So I want to say to the millions of people out there who have Crohn’s or Colitis, you are not alone.

The world is a different place these days – don’t hide in the toilet embarrassed and alone, there are literally thousands of people with IBD who are out there waiting to talk and help and be your friend.

Speak to people, your best friend, neighbour, teacher, partner, parents, you might be surprised but they are probably worried sick about you.

Surround yourself with people who care, and who love you and who you know you would look after if the tables were turned, like my amazing friends, family, boyfriend who have helped me through everything over the years and who leave me totally speechless. 1004908_411240882339946_1764660566_n

Anyone who is nasty, educate them, and if they still won’t listen they simply aren’t worth your energy – in the end it is precious.

Before I break into a Taylor Swift song I’m going to go – but don’t whatever you do in life let more poop get you down it’s a battle enough.

purple-infographic

Am I too Ugly for Love because I had life saving surgery?


10885393_10152528109831674_4836374620243785554_nNot many things genuinely shock me. But seeing a TV show called ‘Too Ugly for Love’ about people who have had life saving surgery, was like seeing a woman running naked down the street holding a giant plate of jelly – I couldn’t believe my eyes.

Tonight a young man called Anthony will appear on this show. Thousands (if not hundreds of thousands, or millions) will tune in to see how ugly he is and how is is struggling to find his true love.

He doesn’t have a second head, a pig’s nose or 17 fingers. He doesn’t even seem to have any revolting or unsociable habits which would make him unbearable to live with. He seems lovely and normal, not something from another planet and really doesn’t deserve that title.

So what makes him ‘too ugly for love’? He has an ostomy bag. Apparently that’s enough to make us undesirable for life – I think I would have thrown my shoe (or iron) at the TV if I’d seen the advert.

The show, on TLC, follows 10 single people living with medical conditions on their quest to find love, including two people living with IBD; Marcia (Crohn’s Disease) and Antony (Ulcerative Colitis) who both have stoma bags.

Apparently they didn’t even know this was the title. It was changed at the last minute  – no doubt to attract bigger ratings.

Basically they have been screwed over for their bravery – and they are brave, I mean it takes a lot of guts (no puns intended) to go on TV to talk about your love life let alone life with a bag, which many are too self conscious about to even share with close friends.

I agree that this is a show which helps people understand the difficulties we face dating, with self-confidence, appearance and telling those we date and love about our bags – I mean, how do you tell someone? It is important that these kind of issues are highlighted, and where better than talking about it on national TV.

But what about the frankly disgusting title? What makes it even worse, if possible, is the fact that the producers appear to have forgotten the question mark – stating it as a fact.

As someone with an ostomy bag I can’t sit in silence and let this disgusting title go unnoticed. As a young woman who battled for years with the idea that having this life saving surgery would make me revolting, that I would never get a boyfriend and I would have to live my life in baggy clothes, this title is the exactly the kind of step backwards people who have already been through so much don’t need.

I’ve been very lucky with my love life, but things could have been very different. I could have faced this, and a show with a title like this doesn’t do anything to help (even if the content of the show does).

I don’t believe in ugly. What some people find beautiful, others are not so keen on. Beauty is very personal, and mostly internal. Having an ostomy bag in no way makes you less attractive. We have come a long way in the past 12 months with inspirational women like Bethany Towsend showing off their ostomy bags to the world. The Get Your Belly Out Campaign went viral.

I’m proud to have an ostomy bag. it saved my life. Yes me and my bag don’t have a perfect relationship, but without Winnie (my stoma) God knows where I would be – and I’m saying that while she is having one of her many strops!

Yes I have days were I feel unattractive, but doesn’t everyone?