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.

 

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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.

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.

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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.

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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.

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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 

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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!

Why am I waiting for my Ulcerative Colitis to return? It’s not even possible….


I can’t remember the last time I laughed hysterically at something.

You know that feeling where you feel like your going to wet yourself, or worse poop!

Earlier today I actually laughed out loud, and as the sound reached my ears I almost jumped out of my seat thinking someone else was in the room – that’s how alien a sound it was.

I guess I’ve been feeling pretty low recently and I’ve been giving myself a really hard time about it.

It’s been over a year since my final operation (hopefully ever) to remove the last evil part of my ravaged bowel and strip that horrific disease from me. I’m not going to pretend everything is perfect, but I have never been better, and that horrific disease has been sewn out of me for over a year!

So it’s hard for me to understand why I feel so low and tired, surely I should be shouting from the rooftops?

When you first get well after a long illness it’s the strangest feeling. For years I lived with a disease that would hide behind a hedge and pounce at the worst possible moment, draining the life from me and taking until I just didn’t have anything left. Sometimes it would leave me alone for a few months but it was always waiting until life started to feel just about perfect before flaring up in my face and messing everything up again.

I guess I’m waiting for that moment, I guess I’m expecting it to come back.

Of course, that would be physically impossible – I don’t have a bowel any more to be ravaged!

But I’m not my positive self at the moment, I just don’t feel quite right, and I’m not having the adventures I sat in that hospital bed dreaming I would be having once I was well and living my life to the full. Instead I’m being a bit of a boring old arse!

That’s why I’ve not been blogging. I suppose I feel a bit of a fraud.

But tonight I was watching a film which made me really think about what matters in life.

In the past few months I’ve left everything behind for a new job in a city where I know absolutely no one, and, if I’m honest, I’m finding it pretty tough.

But watching that tonight reminded me of why I started this blog. It was a bucket load of selfishness – a way of me unloading my feelings on the world – teemed with a genuine desire to help others not to feel alone if they faced the same journey.

This blog was always meant to be about hope, adventure and above all else honesty.

I think I might have forgotten that a bit on the way, and I want to say I am truly sorry for that.

I’m not in any way comparing myself to the amazing woman in the C-Word, a film that left me covered in mascara and clinging to my teddy overcome with emotion at her strength and bravery.

But she reminded me that no matter what you have to carry on, look life in the face and say “you will not stop me” – her story made me feel hope, and gave me a little bit of a slap around the face and a kick up my sewn up bum to sort myself out.

Reading some of your comments tonight made me think that this blog is something that matters, and not something I can just ignore until I think I’ve got something amusing to write – I mean we could be waiting years!

And so I’m going to start blogging again, and, of course, trying to crack on with some of these adventures.

I’ve missed you all so much. I can’t wait to start this journey again….

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?

Beating the January blues #dryjanuary after over indulging in Bruges


IMG_7145It’s official, I’ve made it through the first week of January without drinking and not had a nervous breakdown. Ok, so that makes me sound like an alcoholic, but team that with giving up sweets, Dr Pepper and Diet Coke (basically brown drinks) I’m surprised I’ve not killed someone!

In the run up to Christmas I really indulged. Naturally I stuffed myself with turkey, pigs in their fatty blankets and other yummy thigh boosting treats on the big day itself, but it was the drinking and general pigging out in the run up and post hangover indulgence post-Christmas that really did the damage to my health.

For my birthday my lovely partner surpassed himself with a romantic and totally surprise trip to Bruges. It was stunningly beautiful, and, after weeks of working around the clock and feeling unfestive, just what I needed to get me in the proper spirit. But while exploring the windy streets and pretty chocolate box houses and shops, I confess I may have tried a few too many beers, chocolates and well, lets just say anything I could eat I damn well put in my mouth – it would have been rude not to right?

If you’ve not been to Bruges, a few tips:

1) Go on the brewery tour – it’s really cheap and you get a massive beer, the guide is also incredibly knowledgeable and very entertaining!

2) Go to the proper bars, not the ones in the square, which are touristy and over priced

3) Visit the windmills

4) If there before Christmas, go to the ice sculpture festival – almost froze off my hands but well worth it

5) Don’t drink the wine, they have no idea about wine (the only wine bar we found only seemed to know white or red), stick to beer and spirits

6) The best chocolate shop is tucked behind the square – it’s tiny, I wish I could remember the name, but it is great and they select the chocolates for you – even Rick Stein gives it his seal of approval

7) Go to Lizzie’s Waffles – amazing ROSE hot chocolate (even does soya milk) – I was surprised how many places did soya – and Andy had a shockingly large waffle

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Luckily as a lactose intolerant person (meaning I’m the one in the office who always refuses the home-baked treats) I didn’t manage to put on too much weight. Being lactose intolerant in the capital of chocolate is not the best feeling, but did stop me from eating the front of every building in a manner similar to Hansel and Gretel. But I did manage to push my ostomy to the point of meltdown by drinking beer. Apparently, as someone who NEVER drinks beer and pulls that funny, repulsed face, looking like I’ve eaten very sour grapes every single time I’m forced to try it, my body HATES beer. I did like the fruit beer, but even that, despite tasting yummy and like cherries, is too much like beer for my ostomy and body as a whole to cope with. That teamed with numerous sausages from the German market, stews and mussels, made for a particularly revolting sight and smell every morning in the toilet bowl.

While in Bruges my ostomy went into meltdown. It basically hated me. But as per usual I was determined to enjoy myself, didn’t listen and carried on stuffing my face – when in Rome (well Brussels) and all that!

Anyway we had a lovely time, but just like when I came back from Germany my appetite is still ridiculous. I’m constantly craving meat and bread, and for someone who normally lives off spinach, rocket, avocado, porridge and fish (ok and sweets) this is a nightmare. I’ve carried on drinking and eating at a ridiculous pace, and I basically need to stop as I feel ill all the time – all out of my own doing!

So it’s 2015 and I’ve vowed for the whole of January to abstain from the dreaded booze. I’ve also cut out Diet Coke and Dr Pepper (basically all the fizzy pop I like) and the dreaded sweets. It’s only 30 days – it should be easy – during my life I’ve given up food for months on end and lived off disgusting shakes (Ensure) to give my bowel a rest, and I’ve given up alcohol for months on end in a bid to sort out my illness and to recover from surgery. But January is always hard, everyone seems to be beating themselves up at the moment, it’s hard to get out of bed, dark all the time, and everywhere looks empty without all the decorations – not to mention everyone is broke.

I’m proud that I’ve made it to day eight without being tempted. Last night we went to the cinema and I didn’t touch any pop despite Andy having a bottle of Coke next to me. I’m starting to feel better for it, something which didn’t happen straight away as I’ve had a number of unshakable viruses. I’ve got more energy and I’m sleeping better.

I even managed to force myself to go for a run today, something which I have a love hate relationship with. I love running but hate the first minute!

My other new years resolutions are:

To run a half marathon – aiming for one in around March, April time.

Run at least twice a week

Write this blog more regularly

Be more organised – especially with appointments

Get back in touch with old friends and be better at keeping in touch

Finally do that bloody reading challenge

Learn French properly

Get a new job

And, obviously, do as many challenges as I can and as much as I can to raise awareness of Crohn’s and Colitis and Stomas – if anyone has any ideas let me know!

I have a good feeling about 2015!