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.

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


better hospital food

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.

 

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.

 

 

 

 

 

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!

So do you have a valve to poop? The weird and wonderful misconceptions of having an ostomy #worldostomyday


Over the years I’ve had some very blank and puzzled looks when I’ve told people I have a stoma.

I’ve been asked bizarre questions, got quizzical stares and had the weird head tilt I always accustom with pity.

While I can’t fart on demand my stoma has a mind of her own and I often find myself apologising for her always ill-timed and very vocal fanfare – always an embarrassing situation during interviews, meetings and press conferences.

The standard response to my explanation that I’m not a disgusting and suffering from a flatulence problem, is a short smile and, well, a little bit of seat shifting, while I press my hand desperately against Winnie who continues farting away merrily in the knowledge that her musical abilities are making me and others squirm.

Ever since me and Winnie first became attached and then became permanent partners in crime I’ve faced some weird and wonderful questions as to what exactly she is and what exactly she does.

While I’m open and honest about my ostomy – I think of our relationship like a marriage, all be it a very rocky one – some of the questions leave me speechless and well, a well more than a little bit tickled.

Once a mate seemed to explode from having a question inside him for so long, “so do you just open a valve and go to the toilet when you want?” just bubbled out in a very public arena.

So as it’s World Ostomy Day today, a day to spread awareness about our wonderful and life saving alternatives to having a colon, I thought I would clear up some of these bizarre misconceptions I have faced since my first operation.

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“What is that noise?” – oh yes that’s me!

If Winnie starts to fart, gurgle and be an absolute nightmare, there isn’t really anything I can do apart from laugh.

Unlike people with a colon I can’t fart on demand – honestly if you paid me £1,000 right now I couldn’t do it.

So if you’re going to fart and then blame someone else, if there is only me and you in the room there is going to be no way you can deny it, so don’t point that finger at me.

I can however slightly control Winnie’s output through being well hydrated and eating the right things, just like anyone else some things cause gas and so farting is more likely, but even if I do everything right there is no knowing how she will react.

Having her can be like living with a small child, she is totally unpredictable and is prone to strop and throw her toys out of the pram at any time, mostly during romantic or very important moments.

No doubt if I ever get married the “I do” moment will be when she chooses to disagree!

The BBC Breakfast studio toilet

The BBC Breakfast studio toilet

“Are you pooing right now, or do you turn a valve when you go to the toilet?”

Erm no and well kind of no – I mean how do you answer that without someone backing away from you.

Let’s clear this up once and for all.

I don’t have a large intestine, instead part of my small colon has been brought out through my abdomen….hours and hours of painstaking surgery created this worm like pink thing sticking just above my jeans, and that’s Winnie.

So instead of a large intestine I have a bag.

A very strong and resilient bag, which hardly ever malfunctions (I know when it does). Just like everyone else my digestive system doesn’t work on command, it is working all the time, pushing and trying to cope with all the rubbish we put in our mouths every day – it’s just mine works more quickly and much more visibly (for me anyway),

If I had a valve that would be very dangerous as it would all build up inside and make me very ill, which is what happens when I have a blockage.

In other words, yes I am pooing right now. But there again so are you, it’s just you’re doing it into your large intestine and I’m doing it into a bag.

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“Does it smell, is it clean?” And all those other questions about if I’m more dirty than anyone else.

No having an ostomy doesn’t make me any dirtier than anyone else – in fact I’m probably more hygienic than you.

The fact is if I wanted to I would no longer need to sit down to have a number two  – I guess It’s a habit as a woman I still sit down to use the toilet to empty my bag.

I don’t have to wipe my bum, read the paper on the toilet, push and strain and all those horrible things I remember having to do all to well after years of ulcerative colitis. I simply empty a bag, give it a good clean and magically it’s like it never happened.

I also change the bag every one or two days, which people can’t do with their bums, so I guess that makes me really very hygienic indeed.

Does it smell – well it depends what I’ve eaten.But if you’re talking about when I’m sat next to you, absolutely not. There is charcoal in the bag which stops that happening – so if you can smell anything suspicious it really isn’t me.

 “What does your bum do then – erm, look pretty?”

A bit like a Barbie doll I don’t have a bum hole – my arse is simply for sitting and well-looking human.

For the first year of living with Winnie we had a temporary relationship, which i like to think of the dating period. The surgeon left in my rectum in case they decided to reverse my operation. Unfortunately that redundant part of my colon was full of colitis and made me very ill, so a year later it was pulled out and me and Winnie got, well, married for life.

This means my arse hole was sewn-up (I think this is one of the hardest things for people to get their heads around).

Yes my bum does nothing apart from allow me to sit down, and perform squats and lunges at the gym.

The pros of not having this are ridiculous.

I don’t get piles and can never ever again have an endoscopy (of which I have had millions), and (one for the adults) I can never have anal sex which can only be a result!

“Do you regret it, does it bother you?”

Absolutely not and if it bothers you than that’s your problem!

While me and Winnie have our ups and downs, I wouldn’t get rid of her for the world.

That might shock people, but if tomorrow they told me I could be some miracle reverse her I don’t think i would do it.

I’ve never been more well in my life, fitter healthier, and I’ve never felt so free.

If I got rid of her (which I literally can’t) I would stand the chance of going back to the way I was, living in constant fear of illness, crippling pain and having my life ruled by an incurable medical condition.

I wouldn’t change her or apologise for having an ostomy (unless she is making farting noises), and why should I?