Day 5: A battle of skin and bones: the ever changing size of IBD #7daysofIBD


I’ve always had an ongoing battle with my weight, let’s put that on record.

I have bad body confidence issues, and I rarely realise quite how tiny I am until I see pictures – basically I simply don’t see what other people see when they look at me.

I’m currently the happiest I have ever been with my weight. My training at the gym and healthy-ish eating regime has allowed me to get into the right-side-of-normal weight bracket for the first time since before my illness began.

But even now that I’m happy and well I still think people judge me.

I know when people look at me they think I’m too thin, skinny, anorexic even, but this is me – I am tiny, and it’s my body after all.

There is always so much said in the media about tiny people: we get a lot of bad press, and I guess I’m a bit of a hypocrite because when I look at thin girls I also jump to the same conclusions as everyone else.

But the fact of the matter is, while being skin and bone isn’t a good look, some people are just thin – either because we are built that way, or we have an illness you can’t see.

I have Ulcerative Colitis, and when I was model-skinny it was because my bowel and anything I put in my mouth was literally falling out into the toilet – I was tiny because I was chronically ill, in agonising pain and feeling like I was going to die.

I 100% did not appreciate someone coming up to me and saying, “that girl needs a good feed” or, even worse, “I wish I was as thin as you” – you really don’t, believe me!

I also didn’t appreciate people watching me eat ( know some did it out of concern) – or even worst commenting on how many times I went to the loo which was a major part of my condition.

I guess what’s always made all this worse is when the cake is passed round I can’t eat it – I might be lactose intolerant but the fact I turn it down seems to shout that I have an eating disorder.

Either way there is an assumption made (even by me shamefully) that we choose to be this size – and the looks and comments always hit you right where it hurts.

Over the years my body shape has morphed, with it being unrecognisable from year to year either through severe illness or healing drugs.

Looking back at pictures I hardly recognise the person at times…the moon faced girl, with a giant lollypop head (from steroids) balancing on a skeletal body; the bloated frame of a fresher enjoying booze at uni; and the painfully thin, stripped to her ribs teenager covered in bruises and wires.

I now know how terrifying it must have been for my family to see their daughter wasting away, especially in the months before they diagnosed me.

I’ve been so thin it has actually hurt.

Have you had that? 

It’s not just not a good look, it is actually painful to be that tiny. I’m talking about when your own ribs and spine stick out so much they cause you pain – when you can’t lie down because you’re so bony.

Yes, I’m not going to lie, I’m obsessed with my body. 110% obsessed with having a good, fit, healthy, and well, decent sized body, I love the gym and I eat well – but I will not weigh myself.

That’s because I am actually obsessed with my weight. 

After years of being forced to monitor it non-stop to check every ounce and kg vanishing from me down the toilet, it’s become ingrained in me to the point of an almost obsession, a bit like checking my poo.

So I only weigh myself when I have to (like when I am in hospital). And I now check my body through how comfortable I feel in my own skin, and that pair of jeans – it has got to a stage where I can say that I am frightened of loosing weight, and want to stay as I am.

Yes,  90% of all of my body image issues, battle with weight, and my constant collar bone is due to my battle with IBD – it can strip me of 2 stone in just a few weeks, it is frightening how fast I waste away.

But I will put this on the record, probably 10% of how tiny I am is down to the fact that I grew up thinking being thin was the way forward (due to magazines and pop stars) and even now, as an adult, adverts and movies tell me I need to be slender to be hot.

If it was up to me I would be more curvy, more athletic, and a bit more womanly – but I will never be that shape, my body simply isn’t made that way, so i work hard to look after what I’ve got.

I have my imperfections, and being small has taken it’s toll on my body and battered it over the years. I have Ulcerative Colitis, I have a stoma, and I have skin conditions and well have had osteoporosis since i was 24.

But for now I am healthy, and I am happy with how I am – even if I do struggle to get jeans to fit, and get endlessly frustrated by the lack of my size in the shops.

I would just love it if people would have thought over the years, when I was struggling to walk, vomiting and running back and forth to the loo, to think it might be insensitive before telling me to fatten up; calling me anorexic; or saying “i wish i was that thin”.

I was living on the edge of hospitalisation and in chronic pain – if my daughter is ever that thin I will be panicking – so no you don’t wish you were that thin!

Just a thought!

 

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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 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.

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.

 

 

 

 

 

My Mini Egg phobia – it may be “egg”ordinary but I’m not making it up


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When I was at high school I had a music teacher who was afraid of buttons. I don’t mean freakishly large buttons, ones with weird designs on them or even Button Moon, I mean just the average cardigan button. She hardly ever wore clothes with buttons on, and would freak out if a stray one happened to be placed on her desk. Obviously the moment she confided this in someone, word got around like wildfire (as it does in schools filled with pubescent teens) and we revelled in her bizarre pain; with students leaving buttons here there and everywhere in the hope of finding her shaking behind the piano during choir practice after finding a spare shirt button sneakily wedged between the keys – note to self, children are cruel.

I always thought these unusual phobias were just downright silly. I secretly loved watching those documentaries on “the woman who is scared of supermarkets, bananas, tea bags and washing up liquid” – you know the ones on people who literally can’t do anything for fear of seeing a giant purple penguin as they walk down the street. WEIRDOS RIGHT????

Little did I know that just a few years later I would be getting a serious taste of being the ‘freak’ with the irrational phobia. I learnt the hard way that weird phobias are usual born from horrible, often unforgettable experiences. Ok, so mine is one of those phobias that I often laugh at. Mine is a phobia which would raise a smile to a gargoyle’s face. In fact I would challenge you not to smirk when you hear about my possibly unique fear which used to reduce me to a blithering wreck this time every year – thankfully I’m just about starting to get over it.

Yes, you’ve guessed it, I’m frightened of mini eggs. Not just any mini eggs though, Cadbury’s Mini Eggs – you know the ones which are everywhere from around January every sodding year. Easter is hard for me – button phobia doesn’t seem so weird now does it – poor woman.

Shockingly enough not many people know this about me. I’m sure you can understand why I don’t shout it from the rooftops. For one it’s embarrassing, childish and well a little bit pathetic. Oh and it takes a bloody long time to explain and often I just can’t be bothered. Usually I save this quirky fact for that ‘getting to know you’ game; you know the one where you say three facts, one which is true and two which are false to a room full of strangers and they have to decide which is true. Shockingly enough no one ever decides the mini egg phobia is true but would rather believe I studied to be a forensic scientist, or my father’s an astronaut than my weird chocolate fear. You can only imagine the looks of surprise and, well horror when they learn they will be studying with, flat sharing with, or working with a totally irrational freak for the next so many days/months/years of their lives.

A pause… and the obvious questions always follow. What? Why? How? The great classics…and I launch into my spiel, which is a lot more sensitive, understandable and hilarious than you might expect. You never know you might just feel sorry for me!

Of course I’ve not always been frightened of little balls of chocolate. Easter used to be a fun time filled with magical Easter egg hunts around caravan sites, back gardens and rooms in my house, or searching for golf tees (to win eggs) in my primary school playing fields, getting Thorntons’ bunnies from my gran and ending the day covered head to toe in chocolate and feeling sick on our annual caravan holiday. So many good memories.

But it all changed for the worse when I was around 14 years old. I hadn’t been diagnosed with Crohns (then, now UC) for very long when I was admitted to Booth Hall children’s hospital in Manchester for treatment. I was suffering from a severe flare and needed IV steroids pumping into me in a hope it would stabilise my condition and allow me to get back to school and stop collapsing all over the place. It was only meant to be for a few days, but it all went horribly wrong when I picked up a hospital virus (which my mum only later learned was MRSA when she deciphered the doctors notes when they weren’t looking – it was in the days before the wash your hands 15 times before touching a patient and ties/ flowers were banned).

I have been in a lot of pain in my life, but nothing ever like that. I went into toxic shock and ended up on so much morphine it took weeks to finally come down from the high. In the end the doctors had to knock me out to stop me screaming, and I finally woke up in the peace and quiet of HDU attached to a cinema of monitor screens, with wires coming out of every patch of exposed skin and my parents watching anxiously by my side. During this time I watched the Matrix with my dad – I’ve never watched it again as it gave me motion sickness and I think it is a another phobia – I’m afraid of seeing it again.

At the time of my admission it was Easter. The wards were full of crayoned pictures of chicks, eggs and bunnies. Paper sunflowers, lambs and other spring things littered the walls of the children’s gastro ward, and relatives had brought in enough Easter Eggs to supply a food bank. During my stay the Man U seconds (right name??) team even came round to give out Easter Eggs – I was having a scan or asleep or plain didn’t want to see good looking footballers when I was chucking my guts up, had no makeup on and with unwashed hair- so I didn’t meet them. But I did end up with a variety of eggs around my bed during my stay – none of which I got to eat as I was on a liquid only diet and my sister had eaten them all by the time I got home.

Anyway the presence of eggs everywhere the eye could see combined with large quantities of morphine resulted in a very odd effect on me. As my body fought off the toxins coursing through my skin I started my life long torment of night frights, which I still have today. These are very real nightmares which leave me reaching for the phone to check family members are alive and terrified of opening the front door in case of a massacre outside – frankly these have become rarer but when they happen are still horrific. I also experienced horrific hallucinations – some which have stuck with me for a very long time.

The mini egg thing comes from a particularly frightening hallucination. Me and my family had recently watched the Mummy, and for all of you who’ve seen it I’m sure you’ll remember the bit with the Scarab beetles? Well I must have been more traumatised by them than I thought, because my hallucination, which I saw clear as day as if it was as real as this iPad Mini screen, was of me being eaten alive by swarms of scarab beetle style Mini Eggs!!! Basically the hallucination, which was followed by a reoccurring nightmare, saw me walking without a care through a meadow on a sunny day when I hear a weird scurrying noise behind me. Then I see a swarm (well ocean) of multicoloured ovals cascading towards me… I start to run as they get nearer and I see thousands of mini eggs with sharp pointy teeth and evil eyes scuttling towards me. YES I’M SERIOUS MINI EGGS WITH TEETH!! As they get on top of me, swarming over me like the scarab beetles, looming over the hill comes the Cadbury purple bird.. giant, hideous and laughing at me as I’m nibbled to death!!!!

Terrifying!!! And it seemed so real! Ok, so sat in the comfort of my home I think it’s fairly funny, I mean Mini Eggs with teeth, but even now when I see a bag of Cadbury’s Mini Eggs I want to throw them across the room. It honestly played havoc when I worked on the tills in Sainsbury’s, I could hardly bear to touch the packets and flung them across the scanner to the packing areas… so many kids must have had smashed mini eggs that year because of my morphine trip! Obviously most of my mates thought my phobia was hilarious, and many tried tricking me into touching and eating the chocolate monsters, with one friend kindly buying me a krispie cake while we were working at JD Sports together…when I reached into the paper bag and felt the shape of the eggs I almost threw up!!! Extreme I know!

Ok, so it’s not a severe fear – like fear of flying, spiders (although I am scared if these) or work (often referred to as laziness) which will actually stop me from living my day to day life – but it’s a phobia none the less which I’ve had to come face to face with in work, while shopping, in cafés and in restaurants. It’s not helped by the fact Mini Eggs are the face of Easter or that they’re usually placed next to the till so you literally can’t avoid them. And it’s definitely not helped by the fact Easter (according to the Gods of marketing) actually arrives in our supermarkets straight after Christmas.

I’ve luckily got over my fear (somewhat steadily) over the years, something which has been helped by Cadbury’s removing the bird off the packaging, oh and me no longer frequenting the chocolate aisle due to my lactose intolerance. But it still lurks in the back of my mind. I may no longer throw the packets across the room, ban them in the office, or avoid the Easter Egg aisle, but I do shudder at the adverts and packets/tubes when doing my weekly shop.

I guess that will never change. It’s a laughable fear but one that reminds me of one of the worse moments of my life and no doubt after writing this I will wake up sweating and screaming “anything but the Mini Eggs” at 2am!

Turkey and all the trimmings – my best Christmas since being diagnosed with IBD


Right now I’m sat on the sofa wrapped in a blanket wearing my Christmas pjs and feeling very content. It’s Boxing Day evening and I don’t feel like I’m going to explode through over indulgence, throw up or gripping onto my stomach through agonising IBD pain. I simply feel happy. I honestly can’t remember a single Christmas where I have felt this good before. It’s amazing.

Santa's been

Santa’s been

For a long time I’ve not really appreciated the joy of those few days off over Christmas. Not because I’m a Scrooge, and not because I hate turkey, but because I know that I will be ill. Something about the festive holidays sends my body into meltdown, and it doesn’t matter what I do (not drinking, exercising and having early nights) I always end up so ill I need to go to hospital – I think its the excitement of Santa coming.

This year Christmas has been perfect. I’ve enjoyed every second, I even managed the drive between families without a hiccup. For the first time I can remember since being diagnosed with Crohn’s/Colitis I’ve been able to sit through the whole of Christmas dinner without having to rush to the loo in agony ever other mouthful to pass bucket loads of blood or throw-up the food my poor mum slaved hours in the kitchen making me. I even made it through the board games and managed to spend time with the kids first thing in the morning without needing to rush back and forth to the loo to avoid any embarrassing accidents.

Me (mental hair) and the kids on Christmas morning

Me (mental hair) and the kids on Christmas morning

Ok it wasn’t all plain sailing with my Stoma. Some of Christmas dinner really didn’t agree, but there again what does it matter if I see my sprouts and stuffing a second time – it was worth it. Lying in bed in my childhood room on Boxing Day morning the pain was pretty bad as nuts from the stuffing and cranberry sauce attempted to force their way out of Winnie – it hurt pretty bad – while my fistula kicked off and leaked again – but that happens all the time so what the hell I can put up with that. I also had to constantly empty Winnie (ostomy bag) today, she wouldn’t stop. I’m sure that’s the luxurious food but she really really wants to remind me she’s still here – I guess she’s saying STOP EATING…JUST STOP!

On Christmas Eve I finished work and me and Andy raced off to Barnsley to see his sister Abi, her husband Rob and the kids Jake and Isabel. I’ve never spent Christmas with kids; never seen the excitement I felt as a child trying to sleep on Christmas Eve; never been woken by a little person peeping their head around the doors bouncing with excitement about Santa having come. It really has opened my eyes…children remind me that Christmas is magical.

We all curled up on the sofa and watched the Grinch in our festive pjs. I avoided the popcorn – which I’m sure would be even more painful than sprouts swallowed without chewing at the work meal. Then, once we’d tried to get the most excited child I’d ever seen get to sleep, we got our tea down us and started to help Santa deliver his presents. It was awesome. I won’t let you into all of Santa’s secrets, but let’s just say he brought in an awful lot of sparkly snow on his boots when he came down the chimney in the night.

I drank too much wine and woke to a little head peeping round the door asking to come in. In the past I would have been too ill to comprehend anything let alone to cope with the most excited child I’ve ever seen… She was pretty much shaking with excitement. I’ll never forget the look on her face when she got down the stairs and saw mountains of presents with big snowy footprints all around them – it was the look of pure joy. The part in bed was pretty bemusing – she recited the whole of Goldilocks And The Three Bears – totally random but with fantastic enthusiasm.

Argh a small person

Argh a small person

We spent the morning in our pjs unwrapping presents and playing games, and for the first time ever I didn’t miss a second by being stuck on the toilet…It was a dream come true. We then headed back on the motorway to my parents house in sunny Rawtenstall. We were both shattered. I honestly don’t know how mums and dads across the county get through Christmas Day – it’s exhausting. I seriously don’t know how my folks did it, it’s admirable really.

Arriving at my house I was excited but smelly. After a shower we unwrapped our presents in true Flint style – me tearing into layers if wrapping paper at the speed of light like a frenzied animal, while my sister took each one out carefully and examined, read, played with it! My parents got me everything I wanted and more, but the stunning coffee machine stole the show – complete with hundreds of coffee pods and all lactose free for me and Andy to enjoy (from now on it’s going to be very sophisticated at our flat). They also made us and amazing hamper full of dairy free goodies, smellies and homemade wine etc – I’m going to be massive if I’m not careful! My sister got us everything we need for our 24hr movie marathon – the complete Lord of the Rings blu ray box set and loads of alcohol.

WOW

WOW

Andy stole the show with a beautiful guitar. I had asked for one so I could start learning for my challenges, but I never expected he’d get me one. It is stunning. I’m afraid I know nothing about guitars, but my dad was really impressed, so it must be good. He also bought me the Harry Potter box set – another one for our movie marathon – I’m overwhelmed – I’ve obviously been a very good girl this year.

Anyway dinner was everything I hoped for and more – delicious food, amazing company and so much warmth it was almost stifling. My mum is an amazing cook, the sprouts were made with chestnuts and bacon (she even cut them in half so they didn’t block my Stoma). And she made quails egg scotch eggs for Andy – delicious! Pudding, a dairy free sticky toffee, was heavenly, and for the first time I left the table after Christmas Dinner full but not sick and about to explode.

First time I've drawn in ages - success

First time I’ve drawn in ages – success

It was a magical day, made better by seeing the whole family, both mine and Andy’s. I would go as far as saying that as an adult it was “the best Christmas ever”. I hope yours was to…

 

Tomorrow – boxing day and horses: