Getting caught short, why toilets need to be accessible for everyone

As someone with an ostomy bag and who’s had Ulcerative Colitis for well over a decade I’ve used more toilets than the average Joe.

Indeed you could probably call me a toilet connoisseur.

I’ve used lavish toilets for mayors, all to revealing bathrooms with glass doors, ones tiled and marbled with arty shots on the walls, and ones which should be visitor attractions they’re so unique and beautiful.

But as someone with IBD I’ve been forced to use bathrooms that no person should have to step foot in – in my desperation I’ve been made to venture where no woman should ever have to go, and I’m not talking about running into the mens!

For me, a lack of toilets or grossness is simply a deal breaker. Just as you wouldn’t go back to a restaurant where you got food poising, I won’t go back if I’d had a bad bathroom experience – no matter how good the food was.

Yesterday I was caught short while out enjoying the sunshine in Cardiff. I’d wrongly thought the toilets at the museum would still be open, but they were closed after cleaning, with a line of security guards literally guarding them from soiling – they must have been waiting for the Queen to come!

Anyway I can’t tell you how upset I was. We’d wandered that way to enjoy our lunch on the grass because I knew there were toilets nearby, and by the time I walked into the blockade of guards I was nearly at explosion point

I got hot, flustered, agitated and the tears started brewing as my boyfriend ran around trying to find me a toilet. Like a hero he found one, but by then our day was tainted by my illness….it was a gut-wrenching reminder of the days when I couldn’t go two minutes without running towards the nearest cubicle.

Anyway I’ve decided to throw my weight behind the Colostomy Association’s and Crohn’s and Colitis UK’s efforts to get more accessible toilets for all, with facilities needed for those who need to change their bags.

Read about the Colostomy Association’s campaign here.

Apparently one in 500 people in the UK live with a stoma, but despite that very few toilets have shelves, some don’t have hooks, and many are unclean….none of this is nice if you need to change an ostomy bag.

The case was highlighted when Welsh mum Caroline Richards’ posted a picture on social media of her stoma products scattered across a toilet floor as she tried to change her appliance. Her story was picked up by the national press and highlighted the need for basic things in toilets, which would make all the difference to hundreds of ostomates lives, and give everyone else somewhere to put their handbag and coat!

Read the story here. 

Disabled loos also seem to be cleaned less often, are more likely not to have toilet roll, and many can’t be used unless you have a key. There’s also the judgemental look when you use one,  and the fear that someone in a wheelchair might be waiting when I come out.

In my many years of running backwards and forwards to toilets I’ve seen how gross people can be – why does anyone think it is acceptable to decorate bathrooms with toilet roll, or eat sandwiches in toilets?

I’ve also marvelled at why the women’s loos are always the furthest away from civilisation; at times down or up flights of stairs, then along a maze of corridors, and sometimes even outside.

This is one of the most photogenic toilets I’ve found in Cardiff.

I’ve hovered above loos you should have to wear a gas mask to use, those blocked with stuff that reminds me of that pretty revolting scenes from Train Spotting, and had those horrible moments when you realise the only toilet roll available is all over the floor.

I’ve perched over holes in the ground terrified of spiders biting my bum, raced into public loos filled with graffiti and probably needles, tried to change my bag with my supplies placed on a dirty pub toilet floors with drunken revellers banging on the door, and endured the joys of broken toilet seats where if you don’t balance your weight on both bum cheeks equally you’ll fall on the floor.

One of the hardest things I’ve ever had to do was trying to change my leaking bag in a nightclub toilet, where it was so dark I had to use the torch on my phone to see what I was doing.

While I’m normally too desperate to make a choice over where I go to the loo, I always try to avoid public toilets at all costs. Basically because they are normally revolting and the queue for the ladies is rarely an option for me.

Anyway, this is the 2016 (well last time I looked it was) and it’s time for public services to be better and more accessible for all members of the public.

In a great move the Welsh Assembly (where I work) has changed its disabled toilet signs to show they are for people of all genders and with all disabilities.

Massive fan of this at the Welsh Assembly @CrohnsColitisUK #IBD #Ostomy pic.twitter.com/j5cPvZbhhF

— Rachel Flint (@DailyPostRachel) April 26, 2016

I just hope this is something adopted by local councils, and then rolled-out further into coffee shops and shopping centres.

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:

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=887

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.

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Little me, my ostomy, and Ulcerative Colitis versus the Cardiff Half Marathon – I came out on top!

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I can’t walk down stairs without wanting to scream out in pain right now.

Weirdly after running a half marathon at the weekend on Monday I felt surprisingly ok – but I was a little bit distracted.

Apparently the not being able to sit down comes in after two days and for the first time ever I can’t stop eating everything in sight.

Anyway, even though the pain is getting just a little bit on my nerves now, I am I beyond proud with what I achieved on Sunday.

I ran a whole half marathon without stopping, walking or really slowing down – yes me!

I finished the race in 2hr 14min and 11 seconds (those seconds make all the difference) which is awesome compared to the 3hrs it took all those years ago when I did the Great North Run at the height of an Ulcerative Colitis flare.

Funnily enough about half way through the Cardiff race on Sunday I started to really need a wee (well I thought I did). It got to the stage where I thought I might burst, but there was not a chance in hell I was going to stop and queue for a loo if it wasn’t my ostomy that was the problem.

I stubbornly carried on determined not to let needing the loo ruin my time – I mean after a life totally ruled by toilets I was not going to give a queue for the lavatory the satisfaction of ruining my pace.

Somehow despite a few hills (which I ashamedly and rather vocally swore at) and this desperation I ran the whole thing and even sprinted at the end, crossing the finish with a few fist pumps as I couldn’t believe I had done it.

What amazed me the most is how well behaved Winnie was. She didn’t start kicking off until about three hours later, when I was obviously ridiculously dehydrated and starving – it is often easy to forget I should drink more than the average person (and that doesn’t include wine).

Thank you to everyone who sponsored me, encouraged me on the way, and tried to make me see the challenge was possible – it was all so worth it and Crohn’s and Colitis have bit more cash from my pain.

Anyway, I appear to have caught the running bug. My mirror is slowly getting decorated with medals and I’m collecting running t-shirts at a bit of an alarming speed.

I might not look pretty when I run but I am starting to love it. I get time to think, get fit and often see stunning sunrises and sunsets. I also like the respect runners have for each other – a little bit like the hello walkers in the country feel obliged to give each other, like it’s part of the highway code or something.

So I’ve decided this time next year I’m going to do that marathon I’ve always talked about. I’m thinking the Chester marathon so I can see friends and family and have a bit of a celebration after.

I am the fittest and healthiest I have ever been in my life. To be honest I need to grab this chance while I can, as I’ve learnt how my life can flip when I put things off, and where better place to train than Cardiff Bay.

I know I need to work up to it, so my plan is to do two or three more 10k races and another half to prepare and then go for the big one. Don’t worry I won’t ask for sponsorship for them all, but the plan is by the end to have raised £1,000 for Crohn’s and to raise awareness of Ostomy Aid on the way.

People think I’m crazy, but you only live once – and I want to be able to say I ran a marathon!

Oozing skin, vomiting and hundreds of tiny dragonflies for VisitEngland challenge

I’m really sorry at how rubbish I’ve been recently. Everything seems to be getting on top of me. Work has been hectic, holiday planning has taken hold of every waking moment outside the office, and I have been feeling generally, well, crap.

I haven’t posted any photos of my skin over the past few weeks because it would have made you all violently sick. Three weeks ago my skin was so painful I couldn’t walk – my legs were covered in puss-filled boils. At around the same time my skin blew up so did the skin around my stoma, it became bright red again, like it had been burnt. I also got itchy rashes around my eyes, and my eye condition came back.

All in all I have spent the last few weeks feeling like a scale covered snake, well, a hairy scale covered snake – if that’s at all possible. I’ve been unable to shave anything, unable to exercise and unable to look after myself. I’ve felt sick, unattractive and damn right sorry for myself – and mega stressed with my job and my holiday planning.

I went to the doctors in hope of a cure – what I got was infuriating. The doctor, who is apparently a skin specialist, was gleeful at my pain. He could not have been more pleased that I was in agony. He smiled and laughed and seemed joyful that I had such an ‘unusual’ aliment. He seemed to want it to stay put, so that he could study it and poke at it – it was so insensitive, and is something that has happened far too often in my weird and wonderful years of living with the joys of IBD.

Anyway, I eventually resorted (well was forced by my boyfriend) to go to the out of hours doctors. I have no idea why anyone bothers with their real GP after that. The woman was amazing, and really listened to me, prescribed me antibiotics, and was incredibly sympathetic. I wish I could have her all the time, and, in hindsight I should have found out her name and swapped surgeries!

The antibiotics worked but left me feeling rotten. I threw up constantly, and was even on them during Andy’s birthday party. I felt awful. The weekend after I started them me and Andy headed to Milton Keynes so he could do his Spy Day experience I bought him for his birthday last year. We went down the day before, so we headed even further afield to have a go at one of my Visit England challenges – a list of challenges which feels like a massive effort but has so far had many surprising rewards.

Wicken Fen nature reserve was stunning. It was wild and raw, with never ending stretches of long grass as far as the eye could see. I was far too excited to see a dragonfly, and started peering around, shushing Andy as I tried to spot one of the tiny insects. When I finally spotted one I was overwhelmed. I was like a little child. We must have stood for half an hour watching two MASSIVE dragonflies flit about – I guess I wouldn’t have bothered if I’d have know I would have seen dozens by the end of the day.

it was an amazing day. We saw some beautiful insects, and even a deer, it wasn’t the most sunny day so we didn’t see as many dragonflies as we could have , but that didn’t matter it was still a breathtaking experience, and one I would never have done if I didn’t have this bucket list.

The only problem was that we walked miles and I suddenly got very sick. The antibiotics started to churn stomach acid around and I couldn’t go anywhere. I felt dreadful. Luckily I made it back to the car, but when we got to tea I was violently sick – not pleasant for anyone.

Luckily my skin has started to clear up. Which is fantastic as we are heading to America in a week’s time, and I’m so stressed I can hardly breathe. I couldn’t be more excited for the trip, but there is still so much to sort out both for the holiday and at work. I’m also (this is one for the girls) trying to figure out what to do about my bikini line now I have my stoma – should I brave it and get a wax or try the cream?

And I won’t start about the swimsuit nightmare I’ve been having!

Anyway I will blog again tomorrow about my preparations for the big trip! Hope you are all well.

Do you want to join in with the Visit England Challenges and find out more about Wicken Fen visit http://www.visitengland.org

Freezing Ice Bucket Challenge for Crohn’s and Colitis UK and Ostomy Aid

If you haven’t seen my Ice Bucket Challenge you can watch the carnage below – I’m warning it’s not a pretty sight!!

Things to bear in mind while watching this:

• I’d just got back from a run, hence the weird get up;
• I’m wearing my sports bra as I wanted to show my ostomy scar – I didn’t consider the fact that my bra might have fallen down with the force of the water…thank god it didn’t;
• Random walkers stopped and watched from the bridge, and a drunk fisherman gawped throughout;
• I was terrified of falling in or being attacked by a swan – they can beak a man’s arm you know…;
• and, last but by no means least, it was bloody freezing!!!!

I nominated my best friend out in Spain, Rhian Wyn Evans. She has stuck with me through the best and worst of times, so this might seem like an odd way to say thank you, but she will love it. I miss her so much that sometimes it hurts; she never fails to put a smile on my face, and is the most positive and determined person I know – I seriously can’t wait to see the video of this!

Also I sentenced my chief reporter David Holmes to the baptism of freezing water. I will be shocked, to say the least, if Mr Holmes does this challenge. It doesn’t seem like the kind of thing he would willingly do, but if he doesn’t…lets just say I wouldn’t be surprised if three little imps (me included) jump on him with buckets of freezing cold water after deadline day – I don’t think that classes as assault officer, it’s for charity after all.

I also nominated the CEO of Crohn’s and Colitis UK David Barker. This is the guy I sat

Me and CEO of Crohn’s and Colitis UK David Barker

next to on the sofa for the BBC Breakfast junk food saga. He is a lovely man and I’m sure will be delighted with the news that he hasn’t escaped this charity challenge. On twitter he told me he would be partaking in the challenge on Monday, I can only apologise for whatever crazy stunt they have lined up for you at the Crohn’s charity HQ – I’m so sorry in advance David – but it has to be the price you pay for being the CEO of a national charity.

The two charities I nominated are extremely close to my heart. Crohn’s and Colitis UK is a lifeline to so many people just like me. It is a charity – and IBD was a condition – which was hardly heard of a couple of years ago outside of those suffering from the condition. But now it feels like everyone is talking about the condition and it is in the media all the time. Despite that so much still needs to be learnt, so much more needs to be done to understand IBD, and to get the general public to understand the real implications of it to sufferers and their families. So we all still need to keep talking, raising money and spreading awareness – the battle is not won yet, it’s only just begun.

My second charity is one which is a relative unknown. I only stumbled across Ostomy Aid when trying to figure out what happened to all my unused ostomy appliances. I wondered what would happen to the batches of bags I couldn’t use as my skin rejected one sort after another, and once my rectal stump got removed (leaving me not needing a second, child sized bag).

Ostomy Aid (which is run by Ostomy Lifestyle, another charity providing support for ostomates) is a remarkable charity. They take all those boxes of unused bags, which would otherwise have ended up in the bin, and take them to third world countries. My unused fistula bags could help a baby in Africa to survive in the most difficult of circumstances, or be used by an African mother, sister, or grandmother. I guess in a way we take the delivery of the bags (straight from our delivery company, all packaged up with samples) for granted, out there it must be a never ending battle to know whether the most basic aid will get to them, let alone medical supplies like this – which are so needed and essential.

They also twin stoma nurses to communities in developing countries, including Moldova, Iran, Zimbabwe, Ethiopia, Malawi and Sudan. It is simply breathtakingly good work and something I would love to get involved with one day.

I hope in the future to be able to write more on Ostomy Aid – perhaps even go out and see how my bags are used? But we will have to see if that is feasible.

If you want to learn more about these two remarkable charities please visit their websites (I have provided the links below):

http://www.ostomylifestyle.org/content/ostomyaid

http://www.crohnsandcolitis.org.uk

My Crohn’s was not caused by junk food – my story after appearing on BBC Breakfast today

“My Crohn’s was not caused by a few sweets or treats”, says Chronicle reporter after BBC appearance

Rachel Flint hits-back after claims on BBC Breakfast junk food causes Crohn’s and Ulcerative Colitis

Chester Chronicle reporter Rachel Flint appears on BBC Breakfast

Looking at me you wouldn’t know I have an incurable illness, which has left me passed out on toilet floors and in so much pain I’ve begged to die.

I look like just like any other 26-year-old woman, but for more than half-my-life I have been suffering from an invisible illness, which has taken me to the brink of death and forced me to battle to stay alive.

At just 13-years-old I almost died from Crohn’s Disease; all because I was too embarrassed to talk about my agonising symptoms which left me feeling like a “freak”.

I now live with a permanent ostomy bag – after two serious operations to remove my ulcerated colon – and have spent the last year doing ridiculous challenges, bloggingand campaigning for greater understanding of Inflammatory Bowel Disease (IBD) and stomas.

So this morning, when I appeared on the BBC Breakfast sofa and was asked about the claims junk food could cause Crohn’s and IBD – I was appalled to think sufferers might be blamed for their own pain and misfortune.

Last year 19,405 young people, aged 16-29, were hospitalised with Crohn’s – which isn’t counting ulcerative colitis, the other common form of IBD – an astronomical increase from the 4,937 treated in 2003/4.

All my life I have battled against the public’s misunderstanding of my condition; been told I’m eating the wrong diet; I need a good feed; and constantly been the subject of nasty comments about my weight and non-stop toilet visits – I’ve often been calledanorexic and bulimic to my face.

I’ve learnt to be brave and put people right, but these comments still deeply hurt me – it is devastating that despite bearing my soul to the world, even some of my closest friends still don’t understand that my diet is not at the root of the problem.

To think that 1.5M viewers watching BBC Breakfast might now believe people with Crohn’s or Colitis have their agonising symptoms because they ate too many pizzas, sweets or drank too much fizzy pop in their childhood – well, it horrifies me.

In my view Dr Sally Mitton’s comments seriously undermine everything sufferers like myself have gone, and are still going through.

The idea diet causes IBD destroys the work advocates and charities like Crohn’s and Colitis UK have done to increase understanding of these misunderstood, incredibly serious conditions.

I don’t argue with the fact that diet can exasperate my symptoms; I can no longer eat raw foods due to my ileostomy; I’m lactose intolerant and I avoid spice like the plague – but it didn’t cause my illness.

But the fact is, no one has any idea what really causes Crohn’s or Colitis. There are many theories including genetics, hi-fat diets, an bacteria called MAP found in milk, smoking, and lifestyle – but not one has officially been found to be the cause.

I was brought up on an healthy diet of home-cooked food, no take aways, in a house hold of non-smokers. I was too young to drink, and I was a studious school girl who ran for her cross country team and played in a local brass band.

I was no “wild child” drinking behind the bus shelter and scoffing crisps – and even if I was I still wouldn’t deserve this condition.

Reporter Rachel Flint now has a permanent ileostomy and has never felt better

I was 14 when I was eventually diagnosed and told I would have to live with IBD for the rest of my life – it was like receiving a death sentence. I wanted to hide away from the world and curl up and die, and the prospect of surgery revolted me.

If someone had told me back then that I would be sharing my story on national TV, tweeting pictures of my ostomy to the world and have a blog about my stoma, named Winnie, with 50,000 hits – I would have said they were insane.

When I was a teenager my shame of this “embarrassing illness” almost killed me.

For almost a year I tried to hide my symptoms from the world; somehow battling through school while rushing to the toilet around 60 times a day in agonising pain – I often had accidents and always saw blood and mucus in my stools.

At the end of every school day I would collapse in an exhausted heap; and often I was so weak I didn’t even have the energy to climb on of bed – often sleeping on bathroom floors (something I was often forced to do during my time at University and while studying to be a journalist).

My weight plummeted to below six stone; through a combination of chronic diarrhoea and loss of appetite; and I was referred to a psychologist – submitting my family to the traumas of counselling for eating disorders.

My condition was misdiagnosed as tonsillitis and period pains, and more than once I was discharged from A&E as a teenage eating disorder case, being told to go home and eat more.

The first time I passed out in blinding pain while on the toilet – falling off the seat and knocking myself out when I hit my head on the bathroom floor – I should have told my parents.

But in reality it took a year and the biggest scare of my life for me to eventually confide in my parents.

I was in the toilet at a service station when I saw a sign on the door saying; ‘Do you have bowel cancer?’ Underneath was a list of many of my symptoms; abdominal cramps, weight loss, skin problems, loss of appetite, and the blood.

For the first time I realised that I could die. That my insistence on coping with this illness on my own, ignoring it, and hoping it would just go away, could actually kill me.

Telling my mum was the hardest thing I ever did. But without the support of my family I probably would have died. They have stuck with me through everything, from diagnosis to relapses and through all those times of stubbornness and pigheadedness – they turned their life upside down to help me.

Throughout all my treatments and hospitalisations I have seen things I would rather forget, and experienced things which are just plain horrific.

Tubes have ventured into places that tubes should never go. I’ve had endless endoscopies, colonoscopies, X-rays, scans, blood tests and infusions, and they all helped keep me alive.

Now 13-years-on I have finally had my entire large bowel removed – yes anus and all – and now live with a permanent ostomy bag.

For all my worrying about it, life has never been better. I feel pretty much pain free for the first time in as long as I can remember, and I feel strong, energetic and proud to have survived what will hopefully be the worse of this awful illness has to throw at me.

Doctors now believe my initial diagnosis may have been wrong; with biopsies saying my condition may actually be ulcerative colitis – but I may never know for sure as the types of IBD are so hard to diagnose.

The public needs to know more about Crohn’s and colitis. I have been lucky to be surrounded by a supportive family (my parents, sister and boyfriend), friends and colleagues – without whom I am sure I would not be here today.

I am no longer afraid of Crohn’s or ulcerative colitis – and I am no longer ashamed.

And I know one thing for sure – none of this is my fault.

• For support dealing with Crohn’s and Ulcerative Colitis visitwww.crohnsandcolitis.org.uk and join the Crohns and Ulcerative Colitis support group Chester on Facebook

Tomorrow me and Winnie (my stoma) will appear on national TV to talk IBD

Halfway through dialling the number for the police press office today I got a very unexpected phone call. Totally out of the blue I was asked if I could appear on a very well-known sofa tomorrow morning, alongside some very well-known characters (some might call one of them a national treasure) to talk about a not very well-known subject!  

Ok, I will stop being so cryptic, before you start thinking I’m going on Jeremy Kyle to talk about my love life, I have to tell you all….

I’m going to be on BBC BREAKFAST

Please don’t choke on your cornflakes – or send nasty tweets about my awful outfit or too short legs

Yes, that’s right folks, I am going to be joining Bill and Louise on the famous red sofa to talk about Crohn’s, Colitis and living with an ostomy. I think they’re going to be getting more than they bargained for. I might almost be too outspoken and have too much of a back story for what they are after, but I guess they will have to cope with that. This is the first time I have ever been on national TV; in fact I think this is the first time I have ever appeared on the telly – apart from possibly being seen bobbing around in the background on a North West Tonight report trying to catch a suspected criminal going in to Chester Crown Court.

If you know me, have known me, or have been interviewed by me, and didn’t know I have Crohn’s/Colitis and an ostomy bag, tomorrow with be a massive shock for you (and you must have been living on a different planet; with no access to local newspapers; blogs; Facebook; twitter or come within 100 miles of anywhere I have spoken in the past year, or 14 years!).

Of course I’m nervous. John from BBC Breakfast just phoned me to check everything was still ok for tomorrow, and I almost chocked on my tea. Being on the other side of the notebook/camera is always a nerve-wracking/bizarre experience, and has always left me feeling confused. But I like to hope I will do ok, as, I guess, if it all goes wrong it will be brought out time and time again at every function, work do and event I ever attend for the rest of my life.

But tomorrow, no matter how bad my hair looks when I wake up in the morning (pretty damn awful); how red my eyes are; or how little I’ve slept worrying about my blabber mouth, I will be appearing of TV screens across the nation. People will be literally waking up to me – how horrifying! I’m so sorry if you wake up in the morning, bleary eyed and spot me making my TV debut. I just hope that whatever outfit I chose doesn’t make me blend into the sofa, or leave me looking like a bouncing head with an invisible body, or spark national outrage!

At the end of the day raising awareness for Crohn’s and Colitis is incredibly important to me. I want to show everyone in the world that no matter how alone they may feel right now, there is a light at the end of the tunnel. I want to share my story; increase understanding and show that living with a stoma is nothing to be ashamed of. I want to tell the world IBD sufferers are not just complaining about a tummy bug, period pains or food poisoning – that IBD is a life changing condition, which has serious consequences for sufferers outside the toilet stall. But I also want to show people like me, especially young girls, that no matter how alone they feel there is help out there; they are not alone and will eventually feel better – even if it means having a massive operation and living with an ileostomy – I will never regret my decision to have Winnie (my stoma) for the rest of my life.

I hope I do the IBD and ostomy community proud – if not, you’ll all have a hilarious clip to show of me crashing and burning for years to come!

And I have to pack 13 years of turmoil into a few minutes – which could turn me into a gerbil.

Turn on your telly on BBC One at around 8.10am tomorrow morning to watch me talk about IBD (hopefully!)!

Walking in a monkey onsie for Crohn’s & Colitis #no93

Oh dear! Yes your eyes haven’t gone wonky, that’s me walking through the streets of York dressed in a fluffy pink onsie, accompanied by a Teenage Mutant Ninja Turtle and a life-sized ladybug – oh, and my Dad, dressed as himself going to bed!

It might look like a bizarre Flint family outing (minus my sister who couldn’t make it) but we are actually walking for a special cause. On Sunday we joined more than 300 people to traipse around the city in the sweltering sunshine to raise awareness and much-needed funds for Crohn’s and Colitis UK.

It was a boiling hot day as we walked 8KM along the banks of the river, and it didn’t take us long to be sweating heavily and deeply regretting the onsies. My kids-size monkey onsie may have been a cheap Primark bargain, but was obviously designed for winter, with thick fluffy lining totally unsuitable for the baking hot sunshine. It was the farthest I’ve walked since my recent completion protectomy operation and I was flagging by 5KM, forced to unzip my top and walk with my smiling monkey hood grinning out from my backside like a weird bum face. But I did feel proud when I’d finished. Even though I’ve started running again, walking 8KM was a massive achievement especially with the heat and added excitement of dressing up. I was exhausted afterwards. My ostomy output went funny due to dehydration, which was obviously something only dairy free ice cream could solve!!!

We may have looked odd, exhausted and far too hot, but boy did we have fun. It was amazing to see so many people giving up their time to raise awareness for an illness which has totally destroyed and transformed my life. It was hard to tell which of the participants were ill and which were friends, family, doctors, health professionals and general supporters, which I guess just shows how invisible an illness IBD is, and, thus, how hard it is for non-sufferers to understand.

And we did come second in the fancy dress competition – so I guess almost passing out was worthwhile.

If you are reading this for the first time and don’t understand IBD (Crohn’s and Colitis) please visit Crohns&ColitisUK to learn more about the disease and how you can help.

 

 

 

I am MORE than IBD – I am a PERSON, yes I have an ostomy bag so what? #WorldIBDday

Today is World IBD Day. This morning more than FIVE MILLION PEOPLE woke up with Crohn’s or Ulcerative Colitis. Can you imagine that? Can you comprehend that many men, women and children living in pain, running to the bathroom, dealing with blood loss, fatigue, weight-loss, skin problems, and constantly battling to stay alive? I live with Ulcerative Colitis every day and even I can’t get my head around that number!

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IF you crossed one of those five million people in the street, at the supermarket, or queuing to pay for a lottery ticket would you know they were ill? If they asked for your help would you give it? If they wanted to go in front of you in the queue for the ladies loo at a bar would you let them? Would you be understanding if you saw someone who looked perfectly fit and healthy using a disabled loo? Would you judge them, would you put it down to period pains, stomach ache or a bad curry if you saw someone racing to the toilet at work with constant bouts of diarrhea? Would you humiliate them, call them anorexic or criticise their diet? Would you play practical jokes on them; use all the toilet rolls to teepee a nearby house, bitch about their size, tell them to get a good feed, criticise their frequent toilet breaks at work, call them names and point at their injection bruises, or call them antisocial for not coming to meals out or going out drinking? 

OR would you respect them for living with the constant battle against an incurable illness? See the bravery behind the disease, look beneath the pain and see the courage, determination and downright stubbornness to survive?

I was just 13 when I almost died from shame. I decided I would rather die than talk about my symptoms. I allowed people to watch me turn into a living skeleton, coping with agonising pain, living every second in fear, constant agony and wanting to die rather than keep living with the pain. I almost got my wish. Why? Because I didn’t want to be called a freak. I was pooing out my entire body weight, rushing to the toilet around 50 times a day, passing out, clawing at the cubicle walls and stuffing my school blazer in my mouth to stop myself screaming out in pain. But I didn’t get help because I didn’t want to be judged. All my life I’d been bullied, I didn’t want them to have poo freak to add to their name calling list.

YOUS can see a story I did in the Evening Chronicle about my illness here

People can be cruel. I know the things I’ve listed above seem a little extreme, but I know they happen because I’ve seen it. I’ve had fingers pointed at me. I’ve had the names, the insults thrown in my face while I’m almost collapsing from pain and dehydration. I’ve felt the slap of the dreaded A word when I’ve lost all my weight and supposed friends bitch behind my back as I rush to the loo, calling me bulimic and whispering about my skeletal frame and inability to hold food down. I’ve had old ladies shout at me for using disabled toilets in train stations, when my ostomy bag is about to explode, and been told to stand up on trains when I’m about to collapse.

It’s bad enough having to deal with the accidents. With the reality of sometimes being so desperate you lose control, or have to go through the humiliating procedures and undignified bed baths (etc). All those things are hard enough without having to deal with other people’s judgements, we are often giving ourselves a hard enough time.

Even now, 13 years after I first felt the pain I live with every day – first saw the bright red blood and passed out in the toilet cubicle – I’m still left reeling from people’s ill-informed judgements. I don’t show it but I’m horrified when people call me anorexic to my face. I’m a stubborn old goat, but it still brings a tear to my eye, and reminds me of some pretty dark times in the PE changing rooms at high school. How dare they? And what if I was? It is a serious mental illness after all and not something gossips should use as an insult.

People bitch and gossip, of course they do. I like a good gossip as much as anyone, and I’m sure I’ve been a Queen Bitch at times, and upset people in the process. But 13 years is a long time to live with nasty comments behind your back, little snipes about the smell of the toilet you’ve just been in, digs at your weight, pokes at the quality of your work, there is no wonder depression often goes hand in hand with IBD.

Oh and that’s not to mention the people who think you’ve brought it on yourself. I can’t count the number of times people have told me to change my diet, stop drinking, cut down on exercising, have a good feed – oh, and the best one GIVE UP WORK! It seems everyone is an expert when it comes to other people’s illnesses. They might want to help (some genuinely do) but at the end of the day most don’t really want to find out more about IBD, they just want to put their two pennies in.

But it’s not all their fault. IBD is an invisible illness. Looking at me today you would probably think I have an eating disorder not a chronic illness. If you passed me in the street you might not even think I was any different to anyone else. I look thin, tired, but fairly normal. I’m not holding onto the walls for support, I’ve not got drips hanging out of my arms (most of the time), I’m not in a wheelchair or being supported by a carer, and I’m most definitely not obese. At the end of the day, despite more than five million people living with IBD all over the world, many people still have no idea what it is. And out of the few that do, there is still this preconception that Crohn’s and Colitis sufferers are just people who need to go to the loo a lot. 

There is so much more to it than that. IBD is not IBS. It doesn’t go away if we change our diets (it can help some people); it won’t go away if we take Imodium, cut out booze, stop eating curry. Many IBD sufferers end up reliant on a toxic mixture of drugs to keep the illness at bay – including Immunosuppressant drugs which do exactly what they say on the tin – and some (me included) on chemotherapy. Many have to have surgery in their lifetime, either to get rid of blockages or strictures, or to remove large parts of their colon.

And that’s where I’m at this WORLD IBD DAY. At 26-years-old I’m a loud and proud OSTOMATE. Me and my stoma Winnie have been attached at the abdomen for just over a year and I’ve never felt better. Two months ago I had her made permanent during a serious operation which left me without a rectum. I now have an ostomy bag, something I never thought I would be able to cope with, but you know what I’m fine. In fact I’m more than fine, I’m alive, and without it I would be a living shell, probably too ill to leave the house.

I would be lying if I said I don’t wish I could have my old, flat stomach back, but it’s not going to happen. Me and Winnie are going to be together forever. I still go to the toilet, just in a different way to other people. I’ve got used to it, I’ve accepted it, I wish other people would do the same.

I am not just an illness, please don’t label me, I am a person not a disease. IBD does not define me, I define me! People with IBD are some of the bravest and most determined people I have ever met. I mean you only have to look at Sir Steve Redgrave to know we don’t let our illness stop us doing anything!!!

PLEASE LEARN MORE ABOUT IBD THIS #WORLDIBDDAY BY CLICKING HERE AND LEARNING ABOUT CROHN’S AND ULCERATIVE COLITIS!!!!

 

Show off your tummy for IBD #GetYourBellyOut showing Colitis Who’s BOSS

Just a few days after getting home from my recent hospitalization, lying in bed in pain from my pelvic drain,

Last year my ileostomy, fistula and wound

restless and unable to sleep at around 2am, I was absent mindedly scrolling through my twitter feed and stumbled across an unusual tag. Curious I clicked on it and was amazed to find dozens of pictures of bellies, abdomens and stomachs of all different shapes, colours and sizes. Some had scars, some had staples, some had stomas, some had ostomies – all of them had one thing in common…yes you guessed it – all had Ulcerative Colitis or Crohn’s Disease.

The tag #GetYourBellyOut is the best campaign to raise awareness for Crohn’s and Ulcerative Colitis I’ve seen in years. Yes it was inspired by the no make up selfie twitter campaign for Cancer Research UK, but when something works that well why not adapt it and use it to promote other causes and help tens of thousands of people across the world. It’s inspired a heck of a lot of people, increased public understanding of IBD, helped raise money for Crohn’s and Colitis UK, but best of all it has given people strength and most importantly of all HOPE.

To say the pictures in this hashtag are inspiring would be an understatement. For IBD sufferers across the world they are life changing. Every single person who has taken a picture of their stomach has given hope to someone and helped the public finally understand that having Crohn’s/Colitis or/and an ostomy is nothing whatsoever to be ashamed of. In fact we are showing the world one cheeky stomach at a time that we don’t give a shit, and that we want the world to know about this illness so that more can be done to help both those suffering from IBD and all those who in the future have to go through the horrific ‘in the dark’ pre diagnosis stage, we all shudder to remember these days.

First picture of Winnie I tweeted to world

IBD is a disease which is often thought of as embarrassing, taboo and is hidden behind the toilet cubicle door. But as more celebrities come out to the press with the condition the public’s awareness is increasing, but its a slow journey to understanding. This campaign is literally pulling this disease out of the toilet stall and into the public domain. What you see is what you get – let’s not be ashamed, join together and educate the world. So I’ve added some pictures of my own abdomen to remind you of the journey my tum has been through over the past two years alone.

As you all know since I was first diagnosed I haven’t hidden my IBD from the world, in fact since I had my ileostomy operation I have become a loud and proud Ostomate. But I remember how hard it was to show my stoma the world for the first time. I remember the first post when I showed the world Winnie naked (without her bag) and raw, I remember feeling nervous and scared that people would think I was a freak, i half expected a barrage of hate on twitter from people slating the way I looked. But what I got when I posted the photo out to the world was more acceptance and love than I could have ever imagined. It was incredible. The understanding and acceptance was enough to reduce me to tears. I gained hundreds of followers within hours and my blog was shared across the world. I had heartfelt messages from people telling me how brave I was, how amazing I looked, how I had given them strength and hope, how I had made them less nervous about their ostomy, I even had celebrities retweeting the picture in the hope to spread awareness of IBD and stomas – I was surprised and overwhelmed.

This campaign is just like that all over again but on a much larger scale. I wish I’d thought of it, I’m so glad that @ColitisandMe did. The idea is beautiful. For any woman, man, child with IBD posting your abdomen online can be a horrifying notion. I mean many of us have battle scars, stomas, bags, drains, stitches, bruises from injections, weight loss, open wounds, and those that don’t often suffer from bloating and pain in that area. I understand why people think twice about letting anyone see their stomach, for years I didn’t want anyone to see mine at all and heaven help you if you tried to touch my abdomen. But scrolling through the hashtag shows that we may all different shapes, sizes and have different battle wounds but we are all beautiful and our bodies tell a story of courage, bravery, determination and hope. Every one of the pictures tells a different story; some have had surgery many times, others have lost vast amounts of weight, others look toned and perfected in the gym. But no matter how different they are our stomachs have been through a lot and we are still here and hopefully inspiring others.

my stomach before my first op – sore and scar free

I like to think of my scar as a little reminder of everything I’ve been through and I’m still going through. Next year I will get round to getting that tattoo to permanently etch my battle onto my skin. I’m proud of what I’ve coped with and managed to achieve despite my illness, and I’m hoping this social media campaign makes people feel the same way. I know some celebrities have already got on board with this campaign but I hope more do soon to spread awareness and of course raise cash for Crohn’s and Colitis UK. If this campaign helps just one person not feel alone with their illness and gives just one person hope, or educates one employer or school, then it will be a step in the right direction.

I’ve joined the hash tag and posted pictures of my stomach, scar, ostomy bag and all. So what are you waiting for, join the trend and make a difference. Come on, you could change a life forever!

To donate to the cause to raise money for Crohn’s and Colitis UK text IBDA99 & your donation to 70070 you can also follow the #GetYourBellyOut Facebook Page by clicking here. Or donate by LinkedIn here. Come on every penny helps!

Ouch skin problems last year

Just before this operation – my horrible fistula which is now gone!

This week after second op – amazing!