The Stoma Bag Lady THE MOVIE – no really I’m serious


So I’ve created this FANTASTIC (I’m so modest) video of the story of the Stoma Bag Lady. It’s basically a trailer for my Youtube channel. I thought I would share it with you guys, I hope you like it, if you do I will do more of these kind of blatantly big headed self promotional kind of things, if not I will continue to strive to raise awareness of IBD in new an exciting ways.

Oh, and if it helps, this video does not have my annoying voice on it and is lovely and short, unlike many of my other more rambling Vlogs.

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Tango 190 – harrowing story of PC Rathband – a review of sorts


So last night I finished Tango 190 The David Rathband Story. Of course I won’t insult you by explaining who PC David Rathband is, you would have to have been on Mars to not have been stuck to your TV screen during the Raoul Moat manhunt, and to have missed the media coverage surrounding the horrific rampage and shooting of PC Rathband while sitting in his panda car. I picked up the book after finding it hidden in a dingy corner of our newsroom, in pristine condition (obviously unread as none of the pages had even been thumbed through) and gathering dust. Knowing the story I was intrigued and took it home. Even knowing the ending I finished the book last night with a heavy heart, and wishing that the book could have had a happier ending for a man who had dedicated his life to policing an area of England which will always have a special place in my heart.

The book is desperately sad, at times painful to read, but deeply intriguing. I guess there aren’t many people out there who get shot in the face by a rampaging gunman and live to write a book to speak of the unspeakable anguish of living haunted by the final vision of your attacker. I thought I knew a lot about what happened, I thought I knew everything about the trial of Moat’s two conspirators (they referred to themselves as hostages), but this book sheds light on new facts and often so unbelievable they are humorous parts of the trial and events in Rothbury that weren’t widely publicised at the time.

Non fiction often surprises me. Often you think you know a lot about certain events, celebrities, authors, politicians and well known figures, until you read their autobiographies. I used to hate these kind of books, now I’m obsessed with them. The David Rathband Story was predictably sad and emotional to read, but it was unbelievably personal. The pain he describes, the torment, the pride he feels putting on his uniform and the loyalty to his force and profession which literally holds him back from shouting out in court, is remarkable. Reading it now he is dead is weird to say the least. Knowing he was alive when it was written feels almost wrong. It is hard not to leap ahead while reading; to read it knowing he will eventually take his life puts a taint on the whole thing. But it makes the pain he describes even more intense and the way he speaks about his new life surrounded by darkness a harrowing read.

So after a sleepless night finishing the book and then spending the entire night thinking about my novel, I’ve decided I need to read something a little happier for the rest of the week. So, thanks to a fellow Ostomate and twitter-holic, I’m going to indulge in another hilarious edition of Shit My Dad Says. If you haven’t read any of these books I won’t spoil them for you but they will make you chuckle, so don’t read them under the press bench in court, in a public toilet or at a funeral ( i hope none of you would do any of these things!).

I’ve also made a list of the next few paperbacks and hardbacks I want to read before I return to work. As you all know I’m trying to clear my bookcase before starting on my shiny new Kindle Paperweight, it’s taking all the strength in the world not to start on it now, but I really want to clear my house of books I will never read again, so that I can declutter my literary world.

So here are some reads for challenge 70 for the next few weeks, a few are autobiographies so fall under challenge 98 as well!

More Shit My Dad Says by Justin Halpern – sequel to Shit My Dad Says

Ooh! What a Lovely Pair – Ant and Dec

The Man Who Smiled – Henning Mankell

The Light Between Oceans – M.L. Stedman

The Queen of Whale Cay – Kate Summerscale

Oh and I might finally – yes I’ve been trying to get through this one for years – have another crack at Tony Blair’s autobiography!!!!

 

 

London with a roar – celebrations and the underground with an ostomy


The last few days have gone by in a delirious blur. I can honestly say that these past

The Italian - too many choices

The Italian – too many choices

few days have been some of the happiest of my life. Ok, I’m no stranger to happiness, but after all the years of IBD torment I have often struggled to fully embrace times of peace, calm and success knowing another bout of illness is just around the corner. But these past few days have been different – I’m still me, just improved.

I don’t know if that makes any sense. I’m not sure how to explain it. I’m still having issues, I’m still not perfect (but that’s just me), but I feel something new…I think it might be hope.

I’ve been on a bit of a high since the award ceremony. I’ve been overwhelmed by the number of emails I’ve had from work colleagues, editors and industry professionals I never dreamed would be emailing me to pat me on the back. The messages from people I know and strangers I have never met on Twitter and Facebook have left me feeling truly humbled, and the heartfelt messages from the Coriam family have stunned me into silence. My parents were overjoyed when I rang them from my bed on Thursday morning, still suffering from the no food too much white wine induced hangover, croaking that I’d won an award…they were delighted, but I think if they’d been able to see my mascara strewn face at that moment they’ve been far from amused. It was such a nice feeling to be ringing them with good news – a lot of our phone calls start with “I don’t want to worry you” or “don’t worry I’m ok”. They must be constantly on edge when ever they see my name on the phone display.

Anyway, I know by now you will all be getting tired of me harping on about this, so I’m going to draw a line under it and get on with my job. But this award has given me a much-needed spark and shove in the right direction. It has given me hope just when I was starting to sink back into the worry pit – that constant cycle of worrying about IBD flares, test results and future surgery – and plunged me back into the world of enjoying my life almost free from IBD pain. It has reminded me I’m almost there, just one more lot of surgery and me and Winnie will be one forever and we can kick Crohn’s/Colitis out of bed at last.

It also made me realise its time to really get cracking on this list of challenges and start getting somewhere with my mission to help change the public’s perception of IBD and stomas – I’ve only got four-and-a-half-years left after all.

So on Thursday after pulling myself out of my wine daze and attempting to reply to all the lovely emails in a humbled manner, I took myself for a run along the canal in attempt to blow away the cobwebs and after deciding I’m going to do the Santa Dash this year to raise money for the hospital’s Baby Grow Appeal. Ok, it’s not a marathon but I really don’t want to make a fool of myself. If I’m honest I’m terrified I’m going to fall over in the Santa suit, which, it seems, is one size fits all. Honestly, I’m tiny, I’m going to be mooning to the whole world if I’m not careful…I’ll probably be in my own newspaper as a flashing Santa!

Anyway at 4pm I boarded the train to London for my big city adventure. I’ve been looking forward to this since Andy announced he was taking me to see the Lion King for my birthday earlier this month. Ok, so my birthday isn’t until next month, but who cares I’ve wanted to see the Lion King for longer than I can remember…and I’m sure he will get me something else to open on the day (hint hint). The train journey passed without accident or mishap (unusual for someone used to struggling with disgusting toilets, knocking myself out against sinks or getting trapped and having to txt someone to free me), in fact the most amusing moment was listening to a couple of students who wondered whether Crewe was in Wales amongst other idiotic questions which left me almost wetting myself as I fought to control bouts of silent laughter.

Seeing Andy again was like being reunited with a long-lost lover, despite the fact we had only been apart a few days it honestly felt like I hadn’t seen him in weeks. In the three days he’d been gone so much had happened, and I’d actually felt quite lonely in the house without him – I’d even started my childish habit of checking under the bed for monsters and murders…paranoid I know! I think I didn’t come up for air for a good half an hour while I whittered on and on, passengers on the packed underground mustn’t have known what had hit them. I must have sounded like Stacey Solomon or Vicky Pollard.

London is a whole different ball game, everything is faster, busier, more chaotic and much much more expensive. It is like every city in England but on speed. If you dare to stop in a street you will be collided into, and if you made the unforgivable mistake of getting lost and stopping to consult a map you will ruin lives and evoke the wrath of thousands of disgruntled workers, shoppers and even tourists, as well as creating a pile-up worthy of police intervention. Taking the tube is a mission, involving huddling like penguins into a tiny space and hoping you don’t get crushed…being slightly claustrophobic and with no sense of balance it was very far from pleasant and I found myself subconsciously trying to protect Winnie from the crush – a difficult thing to do when you have a stranger’s elbow sticking in your stomach. The tube is not the place to be worried about personal space (however it seems I turn into a queen bitch when mines invaded). And, I have to add it is not the place to go with a full ostomy bag, all it would have taken was a rogue elbow jutted in the wrong place and DISASTER.

But although I have to admit hating the tube, hating having stranger’s armpits wafted in my face and hot gusts of stale alcohol breath wafted in my face, it was made a hell of a lot easier without the constant tug of Crohn’s/Colitis. Travelling with no way of knowing where the next toilet would be was so much easier without the pain, nausea and urgency plaguing my every second. Although I still struggle with my IBD I didn’t have any problems while in the capital, and I didn’t feel that awful bubbling wave of panic the moment the doors shut and I knew the next toilet could be a good half hour away. I may have felt like my arm was being yanked out of its socket…like a sardine being squished in a can…but I didn’t feel in pain. That’s got to be something, right?

This has been long again, sorry. So I will write tomorrow about The Lion King and the Eye. I promise they won’t always be this long and that I’ll do some videos soon. It’s really been too long.

 

 

Leaving on a jet plane – first trip abroad with my ostomy


So after months of waiting and excitement tomorrow is the big day. This time tomorrow

I am sooo excited - Just one cornetto

I am sooo excited – Just one cornetto

night me and Winnie, and, of course, my boyfriend Andy, will be sitting in a fancy restaurant drinking Italian wine and shovelling down plates full of spaghetti in Venice. I am so excited I can hardly think straight.

I’ve spent the last few hours panicking that I’ve forgotten to do something. I must have checked through my ostomy kit a million times and I still think I might be missing something vital. I have my doctors note for in case they refuse to let me on the plane, why they wouldn’t let me on I don’t know, but I’ve heard all sorts of horror stories, so I’ve decided it’s better safe than sorry. Especially as I’m flying home with Ryan Air, something which I’m dreading as everyone says they are the worse airline for dealing with people with medical conditions, especially ostomy and colostomy bags.

Perhaps they think I’m going to smuggle drugs inside my ostomy bag…best of luck to them if they want to check. Think if they ask to look I will down a can of coke as quickly as possible and eat beetroot, it won’t be a pretty sight either way.

All my supplies for the journey

All my supplies for the journey

Packing for the trip has been a bit of a nightmare. I think I might have gone a bit overboard with the amount of spare bags and products I have packed for Winnie, but I am terrified that she will leak every day and I will run out thousands of miles away from my supplies and out of reach of my delivery company. I did however manage to pack them in style. I went to Primark and bought a very cheap but pretty vanity case so that all my bags, sprays and wipes are now stored together in one place. It may take up a little extra room but it makes me feel so much happier to have them in a pretty case than thrown together in a plastic Tesco carrier bag along with my laundry and toiletries.

I’ve had a few problems with my travel insurance. My company down-right refused to renew my annual insurance or offer me an alternative policy because of my hospital admissions and my operation. This was like a slap in the face. I understand how they work but it is a kick in the teeth to have to go through so much pain all your life and then have to pay so much more than others who have lived without pain for all their lives. Anyway they let me take out a single insurance policy for the trip…looks like I’m going to have to win the lottery, or marry a millionaire if i want to keep going abroad.

Of course I am panicking about the journey. I love flying, but because of my Crohns/Colitis flying has never loved me. I hate the tiny loos and the idea that a frozen block of my bloody poop might kill a random sunbather as it falls out of the sky. I despise the fasten seatbelt sign, which always seems to come on just as I start to get the warning stabbing pains associated with a massively long toilet session. the same can be said for the ascent and descent, basically the times when no one can move are the worse…for an IBD sufferer it is hell.

I’m feeling apprehensive about the flight. I’m concerned about what I can and can’t take on with me. Luckily Charter UK (my delivery company) have provided me with a travel card which says – in multiple languages – that I have a medical condition and an ostomy bag and need to carry medical equipment. I have a feeling that this card might just save my life in these kinds of situations. My doctor has signed it and I have stored my sprays and water dispensers in a clear plastic bag along with my lip gloss..but just in case they are confiscated I’ve got a spare stash in my luggage.

Happy after a run in prep for our Italian holiday

Happy after a run in prep for our Italian holiday

It’s almost time to go. I’ve spent the last hour looking up restaurants in Venice, Florence and Rome (our three amazing destinations) which accommodate lactose intolerant diners. I can’t wait to tuck into some vegan ice cream in Rome…and scoff plates of spaghetti Bolognese. But more than that I can’t wait to do my first international stoma bag lady challenge – ride a gondola in Venice. It is meant to be very expensive, but I have always wanted to do it so it’s going to be really magical.

Me and Andy deserve a holiday. After everything that’s happened with my health, and the massively bumpy ride we’ve been on over the past year or so with my Colitis and my ileostomy operation, and even the stress of moving in the last few weeks, kicking back in Italy will be just what we need.

I couldn’t hope for a better boyfriend and I can’t wait to take him to the Ferrari museum to go on the F1 simulator. I also can’t wait to experience the romance of Italy and share it with Andy.

We are away for nine days in total. I will try to blog, share pics, tips and experiences when I can, but if you don’t hear from me just know that I will be having a heck of a good time.

Going abroad with my ostomy is a massive leap in the dark. It is, in itself, a massive challenge. We will be flying, getting on trains, eating foreign foods and attempting to communicate my condition and allergies in a foreign language and environment.

Yes I’m nervous…but am I excited?

Hell yeh!!

 

 

Climbing 275 steps – one giant leap on my road to recovery


I’m in a fair bit of pain as I write this. I can’t quite described what’s going on, or

A giant leap for Winnie

A giant leap for Winnie

comprehend what the problem is, all I know is that it is something to do with my fistula and that it is nothing like I have ever felt before. I’m not quite sure why it’s happening, or what’s happening, but I’m not feeling great. I’ll talk more about it tomorrow, but I thought I would mention it now as I’m drugged up to my eyeballs, so please forgive me if this post reads a bit like a druggie’s random train of thoughts…that would be the tramadol talking!

Ok, so it’s no Mount Everest but on Saturday I climbed 275 very steep and winding steps to the top of York Minster tower. Why? Because it is part of the 101 Visit England places to visit before you die…and because I have never done it. Over the years I have had the pleasure and honour of playing in the Minster a handful of times with a brass band I was a member of (have I failed to mention I am a band geek 🙂 yes I play the euphonium..an instrument which is about ten times to big for me and makes me look like a small child playing a giant’s trumpet), during an annual charity carol concert. Playing in the Minster was always an overwhelming and truly awe-inspiring moment; the music swells up into the rafters, filling every nook and cranny of the enormous building, rising up into the heaven’s, creating an ambience that seems to vibrate around your very soul. Something about hearing a brass band perform in a church is so humbling, and the sound, the pure, stripped-back sound of a single note echoing through the pews would send shivers through the soul’s of even the most cold-hearted person in the world. It’s times like these that I feel the most alive.

At the start, before I ran out of puff!

At the start, before I ran out of puff!

Anyway, despite having performed in the Minster I have never walked up the Tower. So after weeks of umming and ahhing about making the trip to York me and Andy finally jumped in the car and braved the trip on Saturday. It wasn’t the nicest day, drizzly and overcast to say the least, but that wasn’t going to stop us. I have to admit that this is one of the things I love about this blog and my 101 challenges, that I can’t just say ‘oh I can’t be bothered’ anymore, or ‘I feel to ill’..if we’d sacked the trip off on Saturday just because of a little bit of rain I would have felt that I’d not only let myself down but I would have let down you guys, and the rest of the IBD and ostomy community…ok, that might be a bit over the top but that’s how I feel, and it drives me to keep going even when I just feel like poo!

And that is the reason why me and Andy paid £15 each to get into the Minster and climb the tower. I know £15 EACH!! If it hadn’t been for the fact that I had to do it for my challenges I would have down right refused to go in, I would have turned around and walked out just for the shear principle that I will not pay that much to go into a place of worship. I mean I have travelled to some incredible places and seen some incredible churches including Notre Dame and the Sistine Chapel and I honestly don’t think I have ever paid that much to go into a church before…I know that it costs a lot to upkeep a church of that size, but seriously that is a disgusting amount of money to just walk around a building and climb a tower, which, I hasten to add was covered in graffiti the whole way up (how people have time to etch their names into stone while being herded up those steps really boggles my mind, they must take chisels and hammers!)

Anyway the walk up was horrific. Yes, I know that it has been months since my

At the top - upset about the netting, ruined the view

At the top – upset about the netting, ruined the view

ileostomy op but I am still not as fit as I was before my surgery, and the whole situation was made worse by the fact that there were around 50 other people staggering up the steps, so there was no time to pause and catch your breath. Seeing as I have a slight fear of confined spaces – I know it’s neurotic but I’m one of those people who burst out of a lift when it opens like its been on fire – it wasn’t an ideal scenario. I spent the whole climb up clinging to the railing and listening to the family in front rabbiting on and on at each other – I got the impression that someone was in big trouble! Winnie (my ostomy) was not having the best of days, but managed to stay calm enough not to have a leak as I tried to heave my tired legs up the hundreds of steps, very much aware that if I had a dizzy spell the rest of the people behind me would fall down like dominos back into the Minster. It wasn’t my favourite experience, but when I reached the top, exhausted and with legs shaking like jelly, the views where beautiful, (if not ruined by the barbed wire netting all over the place no doubt to stop jumpers) and I felt a massive sense of achievement that I’d climbed all those steps – ok, so it’s not that big an achievement but when you take into account that months ago I couldn’t walk to the toilet and back without someone holding on to me, it really is a giant leap in the right direction.

The sense of achievement and relief was short-lived when I realised I had to walk all the way back down, which is always harder than going up, and was made worse by the fact my muscles seemed to have locked and were frozen in the walking upstairs position. But at the end of it I might have felt a little tired and dizzy and my legs might have felt like jelly, but I looked a down sight better than a lot of the people who came red-faced and sweating down the steps, puffing and panting like they’d run a marathon – and I guess they didn’t have the excuse that they’d had major surgery just a few months ago.

MMM CHOCOLATE

MMM CHOCOLATE

After completing the challenge me and Andy treated ourselves to a cup of hot chocolate at a nearby chocolate cafe. I’ve been to York a fair few times but until this weekend I had no idea that York was most famous for its chocolate heritage. It seems that York is the birthplace of KitKat and other delicious treats that I unfortunately haven’t had the pleasure of eating in years BOO! I was so excited as this was the first time I had been able to have a hot chocolate in public since I was diagnosed with being lactose intolerant around four-years-ago. This cafe did dark chocolate and the option to have soya or rice milk instead of the normal dairy milk. It was an unexpected treat, and very rich and yummy…but as per usual Andy’s drink looked far tastier than mine and I have to admit that spoiled it a bit for me as the green-eyed monster raised her ugly head, and I spent the majority of the time in the cafe wishing I could have a sneaky taste of his very scrumptous looking white hot chocolate! – sometimes I despise being lactose intolerant.

We finished off the day walking through the Shambles, which despite the drizzle was a very enjoyable experience, ending up in a vegan cafe for a cake, as I wanted to have a little treat, which was an underwhelming and pricey experience. The pudding was mediocre and I didn’t like the very hippy atmosphere of the place (nothing against it, just not my cup of tea), Andy really didn’t like his coconut paradise cake…not really sure who decided paradise was the right word to describe it, more like bouncy sludge?

I really am tiny!

I really am tiny!

Anyway soon after that we were forced to give up and go home as my remaining colon started kicking off and my fistula started to cause me problems. Luckily that was at the end of a very full day, so the timing wasn’t too bad, although I obviously would rather it didn’t kick off at all.

My verdict? York is a beautiful place with stunning heritage, shops and scenery. Don’t visit the Minster unless you really have to see it, it is definitely a once in a life time experience. The views from the tower are beautiful, but they are nothing compared to other tall buildings across the world such as The Eiffel Tower or the Empire State Building. But, although it was a lot of money, I don’t regret it. I feel like I have really achieved something in my road to recovery and in embracing my life with a stoma, and shown that you really can do anything and that having an ostomy shouldn’t stop you doing whatever the hell you want.

At the Minster

At the Minster

Oh, if you go reward yourself with a hot chocolate. You won’t regret it!

 

 

Coping with a NG tube – guest blog as me & Winnie get 10,000 views


I can’t believe it but after just a few months me and Winnie have had 10,000 views on our blog.

I know this doesn’t mean that 10,000 separate people have read about my crazy mishaps and adventures with my temperamental ostomy, but I am honestly amazed that so many people have clicked on the different posts and read about my life.

When I first started this blog I didn’t think anyone would read it, apart from maybe my mum. I just wanted to help others who suffer from Crohn’s or Colitis (or any other kind of chronic condition) not to feel alone, and to show the world that having an ostomy bag is not disgusting, taboo, or something to be ashamed of, and that it most definitely isn’t the end of youth, fun and freedom – in fact after more than a decade of a life ruled by IBD having my operation has meant just the opposite.

Sharing these experiences with you guys has been eye-opening, fun and sometimes extremely emotional. At times sharing my story, pain and mishaps has been upsetting, but just the act of putting these feelings and problems out into the unknown for everyone to see has been sort of therapeutic. The responses I have got have been incredible. After years of being terrified about what the world would think of me if I had a stoma, me and Winnie have been welcomed with open arms into a community of brave, understanding and generous people, and thousands of strangers have accepted Winnie, despite all her poop, inappropriate farts and nuclear explosions.

I want to thank you all for sticking with me through all this craziness. Sometimes I’m incredibly bubbly and positive, other times these posts can portray the side to my life were the illness rules me and I just feel like a miserable wreck. I just wanted my experiences to help one person, and I thought if that happened the, at times, hellish journey I have been through would all be worth while. It’s safe to say I didn’t think anyone would read this, and I am blown away that so many of you have.

Anyway, now that I have got past this milestone I have decided to share someone else’s story on my blog.

I found Kate on twitter and was inspired by her positive attitude despite being relatively newly diagnosed with Crohn’s Disease, (and of course that she shares the same name as a certain princess) and at the time having to go through the trauma of wearing an NG tube. I guess I was inspired by how open she was being about the condition as I remember how I tried to hide mine out of embarrassment, so much so that I almost died from the shame. I’m lucky enough to say that, although I have had tubes shoved in places even aliens wouldn’t probe, I have never had an NG tube, (I avoided it by the skin of my teeth once!) and although I know I would put up with it I don’t think I would handle it anywhere near as classily as Kate. 

Hi, my name is Kate Middleton, I am 17-years-old from Liverpool. I was diagnosed with Crohn’s disease in November 2012.

Kate out and about with her NG tube

Kate out and about with her NG tube

I am going to tell you my top three tips for if you ever need for an NG (nasogastric tube).

  1.  Don’t hide away.

You are still you even with a tube in your nose. Live your life as if you never had it, you will start going mad looking at the same four walls otherwise

2. Ignore some people.

Most people will look then carry on with their own business but there are some people who will keep staring. Just let it go over your head and forget about them, they don’t know why you have it. Easier said than done I know.


3. Stock up!

Fill your house up with boiled sweets, ice lollies and fruit tea, this is more if you can’t eat while on NG feed but it just gives you a nice taste.

You can read more about Kate’s experiences with IBD at her blog: crohnsgirlblog.wordpress.com

 

(If you want to share you story, tips or any experiences please get in touch, it would be great if I could feature one guest blog a month to help spread awareness about how no two people are effected by IBD or cope with their stomas in the same way)