Big stoma bucket list – one year gone with a flush

A year ago today I was sitting at my computer writing my first ever blog post for this crazy bucket list. A mere few weeks had passed since my first operation, I was still reeling from the shock of having most of my colon ripped from my body and I was a tiny weenie little thing, weighing in at just 6 st 2 lbs. It was boiling hot outside, I was exhausted hunched over my laptop but determined to tell the world about my condition and new life with a stoma. I was sure that no one would read it and I would be talking solely to myself, but I was not going to hide away, I was going to share my story whether the public wanted to know about it or not.

So on May 29 2013 I started Adventures of the Bag Lady, drawing up a list of 101 crazy challenges as part of a bucket list (of sorts) to fully embrace my life with a stoma. As I wrote the challenges down, attempting to get my head around the WordPress templates and world of HTML code, I had no idea what I was letting myself in for: that my life was about to be turned completely upside down; that my world would never be the same; that I would visit more places in a year than in the past five years; and that I would decide to have my stoma made permanent less than a year later.

I had no idea but this silly little list of ‘things to do before I’m 30’ was about to change my life forever. Those first few words on my computer screen would allow me to step out of the stall and out into the world as a loud and proud ostomate, help other IBD patients and catapult my stoma to national fame!

Before my operation I had lived in constant fear of life with a stoma. I was sure it would wreck my love life, confidence and condemn me to a life wearing tracksuits and baggy t-shirts. I was sure the shame of people finding out about my ostomy bag would kill me. I was terrified of what people would think; of once again being labelled a freak and of frightening people at the local swimming baths with the bulge under my costume. I didn’t think I would be able to cope; I thought having an ostomy would be the end of my life as I knew it; that I would become insular and want to hide away. In the end the exact opposite happened…but there again you already know that.

One year on, me and Winnie have been on quite a journey. We’ve won two awards: national and regional. Worked for a national newspaper, including as a lobby and Mirror reporter, specialising in IBD for a breaking news story on a Towie star’s diagnosis with Crohn’s. I’ve ‘outed’ my stoma naked on twitter for millions to see. Travelled up and down the country visiting 100 nude men, the Beatles’ birthplaces, marvelled at Banksy masterpieces, eaten vegan cake while exploring Lincoln cathedral and climbed hundreds of steps to the top of York Minster. I’ve stuffed my face with spaghetti and dairy free ice-cream during an epic Italian trip, which saw me and Winnie ride a gondola and gorge on plate after plate of carbs while traipsing around Rome, Florence and Venice. Watched fireworks on Shakespeare’s birthday in Stratford. Raced through the streets of Chester dressed as a tiny Santa, with a giant Lego man in tow. Come face to face with a naked stranger at a very awkward life drawing class, and read literally hundreds of books during every failed attempt of my reading challenges.

 

My challenges so far:

6: Get nominated for an award – actually 3 and won 2

17: Write a blog with worldwide followers

18: Work for a national newspaper

29: Take a ride in a Gondola in Venice – romantic

37: Take a life drawing class – nude strangers, enough said

53: Run the santa dash – with a giant Lego Man in tow

69: Sell something on Ebay – cost me a fortune!

89: Join a book club – which folded 😦

90: drink a whole cup of tea – I now don’t mind fruit tea

93: Wear a onsie in front of others – a monkey at the Crohn’s walk

96: Ride the London Eye – I love my boyfriend

Of course not much of this would have been possible without the support of my parents, friends and mostly my boyfriend Andy, who has been dedicated driver, and shared many of these remarkable experiences with me, despite all the drama and anguish it has caused him!

It’s not all been plain sailing. Much like the rest of my life with IBD (well even without), the last 365 days have been an emotional roller coaster. There have been very public leaks, ruined dresses, toilet dashes, explosions and destroyed hotel bedding. There have also been pains, vomiting, illness and, of course who can forget, another operation. And how could I not mention scars which reopen, hospitalizations, sceptic collections, eye infections, flu, infected bites, and a lot of run-ins with undigested sprouts, mushrooms and sweetcorn.

The difference has been, while I used to just put up with my illness and side effects and cry silently humiliated by accidents, blood and poop in my bedroom, now I share all the gory details and every humiliation with the world. And in return you guys have given me the greatest present I could ever ask for, a hand of friendship and acceptance. I have been called up by new ostomates panicking over unusual symptoms and been reduced to tears by some of the awful and sometimes hilarious stories of your lives with IBD and/or stomas. I have been moved by the bravery of normal people with extraordinary courage and determination, and their willingness to accept me into such a brave community.

Currently in progress:

1: Learn to speak French fluently – I’m currently a beginner (basic!)

5: Learn to play guitar – well I have the guitar!

8: get 1,000 Twitter followers – @thestomabaglady has 730!

19: Have a novel/short story published – well the writing has started…

30: Have a night out in Birmingham/Liverpool/Manchester/ Edinburgh

33: Complete 30 of Visit England 101 things to do before you die – very much in progress (and expensive)

68: Raise £1,000 for Crohn’s and Colitis UK – getting there

70: Read a book a week for six months – failed a few times – now 3 months in

But it’s not over yet. A year may have passed but I still have until I’m 30, which is (let’s see) 3.5 years away (eek). I have no idea how I am going to get round to all of these exciting and time-consuming (not to mention expensive) challenges by then, but I am determined not to fail, or it will be very public on YouTube, Facebook and WordPress!

So for now, to all of you out there, I just want to say, nothing should hold you back from your dreams. If you want to jump out of a plane don’t let your IBD/stoma hold you back – but please get medical advice! If you want to become an Olympic swimmer, climb Everest, run a marathon, become the world’s best violin player, don’t think you can’t because of your condition. Anything is possible. I mean if I can get 37,000 strangers (well mostly) to view my ramblings who knows what you could do???

I mean I even met Olympic LEGEND Sir Steve Redgrave!!!! What a year!

 

 

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4 thoughts on “Big stoma bucket list – one year gone with a flush

  1. Thankyou for sharing your story. I’m getting stoma made permanent in September. I’m on this journey too travelling along with good days and bad days. Not quite sure how to cope emotionally, trying as best as I can. Your story made me laugh but also I shed a wee tear. Your an inspiration Stay well x

  2. Your blog is truly amazing, you should be incredibly proud of yourself. I hope that you read my blog too (by no standards is it any good as yours). I hope that you are planning on doing the walk in London on the 28th June and I hope to see you there!

  3. You are really an inspiration! I’m 21 and got diagnosed with Crohns/Colitis at the age of 18! Like you I’ve been on every medication in the UK! Nothing has worked or it has caused some difficult side effects! I had my last medication (6mp) and unfortunately I’m now poorly – either a flare or side effects to the drug! I’m being referred to chat to a surgeon and I’m not gonna lie I’m terrified of what he may suggest or recommend for me! However, seeing you on BBC Breakfast and reading some of your blogs has given me great comfort and hope!! So thank you for that! I’m definitely going to follow in your foot steps (if I do have an operation) and make a ‘bucket list’! What a creative and inspiring way to show your capabilities (with or without a stoma). Just fantastic! Just wanted to post this to let you know that you are a great comfort to me and probably many other IBD warriors!! Thank you : )

  4. Pingback: So long 2014 – a year of surgery, loss of my backside, freedom from IBD and amazing adventures | The big stoma bucket list

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