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2013 – what a year!

This year has been filled with highs and lows. I got sick, lived in an amazing house, held our Cleastonbury festival, laughed a lot, cried quite a bit, had my colon removed, got an ileostomy bag, had some big disappointments but also some fantastic highs, I have visited Vietnam and I’m ending the year in Sydney with my big sis!

I’ve faced my biggest challenges this year, two weeks in hospital, IV steroids, moon face, mood swings, pain, fear and the ‘decision’ – I had a subtotal colectomy with an end ileostomy and spent the last four months living with an ileostomy bag.

sam cleasby ulcerative colitis ibd ileostomy surgery

It has been one of the hardest years of my life, there were times when I felt so low, that life was unfair and that I didnt want to have to deal with all this.  But through the support of my friends and family I got through it.  I founded this blog as a cathartic way to express my feelings while I was on this rollercoaster ride and was amazed that so many of you read it.  Over 30,000 views since I started!!!!

ulcerative colitis surgery ibd ileostomy hospital

As tough as this year has been, I have come through stronger and with a sense of what I want from life.  Im more adventurous and open to change, I want to make the most of every second, Im braver than I thought and stronger than I seem.

colectomy scar ulcerative colitis

I am covered in battle scars that remind me of what I have been through, Im not ashamed of them nor do I feel the need to hide them or cover them up.  I wear my ileostomy bag with pride as it is a symbol of wellness for me.  Before my operation my life was ruled by the toilet, my quality of life was suffering and I just couldnt see a happy future.  Now my bag lets me lead a better life.

stoma ileostomy photo shoot woman beauty ibd surgery ostomy

Im travelling at the moment, I am been to Vietnam and Im in Australia now.  This is something I couldnt dream of doing before as the fear of having a flare up would have ruined it all.  In the last 3 weeks I have been swimming, snorkelling, rode a bicycle around a Vietnamese island, travelled over 12,000 miles, hiked through Aussie bush and LIVED.

vietnam bicycle ulcerative colitis ibd warrior ileostomy ostomy stoma adventure life travel

2013 has made me realise that who you are is not what your life throws at you, but how you choose to deal with it.

ibd warrior inner strength confidence ostomy ileostomy bag

woman with stoma ileostomy ostomy stoma images

woman with stoma ileostomy ostomy stoma images

sunbathing with an ileostomy stoma ostomy travel holidays bikini swimwear

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So that was 2013, lets see what 2014 brings!

Happy New Year to you all!

Love Sam xx

I am an IBD Warrior, hear me roar…

When I was in hospital after my surgery I happened upon the hashtag IBD Warrior and seeing and reading other people’s IBD journeys, their struggles and ultimately the way they overcome what is such a shit illness inspired me and gave me the strength to move forward and to blog about my own journey.

So when I had my stoma photo shoot, we also did quite a few other photos with different styles.  The last few months have been tough but through it all I have tried to stay strong, keep fighting, be a kick ass woman and an IBD Warrior.

We all have an inner strength, sometimes that strength shows itself through having to fight for your life, sometimes its in a quiet confidence, at other times it is having to speak out for what is right or in being strong enough to just get through bad times one day at a time.  Even when we feel weak and defeated, we have within us the ability to adapt, to change and to move forward.  Sometimes it is easier to find than others.  Sometimes its so hard to find that we have to speak to friends or family and borrow a little bit of their strength till we can remember where our own warrior is hiding.

The next time I feel frightened and like the world is against me Ill look at these shots and remind myself of how far I have come and that I am an IBD warrior.  Hear me roar…

ibd warrior inner strength confidence ostomy ileostomy bag

ibd warrior inner strength confidence ostomy ileostomy bag

ibd warrior inner strength confidence ostomy ileostomy bag

ibd warrior inner strength confidence ostomy ileostomy bag

ibd warrior inner strength confidence ostomy ileostomy bag

ibd warrior inner strength confidence ostomy ileostomy bag

All photography by Timm Cleasby at The Picture Foundry

Love Sam xx

Is the media too embarrassed to talk about poo?

If you read my blog or know me at all, you will know I talk a lot about poo… Some may say I talk shit, but we’ll overlook that!  I started the blog as I wanted to stop poo being a taboo, to talk about Ulcerative Colitis and IBD.  Over 180,000 people in the UK have either Crohns or Colitis yet it is not something discussed very often.  Now I have my stoma, I talk a lot about Ostomies and what its like to have a bag.  Over 100,000 people in the UK have some type of ostomy, yet again as a nation we just don’t discuss it.

Since starting the blog I have been shocked at the amount of readers I have, in September alone I had over 13,000 views of the site.  I receive so many emails, messages and comments about the site and all have been very positive.  I am delighted, if not a little shocked, at how popular the blog has become.  When I share my blog on Facebook and twitter, many friends share it with their friends.  This is lovely and very much appreciated, it really means a lot.

So I thought it would be good to get the blog out to a wider audience.  I tweeted, messaged and emailed a lot of people in the public eye including several magazines and though the feedback I have is good, no one seems to want to publicise the blog or the subject of poo.  It leaves me wondering why this is?  My viewing figures show that people want to read about the subject so why are people in the public eye so shy of promoting health awareness when it comes to poo?  Is it embarrassment? Or do they think that the general public don’t want to read about poo?

poo taboo

Everyone poops

I emailed a LOT of magazines including a journalist who sent a PR request out for ‘women in their 30s who started an inspiring blog this year about a life changing event’.  It seemed perfect!  But though the journalist thought my story was interesting and inspiring, it wasn’t right for the magazine.

Now I don’t want to seem big headed, and I really don’t expect every journalist in the land to raise their hands in awe and think my story is the best thing ever!! But it does surprise me that no one seems to want to cover the subject.  I have asked a number of people who I know, who are in the public eye if they would share the blog on Facebook or twitter and Im not getting anywhere with that either.

I *know* that poo is a taboo subject with some people, but when hundreds of thousands of people in the UK are suffering from the same diseases or living with a stoma, I just want to speak openly and honestly about it.  When you have these things it can feel very lonely and its easy to feel isolated so it was so important to me to get out in the open and start talking.  What I have gone through and what Im still going through is rubbish, but it shouldn’t be embarrassing to discuss it.  Yes, I had a disease that involved my arse and spent ten years with diarrhoea.  Yes, I now have a stoma, I wear an ileostomy bag.  At times I struggle with these things, but talking about it just makes things easier.  I do not need the media to promote the idea that this is embarrassing or not to be spoken about.

poo taboo

Or even worse, promoting ostomies as something disgusting and horrific.  The Cincinnatti Police department recently started an initiative to lower the gun crime rate by showing teenagers photographs of people with colostomy bags to show the possible affects of being shot.  “You’re not killed, but you’re walking around with a colostomy bag and that’s just not the way to get a girl’s attention by limping down Warsaw Avenue with a colostomy bag,” said Lt. Joe Richardson.

Well fuck you Lt. Richardson, I guarantee you that my stoma doesn’t stop me getting attention from the opposite sex. My stoma doesn’t take away my sexuality. I’d rather date someone with a stoma than someone who is ignorant.

Their message was that having a bag is the most unattractive thing that could happen to you. A news report actually said the police showed teens “gruesome photos of people with colostomy bags” It promotes the thoughts that if you have a stoma, you are unattractive, smelly and you should be ashamed of the fact. Myths like these arise because of campaigns like the Cincinnati Police Departments. By portraying an ostomy as a tragic and gruesome way to live out the rest of your life, it continues the stigma surrounding stomas and discourages people with ostomies from speaking about their condition without shame publicly.

Where are the stories of inspiration? Where are the stories of people feeling beautiful, empowered and proud? Having a stoma means you were in a situation that meant this drastic, life altering surgery was your best chance of having a life without pain. For many it is emergency surgery done to save lives. I think people who have been through this deserve to be celebrated not shamed or ignored.

Obviously it would be lovely for people to share my story and my blog, but if you don’t want to do that – share someone else’s, or just don’t be afraid to discuss poo and illness. One thing that many people have told me is that after reading and discussing or sharing my blog, they learnt that someone they know has IBD or a stoma. It surprises me that once you start talking then others feel comfortable enough to share their experiences too.

After I started this blog I got an email from my cousin who told me that he too has ulcerative colitis. He lives quite far away from me and I don’t see him often but I couldn’t believe a family member had the same disease as me and we didn’t know about it! That no one in our families had spoken about it and connected that we had the same thing!

I had a person come up to me in the street and say ‘Sam!!! I have a bad ass too!!!!’ The power of blogging, eh?!!

I write this blog as I want to share my experiences to help others and to get people talking. Please help me do that by sharing this post and letting me know if it helps you or someone you know.

Many thanks

Sam xx

You're so bad ass…

So you can read my IBD story here, I want this place to be somewhere to talk honestly about the disease and how it affects people personally.

Let’s break taboos and speak openly and honestly about how you were diagnosed, how you deal with IBD on a day to day basis and how it makes you feel.  If you have any great IBD jokes, throw them in there too!

I would love for this place to become an interactive site with support and information along with a laugh or two, but I can’t do that alone.

It’s amazing that when you get talking about IBD most people know someone with Ulcerative Colitis or Crohn’s – if this is you or someone you know, please share!

Email me with submissions for your IBD story – tell me about your bad ass!

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