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World IBD Day – 19th May 2015

18th May 2015/2 Comments/in Blog/by sam

I’d like to ask all you readers who don’t have IBD a question. Before you read my blog, did you know anything about Crohns Disease and Ulcerative Colitis? And a second question, since you shared my links or spoke about this site, how many people you know have admitted they suffer with Inflamatory Bowel Disease?

People tell me that my site and other IBD blogs have made them realise that they have friends, family member and colleagues who have Crohns or Colitis and that is why I keep writing! The more open we become about these types of illness, the better we can support those with IBD. One of the toughest things to deal with is the isolation and embarrassment, and that is why my aim for this blot has always been to #stoppoobeingtaboo.

Every 30 minutes, someone in the UK is diagnosed with Crohns Disease or Ulcerative Colitis and that is why awesome charity Crohns and Colitis UK are using World IBD Day on 19th May 2015 to raise awareness and enable more patients to access the best care possible. With at least 300,000 people in the UK living with Crohn’s or Colitis, this means 1 in 210 people are living with these unpredictable, life-long and potentially life-threatening conditions.

This is why I am proud to support Crohns and Colitis UK and proud to share my experiences, make a difference and #stoppoobeingtaboo all over the world!

On World IBD Day, Crohn’s and Colitis UK are launching ‘My Crohn’s & Colitis Care’, a patient guide to the top 10 essentials of a good IBD service. This practical resource has been developed with the support of patients, healthcare professionals and health organisations, and is the patient companion to The IBD Standards². The aim of the new guide is to empower people with IBD to get the best from their local health service by working in partnership with their healthcare team.

So what can you do?

You can wear purple and ask others to do so too and make a donation to Crohns and Colitis UK either by text. You can donate any amount, to donate £5, you would Text PURP19 £5 to 70070 Alternatively, you can make an online donation at justgiving.com/crohnsandcolitisuk

I thank every one of you who reads my blog, you are amazing and if every one of you could donate just £1 it would make a HUGE difference to the lives of IBD sufferers. If you can’t manage to donate then please just share these posts and get talking, you can make a difference by just speaking out and helping me to #stoppoobeingtaboo

Stay purple!

Sam xxx

Charity Haircuts!

15th May 2015/3 Comments/in Blog/by sam

As you may know, my son Thom and his friend Sonny decided to have their long beautiful locks chopped off to raise money for Crohns and Colitis UK, a charity that has supported me during my illness, surgeries and recovery. Well, the day arrived and thanks to the wonderful Savills Barbers in Sheffield, the boys got some amazing haircuts and I am over the moon to announce that they have raised £381.22 (there is some more to come that hasn’t been put in the account yet!)

I want to thank the boys for coming up with the idea and going through with a huge change to make a difference to other people. I am so proud of them both and think it is bloody wonderful that two ten year old boys are thinking of others. And thank you so much to Joth and the boys at Savills for donating their time and talent to make our boys look so handsome.

If you have already donated, THANK YOU! If you haven’t then you still have time to add to the account. Every pound counts so please consider donating.

I photographed the boys big day, enjoy!!

Happy birthday to my Jpouch!

14th May 2015/4 Comments/in Blog/by sam

I can’t believe my jpouch is one year old today!!!!

A year ago on 14th May 2014 I had just been through a really tough surgery. I had woken without my Ileostomy bag and was facing my first day for nine months without pooing through my stomach!!

I was exhausted, terrified and in an awful lot of pain. I had a large tube in my bottom that would have to stay there for ten days and I also wouldn’t eat for almost two weeks.

Those first few days were bad. The pain, hunger, fear and emotional turmoil were so tough. To be honest the first few weeks were really awful, I was incontinent and taking so many drugs and learning to live with a pouch.

For the first few months I asked myself on a daily basis what had I done?! I had been warned that the recovery was brutal and would take 2 years but it was worse than I could imagine. Everything seemed so much harder than with my stoma and I doubted my decision all the time. Learning to use my pouch was like a toddler learning to use their bowels. For the first weeks I had to go to the toilet every two hours, even through the night, setting an alarm. This is because my pouch was made in a two step procedure, step one was colectomy and ileostomy and step two was pouch formation and reconnection – some people have the operations in three or more steps with the pouch being formed but not connected and then another surgery to connect it up a few months later.

The two hours was stretched to three and then four before the long period of trying to ‘hold it’ for as long as possible to train the pouch to hold more stool and teach my body to go for longer periods between toilet visits.

The past year has been a huge learning curve. There have been really difficult times where I have barely left the bathroom, there are times where I have had pouchitis, tummy bugs, butt burn, incisional hernia, surgery and so much more. I still have ‘flare ups’ where my joints are so painful and I feel exhausted. The fatigue hits hard at times.

But I can say, one year post surgery that I am really glad that I went ahead with the surgery. My life is improving all the time, I can go longer between toilet visits and I am learning what food I can and can’t tolerate. I rarely have accidents and I do feel that my health is improving all the time. There are times when I don’t even think about toilets!!! It has been YEARS since I could say that!

So happy birthday to my jpouch, it has been a crazy year! Here’s to the next one!!

Sam xx

Happy Anniversary

7th May 2015/4 Comments/in Blog/by sam

Today is our 11th wedding anniversary!

We married in Las Vegas in 2004 and renewed our wedding vows last year and I couldn’t be happier.

Life isn’t always plain sailing and we have had our moments of struggle, but we came through everything stronger than before and that Cleasby bloke and I, when we are together, we are a force to be reckoned with.

Over the last 2 years of surgeries, recovery and change, Timm has been my rock. The one person I can tell it all to, the one to hold my hand, to make it all better and to love me harder than ever before. He became my carer for a while and did it with love, sensitivity and respect.

People tell me I am strong. But I am only strong because Timm is my roots, he holds me tall and supports my growth.

When life is good, he walks by my side, both of us smiling into the sun. But sometimes life just gets so heavy, my shoulders aren’t broad enough to carry the weight, that is when he steps in and scoops me up. When I need him to, he will carry the weight of both of us and does so with a smile. Then as it gets easier, he sets me down and we carry on our path together.

I just hope that when he needs me, I will carry him in the same way.

Happy anniversary to my favourite person in the whole world.

Sam x

So Bad Ass talk at Seven Hills WI

5th May 2015/1 Comment/in Blog/by sam

I did a talk at the marvellous Seven Hills WI in Sheffield last month about self esteem and body confidence. It was fantastic to get to talk to such wonderful women and it was filmed so please do take a look. I am a little bit sweary so not suitable for younger viewers. It is 45 minutes long, so grab a brew and take a listen.

If you would like to book me to talk at your event, get in touch now.

Love Sam xx

If the Kardashians are your role models, then you have problems

29th April 2015/4 Comments/in Blog/by sam

I do not watch the Kardashian telly programme, I saw it once and Kanye West was ordering the Kim one to lose weight and only to wear clothes approved by him. I thought it was a parody of an abusive relationship but apparently it is all for reals…

I try to avoid these Karkrashians as much as I can, but my twitter, Facebook and newsfeed is filled with their boring stories of how much they weigh, how big their arses and lips are, who they are dating and what tat they are promoting.

And they are Karkrashians… that car crash TV that you know you should look away from but your eyes are drawn towards the drama and chaos that surrounds them. I bet they are actually nice women, but we don’t ‘know’ any of them, all we see is the brand that they push into the limelight.

A story popped up today about the Khloe one who has posted a photograph of her weight on Instagram and how she is promoting dangerous ideals to the kids who look up to her as a role model. There are two things about this story, one… no shit!!! Is anyone surprised that these women whose ‘talent’ is their looks are promoting unhealthy body issues? Secondly, if you or your child have a Kardashian as your role model then your problems run deeper than her weight.

The family’s fame comes from the fact that one of them made a sex tape. Let that sink in. Your child’s role model is a woman whose notoriety comes from her having sex on camera. Or even worse, her sisters who are using their sibling’s sex tape to promote themselves. Their commodity is their looks and their family wealth and they have used these things to promote themselves into ‘business’. Fair enough, but that doesn’t make them good role models.

If you must watch the show then I suppose that is up to you, though I can name a million ways that are a better use of your time. But having them as role models for yourself or your kids? Fuck that!

Want to idolise some amazing women?

What about Emma Watson? UN Women Goodwill Ambassador and kick ass feminist, she is an actress who earned more before her 18th birthday than the rest of us will in a hundred lifetimes yet she strives to make a difference and use her stature for good.

Jennie Price is the CEO of Sport England and brought us the This Girl Can campaign inspiring women to get exercising and take control of their health.

Camila Batmanghelidjh has an awesome name… But she also founded Kids Company providing practical, emotional and educational support to the most vulnerable and deprived children in the UK. (Note to add: I would rather dress like Camila than any of the Kardashian women… totally going to start wearing turbans!)

Baroness Doreen Lawrence took the most painful experience anyone can imagine, losing a child and used it to make a positive difference in the UK. She founded the Stephen Lawrence Charitable Trust and received an OBE for “services to community relations”.

I know people say that these shows are light entertainment and that people like me shouldn’t get so wound up about them, but when they are filled with really damaging messages and their stars are becoming role models then it does concern me. We are a famous for nothing generation with so many ‘stars’ who have never done anything worth applauding. I am not a huge fan of some pop stars but at least I respect that they work really hard and have a talent. Footballers may be overpaid (in my opinion) but their role model status is based on skill, training and years of dedication.

I know this is a bit ranty but seriously people, there are so many people doing beautiful, amazing and wonderful things to make the world happier, kinder and more filled with awesome. This kind of mind numbing telly filler is wasting your amazing life. Go read a book, watch a ton of TED talks, go to local events, spend a night playing cards with your favourite person, take a walk, hang out with your besties, play board games with the kids…

We are here once and for a very brief time. Live hard, love a lot and laugh every day, fill your life with wonder and brilliant things.

Sam xxx

"She has a prosthetic leg anyway…" Disability shaming

23rd April 2015/15 Comments/in Blog/by sam

The Avengers – Age of Ultron press tour has kicked off and some questionable comments from Jeremy Renner and Chris Evans are overshadowing the film itself. When asked about Scarlett Johannson’s character the Black Widow they called her a “slut”, because this is acceptable right?

These actors discussing what is essentially a children’s movie calling a female character a slut and a trick shows the levels of sexism in our current climate. It has also been discussed that the female characters of many films are not promoted in the merchandise.

Sexism is rife in Hollywood and has been written about a lot but one comment that stood out for me was when discussing how the female character Natasha Romanoff has a romance with someone other than him, Jeremy Renner says;

“She has a prosthetic leg anyway” The inference being that he wouldn’t want to date a woman with a disability.

*SLOW HAND CLAP FOR RENNER*

They may be joking but this easy sexism and ablism has an impact on how society sees women, especially women with a disability. His laughter at the idea of having a relationship with someone with a prosthesis is offensive and reinforces old fashioned and ridiculous ideas that people with a disability can’t be a sexual being or be found attractive.

Watch the interview here…

Well screw you Jenner… Living with a disability is fucking hard and having over paid, ignorant men openly mocking it is wrong. For those reading this with an illness or disability, don’t let it make you sad, allow yourself to get angry and speak out. More and more I find myself championing campaigns for people with disability and I think we should call out people who use casual ablism, who make disability the butt of their jokes.

My campaign #MoreThanMeetsTheEye is about bringing disability into the public eye, about encouraging kindness and openness, about getting people to open up and talk to reduce stigma and getting society to understand.

I blogged last week about how I had been called out on “sexualising disability”, I argue that I am simply normalising illness, my sexuality is a part of me and my illness doesn’t stop that. At a talk I did for the Seven Hills WI, a lady came up to me afterwards and said “you had your colon removed not your clitoris”, after doing a big spluttering laugh I totally agreed!

But society doesn’t seem to want to see people with disabilities as sexual beings. Perhaps it makes them uncomfortable? I came across a great bloke on twitter called Andrew Morrison Gurza who runs a campaign called #DeliciouslyDisabled getting people talking about sex and disability. It’s amazing and I implore you to go follow him on twitter now!

The more we allow these sorts of comments to slip, the easier it is for society to make people with illnesses and disabilities feel like outsiders, to isolate them and create an environment where it is ok to mock those different to us.

I’d love to hear your thoughts!

Sam x

Sexualising disability or normalising life with an illness?

14th April 2015/30 Comments/in Blog/by sam

As my photographs of an old photo shoot with my stoma have gone viral last week, I have been subject to a few comments about sexualising disability (and some just telling me that ostomies are gross and I should put it away, but that is a WHOLE other story!!!) and I wonder am I guilty of that?

The short answer is fuck yeah! And you know why? Because my sexuality, my femininity and the person I am didn’t get removed along with my colon. The long answer is about how disability is seen in our society and also how women are viewed in society.

In 2013 when I had my colectomy and an ileostomy formed, I did what we all do in times of uncertainty and I googled it. What I found were some great charities such as Crohns and Colitis UK and I A Support, but what I wanted was a personal story, something that I could relate to.

Looking at images was even worse, there were either terrifying images of stomas that were infected or prolapsed or photographs of smiling old ladies… Nothing that I saw helped me, it frightened me, upset me and made me feel that life as I knew it was over.

And that is why a month or so after my surgery, I made the decision to have some photographs taken. It helped that I lived with a super talented photographer! I wanted some images that represented ME. The person I was before and the person I wanted to find under my scars, dressings and emotional pain. I knew I was under there somewhere, and the camera helped me find myself again.

When I saw the photos I was so overwhelmed. I saw some great images of me. And then my ostomy. It made me realise that I was still me, that my stoma was such a small part of me and all the other characteristics were still there. It empowered me to speak out more, to share my photos and share my story. And to this day, I tell you now, I am DAMN proud of every one.

People like to say that I did this for Facebook likes, for twitter followers or to boost my blog stats. And I suppose they are right. I share all my images because I want to reach as many people as I can who are feeling lost in their illness, who feel that the world has forgotten who they are and only sees their disability, to the people who want to know that life goes on after ostomy surgery. I want to help as many people as I can and if sharing my images does that then bloody go me!

I would also like to point out that there are HUNDREDS of photos on this site and only a handful are what anyone could consider ‘sexualised’. I wouldn’t say I sexualise my disability, I would say I normalise it. I show photographs from every part of my life, there are photos of me playing with the chickens, hanging out with my kids, with my husband, my mum, in gym gear, at the beach… I show all parts of my life because my illness and my disability do not change all those parts of me.

I know that my audience feel that I help raise the profile of the diseases, that I support many and that I inspire others to speak out and to be brave. I know this because they tell me so and I have to laugh at those who think this is simply an ego trip or a numbers boost!!

I don’t prescribe getting your hoo-hoos out to anyone, I do not suggest that taking your clothes off for a photograph is for everyone, in the same way that body building, dancing or wearing a bikini isn’t for everyone. What I do talk about it self love. I talk about body confidence and in taking positive steps to you living a happy, fulfilled life. The path to this is different for everyone, for me as a photographer and a photographer’s wife it was through imagery. I would have done EXACTLY the same shoots beforehand.

If I choose to show my sexuality alongside my disability and you don’t like this, then I suggest you click away, go look at a different site, or even better go read a book, talk to someone or make someone happy! If my sexuality makes you feel uncomfortable, then please step away. It’s fine, honest!

But don’t slut shame me. Don’t belittle my plight to make a difference in the world by judging me on the images that show my undercrackers. It is so easy to use a woman’s body against them, to suggest that any showing of flesh is in some way a dart in the heart of feminists everywhere, to imagine that my professionalism is affected in any way by an image that shows my stoma.

I am a feminist in that I believe in equality for men and women, it is odd isn’t it that when we see the semi-naked photographs of men that there is no backlash, no one suggesting they are belittling the campaign by showing their bodies, yet when women do it, we are subjected to judgment and mocking.

The facts are that I am a woman. I have a stoma. And I live in a country where I have free speech and the freedom to show images of myself.

The facts are that I make a difference. I help many people and I do it in my own way.

The facts are that I am so bad ass and I will carry on raising awareness, supporting people and kicking ass!

Love Sam x

#stomaselfie – going viral again!

12th April 2015/40 Comments/in Blog/by sam

I am very proud of the photographs I had done with my stoma and ileostomy bag and last week, they went viral! Appearing in the Metro, Daily Mirror, BT online and The Independent as well as media outlets around the world including lots in Scandinavia, my photos went a little crazy under the hashtag #stomaselfie.

The purpose of the photographs were to lift the veil, so to speak, on what is under the ileostomy bag. When I was in hospital before my surgery to remove my colon, I googled images of stomas and I was horrified, all the images were very medical, many stomas that were having issues with prolapse or infection and my fear was intensified.

What I wanted was to show stomas in a way I hadn’t seen before. To show that my stoma didn’t remove me of my femininity, sexuality or who I was. I wanted to show the world that it was nothing to be ashamed of, that I was proud of my ostomy and that it really wasn’t as terrifying as I had once imagined.

I have received many messages of support of these photos, telling me that I am helping to reduce the taboo and stigma. For that I am very proud and though I was afraid to first show these, I am happy to know that by sharing the images, that I am making a positive impact to the lives of those with stomas.

I know it is a little controversial and some people don’t think I should be showing my stoma, some think it is akin to photographing your bum hole and so it is inappropriate. Some think it is just a little gross… But the truth is that millions of people worldwide live with a stoma, and if me showing these photographs help just a few of them, then I am happy.

Unfortunately, some media outlets have got the information wrong and say I have crohns, a colostomy and that these images were inspired by Bethany Townsend’s bikini shots, the truth is I have Ulcerative Colitis, I HAD an ileostomy (I now have a jpouch) and these shots were taken and shared in October 2013 well before the shots of others with ostomy bags went viral!

Thank you to the Metro, Daily Mirror, BT.com and especially The Independent for sharing the photos and spreading awareness, pride and support for people with ostomies around the world!

Unfortunately, there have been some nasty comments, but I know that putting yourself out there with images like this will always divide opinion. I know that showing my stoma will bring out the worst in some, but it is so important to share to try and change the opinions of those who think it is “disgusting”. I receive thousands of amazing comments filled with lovely words and I know I make a difference. I don’t do this to get attention or for likes on Facebook!! Hahaha!!! I do it to make a difference and I believe that I do.

Nice, huh? But then you get comments like this that make it all ok…

“Certainly brave, and since the photos have popped up online I’ve shown my son – 4 years old why he has such a large scar across his tummy and what used to be there. It’s not something I’d ever Google to show him, but because it had popped up I thought it would be helpful for him to see and understand why it’s there”

“The whole point of these photos is to empower and take away any found shame about having a stoma! People will never ever feel the depth of pained shame to having a stoma and just how much it affects people’s lives and how it affects confidence in relationships and families. Complaining about such fickle things as people’s levels of decency is, to me, insulting! … and above all ignorant!”

“a stoma is like having an artificial leg you would never turn round to someone on the beach and say eeww put that away…I’ve not long had mine and at the start I was devastated as I had always been aware of my figure but my stoma saved my life and when anyone says anything negative about it…I just think I had hours to live and that was my only option…it saved my life”

“Amazing wonderful beautiful strong brave are just a handful of words I would use for these people. Much more than I ever will be! Some of the comments on here are just disgusting, but I dont expect anything less from uneducated morons who havent got a slightest clue on what a “real” issue really is! The models in these photos are heroes in my eyes!”

You can see more of my shoots here, here, here and here. All photos are by Timm Cleasby at The Picture Foundry and are copywrited, please don’t use my photos without permission as it makes us a bit sad. Get in touch and we can discuss usage terms.

Love Sam x

Appointment update

10th April 2015/4 Comments/in Blog/by sam

Just wanted to update you all on yesterday’s hospital appointment after my hernia surgery.

Mr Brown is fairly sure this lump is a seroma, a gathering of fluid. To confirm this I am having a scan next Friday and if it is fluid they will drain it with a needle.

If it is anything else we will deal with it as and when!!

Thanks for all the lovely messages yesterday. I am feeling quite upset at another setback but my doctor did say “after all you’ve been through, this is nothing!!”

I’m trying to stay positive. Something’s the only way to deal with that is to take one appointment at a time. So I’m not looking past the scan right now. Thinking of needles and drains or infections or hernias is just too much to bear and so I need to keep focussed on what is real, what is planned and what I know for sure.

Thanks again lovelies

Sam xx

World IBD Day – 19th May 2015

Charity Haircuts!

Happy birthday to my Jpouch!

Happy Anniversary

So Bad Ass talk at Seven Hills WI

If the Kardashians are your role models, then you have problems

"She has a prosthetic leg anyway…" Disability shaming

Sexualising disability or normalising life with an illness?

#stomaselfie – going viral again!

Appointment update

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