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European Crohn and Colitis Organisation and Boehringer Ingelheim

I was very pleased to be asked to talk at the 12th congress of the European Crohns and Colitis Organisation in Barcelona.  I will be attending next weekend and speaking with a panel of people from around the world about what life would be like if everyone in the world had IBD.

 

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The Boehringer Ingelheim group asked me to be part of their innovative talk hoping to encourage a new way of thinking for medical professionals and pharmaceutical companies.  They hope a discussion where the patient is put first will make people consider what it would be like if IBD wasn’t an illness but the norm.

What would treatment look like? How would buildings be designed? What would work, social and personal life be like for the world? With this thinking, perhaps patients with IBD will be more at the forefront of medical professionals minds when they are treating us.

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I love public speaking, it gives me the opportunity to use my experiences to educate others and to offer support to members of the public.  This event is a little different as it is aimed at medical professionals, I hope by taking part that I can help to shape the way doctors, surgeons, nurses and health professionals look at their future IBD patients.  And for that I feel very grateful, honoured and proud.

 

Sam xx

So Bad Ass goes to Parliament

On 4th November this year, I had the honour and privilege of going to Parliament with Crohns and Colitis UK to speak to MP’s and Peers about life with IBD.  It was a fantastic experience that I will never forget and I hope to repeat again.

Raising awareness and being a health advocate is everything to me and my ability to share my thoughts through this blog, writing for other publications, writing my book and speaking at events all over the UK is something I am hugely passionate about.  I LOVE what I do and I am so proud of my work.  But going to speak to the people in power, those who run this country, who I can educate to then help thousands of their own constituents is just amazing.

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I love the work of Crohns and Colitis UK and I am so proud to volunteer for them both on a local and national level and it was just a fantastic event to be part of.

I was quite unwell during the lead up to this event and on the day I was struggling with pouchitis but decided to push through as it was so important to me.  I met the amazing Carrie and David Grant who are ambassadors of the charity and got to hang out with fellow IBD activists Charlotte Guinea and the Get Your Belly Out team.  What was very interested and helpful was to speak to all these people about my own personal experiences and learn about theirs.  Both Carrie and Charlotte also discussed how they were currently unwell and we had a good old whinge about how IBD sucks.

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I spoke to many MPs from all over the country and was over the moon to hear that over 80 MPs and peers came through the doors to learn more about Crohns and Colitis Care; the newest information pack produced by CCUK to help patients understand what they have, what they are entitled to and how to get the best care.

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The people I spoke to seemed genuinely interested and cared about their constituents, they asked many questions and we discussed how they can help.  A big thank you to Sheffield MP Harry Harpham, who has been in touch through email and though he couldn’t attend on the day as he had previous engagements in Sheffield, sent his parliamentary researcher to find out more.

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What struck me was the motivation and strength of the volunteers and ambassadors, as we talked about our current illnesses, medication and treatments, I was very aware of the sheer heroism it takes to attend these events and raise awareness when you feel so dreadfully ill.  Ironically all three of us (Carrie, Charlotte and myself) all ended up back in hospital within a week of this event which gives you an idea of just how poorly we are.  But when you look at these photos, it is easy to just see 3 smiling women.  The reality is that we are 3 women who despite our illness, keep striving to make the world an easier place for those who follow in our health footsteps.

sam cleasby so bad ass parliament ibd blogger

I hope that all those MPs and Peers really took on board what I, and other ambassadors, shared with them.  I hope they learnt something and will know better how to help and support their own constituents and how to signpost them to Crohns and Colitis UK.

sam cleasby so bad ass parliament ibd blogger

I know that on that day I carried in my heart the voices of all of you lot, your words of pain and struggle rang in my ears as I spoke to MPs, your concerns, your anger, your needs were voiced through my mouth and I hope I did you all proud as an advocate for all those with Crohns and Colitis.

 

Sam xx

Why you should go to support groups

I do quite a bit of public speaking about life with IBD, stomas, jpouches and also self esteem and body confidence. I also volunteer with Crohns and Colitis UK and IA Support at events all over the UK.  And the one thing that tends to be the same at these events is the lack of younger people attending and I think it is a real shame.

I understand that there is so much support online nowadays, and I also get that going to a support event in person can be a terrifying experience, but I do believe that person to person support, that real life connection is irreplaceable by chatting online.

When I had my first surgery and had my ostomy, it was suggested that I attended a Stoma Open Day at the local hospital to meet other local ostomates and see all the different products available to me.  I went along and entered the room, so nervous that I was shaking.  I nearly turned back a few times, the idea of going into a room of strangers was almost too much to bear.

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I think I was the youngest person there by 20 years.  That sucked.

As I walked around the stalls I was asked twice who I was with, the assumption being that I was there to support an older relative.  It really dented my confidence and reasserted this awful feeling that I had an “old persons disease”.

It made me realise that it is a vicious circle.  A younger person attends these events and feels out of place and so doesn’t return, meaning the next younger person who arrives feels exactly the same.

This is why I feel the need to speak out, make a call to arms, to ask all you younger folk (and by younger I mean under 50!) to try out an event local to you.  It isn’t easy but I assure you that having attended many over the past two years, the feeling I walk away with after spending time with people who know exactly how you feel, after talking openly to people about things you may shy away from with your friends and family, that feeling is good.  It’s inclusive, it’s helpful.

That feeling I had at the first event made me want to make things better for others.  This blog, my talks, the things I discuss in the media is all part of a plan to raise awareness and make people be more understanding that chronic illness can strike at any age and that we need more support for all.

I will be at the Stoma Day this year as a volunteer for Crohns and Colitis UK South Yorkshire group, so if you are in the area, please come along, you are guaranteed to see at least one smily face and I would love to chat and help you make other connections.  It is terribly advertised and so you may not even be aware of it.

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It is on 5th October 2015 from 10am – 3pm at Hillsborough Arena in Sheffield and is organised by Sheffield Hospitals.  If you have an ostomy and live in South Yorkshire, do consider coming along.

As I said I volunteer for the South Yorkshire group of Crohns and Colitis UK, we are a team of volunteers who offer support to sufferers and their families, do fundraising and generally getting the name of CCUK out there, especially in South Yorkshire. The team can take up as little or as much time as you’re able to, we’re grateful for any help. So if you feel like coming along, even just to see what we’re about, then we’d love to see you.  We are having a meeting this Thursday 17th September in Sheffield, all are welcome if you are interested in helping out or hearing more.  You can find the event here.  We are ever so friendly and we are a laid back group so please think about getting involved.

I do a lot of this stuff because I really do care, I want to make a difference.  I honestly believe that through speaking out and talking at events, we can help all others who follow in our path.  What we go through as people with IBD is tough, we fight an illness that tries to ruin every part of our lives and the worst thing is the strangling silence that wraps itself around our throats and stops us speaking out.  Meeting others who are going through the same thing makes life a little easier, it stops that feeling of isolation, of feeling of being alone.

So think about it, have a look at local events to you and consider attending just one.  If we all do that, imagine the army of support we could create!

Helping others and helping yourself.  Get involved.

 

Sam xxx

Pelican Live Your Life Roadshow – Preston

I will be talking at the Pelican Live Your Life roadshow in Preston on Sunday 5th July talking ostomies and body image.

At Bartle Hall from 11-3, Come along and meet the Pelican team, chat to nurses, and attend some great talks. It’s a must for people with an ostomy, carers, family and friends. I’ll be doing my talk once in the morning and once in the afternoon so if you’re near Preston, do call in.

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Feel free to drop by with your family and friends, anytime between 11am and 3pm. If you have any queries, or would like to confirm your attendance, you can contact:

Email – ku.oc1487549274.erac1487549274htlae1487549274hnaci1487549274lep@g1487549274nitek1487549274ram1487549274
Freephone – 0800 318 282

The guys at Pelican are super friendly and so easy to talk to, it’s well worth getting in touch.

Sam x

Rosie Batty: Silencing those who speak out

In February 2014, 11-year-old son Luke Batty was murdered by his father, Greg Anderson at cricket practice in Melbourne, Australia.  It made worldwide news and society was shocked and appalled at the violent attack from a father towards a son.

His mum Rosie Batty became an advocate for female domestic violence victims and campaigner for making changes to government processes relating to the protection of women and children and she established the Luke Batty Foundation and Never Alone to assist women and children impacted by domestic violence.  Her courage, strength and bad ass spirit helped her to become the 2015 Australian of the Year.

She speaks out at events and to the media about the horrific experience of losing her son and is a domestic violence campaigner.  She uses her life to bring the conversation of domestic violence into the limelight and I think her selfless efforts are inspirational.  She is using her pain from an experience that many couldn’t even imagine to make a positive difference to others.  What a hero!

So why is Mark Latham, a former Prime Ministerial candidate trying to shame her into silence?

In his column for the Australian Financial Review, Mark Latham said of Rosie’s public speaking events;

“How did Batty immerse herself in such company, wheeled out at business functions to retell the story of her son’s murder in February 2014? There was a time, in the dignity of working class life, when grieving was conducted in private”.

How dare he!

What Rosie has done isn’t about a lack of dignity or respect to her son, the fact that this man feels he can silence a woman says more about him than her.  Her decision to speak out and make a difference is saving lives.

With her words other woman may find the strength to ask for help, mothers may leave abusive partners for her children as well as herself, she is teaching society about the warning signs and is publicly telling the government that more support is needed.

But when Mark Latham comments saying that this is a ‘private issue’ and ‘undignified’ he is creating a conspiracy of shame and silence and putting lives at risk.

This story struck a chord with me as I write about illnesses and treatment that can be embarrassing and ‘impolite’ to discuss in public, I spend most of my life either writing or speaking about poo and have faced others who believe it is undignified and should be kept private.  I never thought as a child that I would have a career in talking about poo, but this is where I am.

The experiences of Rosie Batty are incomparable, I am not putting losing a child in the same league as having an illness or surgeries, but the act of speaking out about something that others believe should stay private is similar.  I write, I speak out, I do all this to make a difference and help others.  I use my pain and suffering to reach out to those who are suffering and to break the taboo of embarrassing illnesses in the same way that Rosie uses her pain to help victims of domestic violence.

And so to see a fellow ‘sharer’ be shamed and silenced by a politician is just abhorrent.

When you go through a terrible experience, whether it be loss, illness or a life event that just knocks you for six, the shock and pain can make you feel so isolated.  It can feel like your life is crumbling and everything has changed forever.  How each person deals with that pain is personal and unique.  Some will keep it private and deal with it quietly and on their own, others may access the support of a wider circle and some may choose to use the experience to make a difference.

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There is no right way and people like Mark Latham don’t have the right to judge, shame and silence.

That judgement isn’t just affecting one person, the ripples spread so much further and you can hurt so many more.  Encouraging a culture of silence affects vulnerable people who need support and cements the shame and embarrassment into a person’s mind. I strongly and passionately believe that we should not fear speaking out about issues that are uncomfortable.

It takes courage to write or speak about things that are not socially acceptable or polite to discuss in public.  No matter how confident I may seem, every time I hit ‘post’, I fear the response I may get.  I worry that it will change the way people see me, I worry people will laugh at me or judge me.  But I keep doing it because I know I am helping, I know I am making a difference.

Rosie Batty is a true hero.  She is doing something amazing and helping so many when I am sure there are times when it is the last thing she wants.  I am sure she would give it all up in a second to have her boy back.  I am sure she is privately grieving and dealing with this in a personal way.  Her public persona and work doesn’t hinder her private grief.  She is amazing.

Please share this post and support Rosie using the hashtag #IStandWithRosie on Twitter.

Sam x

 

 

Pelican Healthcare Live Your Life roadshow – Birmingham

I’m thrilled to let you know that I will be at the Pelican Healthcare Live Your Life roadshow this Saturday in Birmingham.

From 10.00 until 3.00pm at Millichip Suite, West Bromwich Albion Football Club

The Hawthorns, West Bromwich, West Midlands, B71 4LF

I will be doing a talk in the morning and afternoon about self esteem, body confidence and ostomies.

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There will be tons of support and information and other interesting talks through the day.
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Feel free to drop by with your family and friends, anytime between 10am and 3pm. If you have any queries, or would like to confirm your attendance, you can contact us by:

Email – ku.oc1487549274.erac1487549274htlae1487549274hnaci1487549274lep@g1487549274nitek1487549274ram1487549274

Freephone – 0800 318 282

Register now to receive a free goody bag on entry!

I look forward to seeing you there! If you live too far away do check out the Pelican website for details of other roadshows.

Sam

So Bad Ass talk at Seven Hills WI

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

Happy International Women's Day 2015

Hope you have all had a fantastic Women’s Day 2015.  I have had a weekend with friends and family and LOVED seeing my Facebook and Twitter feeds filled with wonderful stories of inspiring women and feminism.

I thought I would share my talk from last year’s International Women’s Day in Barnsley where I spoke about living with my ileostomy and how I overcame the massive changes that surgery brought me and how it affected my self esteem and body image.

 

Much love

 

Sam x

Talking ostomies and self esteem – Pelican Healthcare

I was invited to the Pelican Healthcare Life Your Life roadshow in Cardiff to talk about living with an ileostomy and self esteem.  It was a great day, there was a ton of information stalls and products as well as dietary advice, a reflexologist, the Get Your Belly Out team and lots more.  The super friendly team at Pelican Healthcare were on site to welcome the ostomates, family and friends and to chat and guide them through the day.

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My talk was filmed and you can take a look here… Enjoy!

 

If you want me to talk at your event, then get in touch!

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Pelican Healthcare provide ostomy products to people all over the UK, as well as giving advice, support and developing a community for people with ostomies. You can like them on Facebook and follow them on twitter.

Sam x

Pelican Healthcare Live Your Life Roadshow

Do you live near Cardiff and have an ostomy? Pelican Healthcare are holding their Live Your Life Roadshow on Saturday 24th January at Miskin Manor and I will be there, giving a talk about body image, self esteem and my time with an ostomy.

The Pelican team will also be there, along with surgeons, doctors, nurses, Bowel Cancer UK and Thrive Magazine.  There will be talks, Q&A’s, craft stalls and a ton of information and support.  The Roadshow runs from 10am till 3pm and there are free buses running from Royal Glamorgan, Prince Charles and Ysbyty Cwm Rhondda hospitals throughout the day.

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I have done talks up and down the UK about living with Ulcerative Colitis and my journey through illness, medications, surgeries and recovery.  I do this because I believe in talking openly about these issues to help others on their own journey.  I love writing for both my blog and also for other websites and magazines, but I really love getting out and talking with members of the public.

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So if you are about on the 24th, please come and listen to my talk but I will also be about all day so come say hello and tell me your IBD story.  I know that it can be intimidating to go along to support and information days, it can feel like it isn’t for someone like you, or it can be difficult to go on your own.  But know that it will be a friendly, open and welcoming day and there will be plenty of friendly faces.

It is my first time in Wales and I can’t wait! Look out for me and if you are feeling a bit nervous, come hang out with me and we can talk poo!

Hope to see some of you real soon, please share with anyone you think would benefit from the roadshow.

Till then you can follow me on Twitter, like me on Facebook or check out my photos on Instagram.

 

Love Sam xx