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National Diversity Awards

I feel very privileged to have been nominated for an award at the National Diversity Awards for Role Model for disability.

I am totally overwhelmed and honoured that people have taken the time to vote for me.

Though I do this blog and raise awareness because I want to make a difference and help others, to be recognised for my efforts is really heartwarming.

Voting closes on June 21st and so please take the time to have a look through the nominees and vote for someone! Of course it would be lovely if that were for me, but having seen the other nominees I’m just happy to be put in the same categories as these wonderful folk.

Please do pop over and vote. It takes a couple of minutes.

Thank you!

Sam x

World IBD Day – 19th May 2015

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.

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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!

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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

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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

 

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Charity Haircuts!

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!!

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My boy is raising money for Crohns and Colitis UK

My youngest son Thom is 10 and has beautiful long hair that he has been growing for a few years.  He has decided to raise money for Crohns and Colitis UK by cutting all his hair really short!

I have Ulcerative Colitis and in 2013 I had a colectomy and ileostomy, in 2014 I had more surgery to form a J-Pouch.  It has been a really difficult few years and as family we have had a lot to deal with.

A chronic illness doesn’t just affect the person who is ill, the ripples spread through the family and friends and my children have had a stressful and upsetting time seeing me go through surgeries and treatment.  I am so proud of the way they have dealt with it all and couldn’t be happier that Thom has decided to raise some money for CCUK.

Crohns and Colitis UK provide advice, support and help to the almost 300,000 people in the UK with IBD – they are a great charity and we are pleased to raise money for them.

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A message from Thom

Please donate some money because my mum has suffered with lots of pain with her surgeries.  It’s been very hard for me because I didn’t get to see her much and when I did she was feeling ill and it made me sad.

Im cutting off my long hair to raise some money for the charity that helped my mum so they can help lots of other people too.

Love Thom x”

 

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He is hoping to raise £100 and so please head over to his Just Giving page now and give what you can!

 

Sam xxx

Give someone a #BagofLife

Which would you choose?

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The Colostomy Association are launching a crowdfunding campaign for Stoma Aid.  You can change the lives of thousands of people with a stoma across the world by helping spread the word about Stoma Aid by pledging a Facebook post or Tweet in our Thunderclap campaign.

Millions of people worldwide have a stoma – where an opening has been made on their abdomen which allows waste to pass out of their body. For these people, a stoma bag is necessary to securely, conveniently and safely collect output from their stoma.

However, thousands of people with a stoma across the world are forced to use tin cans, carrier bags and bits of cloth because they are unable to afford the cost of a stoma bag. In Papua New Guinea there are only two stoma care nurses in the entire country; in the Philippines a single bag costs a week’s wages.

For people with a stoma in developing countries, infection and hernias are extremely common as a result of them having to use tin cans and carrier bags. Many people are left unable to work or leave their home because of embarrassment and medical complications.

Each month, tens of thousands of stoma bags are thrown away in the UK as they are no longer needed. We will collect these unused bags and distribute them to people in need in developing countries across the world.

It will only take £22,000 to change the lives of thousands of people across the world. Help us spread the word about Stoma Aid and give someone a #BagOfLife.

Please get involved.

The last two years have been so hard, yet I am lucky enough to live in the UK and the NHS has supported me fully both with the actual surgeries but also with a constant free supply of ileostomy bags and a trained stoma nurse on call.  Sometimes I wonder how different my life would be if I lived in a country where I had to pay for my treatment and supplies.  But then I cannot even IMAGINE how it would be to have no access to ostomy bags, to live in a country where I had to make do with bags, plastic, cans or bottles.

It is heartbreaking to think about the people who are dealing with this every day.  To lose your bowel and have to have an ostomy is tough enough, but to then deal with feeling dirty, smelly and humiliated and have to create a bag out of rubbish is unbelievable.

Please pledge a Facebook message and a tweet.  It takes two minutes and means on 1st May when this campaign launches, it will do so with a huge boost on social media.

 

Thank you

Sam xx

Crohn's and Colitis South Yorkshire Dinner Dance

I am involved in the Crohns and Colitis UK South Yorkshire group and in October this year, we are holding a super exciting dinner dance (ticket info available soon) at Oakwell Stadium in Barnsley.  There will be live music, a DJ, guest speakers, footballers and a raffle (plus extra things to be announced closer to the time).

If any of my amazing followers can help with either free stuff, raffle prizes or donation of time, that would be AMAZING!!

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Crohn’s and Colitis UK​ are a charity close to my heart and we want to raise a lot of money for research and support but also allow people to make connections with others in South Yorkshire and to raise awareness of Crohns and Colitis.

The volunteer group is entirely run by people with IBD or their family members and so as you can imagine, it is difficult when we are all dealing with our own health issues, but we do it to make a difference, so PLEASE get involved.

If anyone can help or donate a prize, then please get in touch.

You can find out more about Crohns and Colitis South Yorkshire on the site here, like them on Facebook, or follow them on twitter.

 

Sam x

 

Why we need to keep talking about IBD

What an amazing year 2014 was for raising awareness of Inflammatory Bowel Disease!! When I was diagnosed with Ulcerative Colitis in 2004, I had never heard of the disease and through the years, so many people I spoke to were completely oblivious to it too.

In 2013, I had a subtotal colectomy and ileostomy formed.  I did what any right minded, modern person does and googled the hell out of it.  I found some great medical advice but very few blogs about IBD.  I talk often about the amazing Inflamed and Untamed, who I fell a bit in love with, and who was the inspiration for me starting this blog, but I could find hardly anything in the UK.

Yet in the past 18 months, there seems to have been a huge uptake in IBD blogs, people sharing their personal experiences of chronic illness of Crohns and Colitis and I think it is bloody WONDERFUL!  It is just fantastic that people facing a life with IBD now have so much information at their fingertips now.  The whole reason I started this blog was to share my stories and experiences in the hope of helping others.

I recently wrote about some of my favourite IBD bloggers, including Thaila Skye and Colitis Ninja, and there are so many people currently working SO HARD to raise awareness, raise money and working to #stoppoobeingtaboo – I raise a glass to every single blogger and campaigner.  We are doing something to make a difference and should be very proud of ourselves!

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So things are good, right? Yes, of course! But they can be SO MUCH BETTER, and we need to all keep talking about Inflammatory Bowel Disease.

Why? Because the more we talk, the more we #stoppoobeingtaboo, the more money we raise for support and research, the better life will be for the 300,000 people in the UK and the 5 MILLION people worldwide living with Crohns and Ulcerative Colitis.

Inflammatory Bowel Disease is not just a poo disease where you get a touch of diarrhoea…

Firstly, there is NO CURE, though there may be periods of remission, these are illnesses that are with sufferers for life.  The medications taken to control the disease control the inflammation include antibiotics, anti-inflammatories, steroids and immunosuppressants.  But the side effects from these meds include nausea, vomiting, heartburn, night sweats, insomnia, hyperactivity, high blood pressure and stunted growth in children. Patients on immunosuppressants are at risk of developing lymphoma, tuberculosis, kidney and liver damage, anaphylaxis, seizures, and serious or fatal infections.

It is also not just about the bowels, IBD can cause issues in other parts of the body, including inflammation of the inner part of the eye, mouth sores, arthritis, osteoporosis, gallstones, kidney stones, skin rashes and ulcerations, blood clots, anemia and several neurological conditions, including seizures, stroke, myopathy, headaches and depression.

People with IBD have an increased risk of mental health issues, from depression to anxiety and stress, patients have to deal with self esteem and body confidence issues.  Fatigue can also be a huge issue which affects every part of patients lives.

20 to 45 % of people with ulcerative colitis and up to 75 % of people with Crohn’s disease will eventually require surgery in the form of colectomy (removal of the large intestine) ostomies, jpouch surgery and more.  This is on top of the multiple hospital visits that IBD patients will often need to deal with the often very painful disease.

 

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Crohns and Colitis UK is a nationwide charity whose mission is to work with all those affected by Inflamatory Bowel Disease, in particular Crohns Disease and Ulcerative Colitis, to achieve a better quality of life, improve services, and ultimately find a cure.  They raise awareness, provide information and support, fund crucial research, and campaign and speak up for change.

I am a huge fan of Crohns and Colitis UK, I’m part of the Organisation Team for the South Yorkshire group and raise money for the charity on my Just Giving page (always open for any spare change you would like to throw their way!)

So please, keep talking, keep reading, keep sharing… IBD is not going away and the more we talk, the easier life is for everyone who has Crohns or Colitis.

Thanks for reading.  Please go take a look at my Facebook page and like, my twitter feed and follow and my instagram and follow there!

Let’s #stoppoobeingtaboo and never stop talking about IBD.

Sam xx

Give us your f**king money…

Oh, apologies, I came over all Geldoff then!!

JustGiving - Sponsor me now!

For the past 18 months I have been raising awareness, spreading positivity and sharing my journey with Inflammatory Bowel Disease.  I do this through this blog, Facebook, youtube and twitter because it means so much to me to be able to share my story and let other people with IBD know they aren’t alone.

In 2004 I was diagnosed with Ulcerative Colitis and in 2013 I had a colectomy, surgery to remove my large intestine, I had an ostomy bag for 8 months and then had more surgery to create an internal pouch.  My 11 year journey has been hard, the last 18 months have been to toughest of my whole life.  I battle every day and my road to recovery is long and arduous.

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Crohns and Colitis UK mean an awful lot to me and so my aim for 2015 is to make as much money as possible for this great charity to get more support for sufferers and give money for research to find better treatment for the future.

I will be doing a variety of things to raise money over the coming months, and if anyone has a spare pound or two to put in the pot at any time, it will be greatly appreciated.

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Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.

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Thousands of you are reading this blog each month and if you could all donate just a pound or two it would make a MASSIVE difference.

So please make a donation, make a difference…

 

JustGiving - Sponsor me now!

Love Sam xxx

Its #PurpleFriday

This week is Crohns and Colitis Awareness Week and today is #PurpleFriday – so don your favourite PURPLE gear and get your selfie on with #purplefriday to help raise awareness of Crohns and Colitis.

Join the event on Facebook or head over to twitter and search #PurpleFriday

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Want to make a difference? Donate here….

JustGiving - Sponsor me now!

Love Sam xxx

Speaking

I did a talk at the Crohns and Colitis UK South Yorkshire Autumn lecture, I joined Mr Brown, consultant and surgeon at Sheffield Hallamshire and Northern General hospitals and we gave a patient/surgeon take on Ulcerative Colitis, surgery and treatment.  I had a brilliant time, the talk was filmed and I will share that with you when I get hold of the final cut.

I received this from Sandra Capewell, Chair of the South Yorkshire Crohns and Colitis group and was blown away.  I work hard to make a difference to the lives of people with IBD and to hear that I am helping just means so much.

 

“I discovered Sam Cleasby in an accidental kinda way and boy am I glad I did!  She’s an extraordinary woman… mother, homemaker, photographer, writer, public speaker, blogger… is there no end to Sam’s talents?  I first started reading Sam’s blog earlier this year and was blown away by her honest, open writing style (it does become addictive!).  She shares everything with her reader – all the ups and downs of her health along with stories of her loving family and views on self esteem – her words take you on a roller coaster ride in your own armchair.  You start to believe you know everything about her!  Sam has such a positive outlook on life – there’s glass half empty people and glass half full people but Sam is in a different league altogether… she’s the glass overflowing person.
Sometimes when you discover something good you want to keep it for yourself but I would have been doing a disservice to many if I had not shared Sam with others…  I asked Sam to give the lecture at the South Yorkshire Crohn’s and Colitis UK (CCUK) Autumn 2014 meeting and she was more than happy to oblige.  The old girl didn’t let me down.  The lecture covered her operations, positive body image and, as always, the continued support of her husband.  Her energy is boundless and her positivity is infectious – it gave people hope, even those experiencing different problems.  Just by being in a room Sam makes people feel happier.  And it wasn’t just me who was impressed with her lecture – here are a few comments from CCUK members:
“Very inspirational”
“The lady advocate for acceptance, self reliance and not giving up was the best speaker on positive behaviour and attitudes I’ve ever heard in my experience of 20+ years of IBD.”
“Interesting and informative”
@so_bad_ass you were brilliant!  You made me and another girl get teary (in a good positive way).  Poo shouldn’t be taboo!  Thank you.”
Read her blog.  Arrange for her to speak to your group.  Follow her story.  You won’t be disappointed!”
– Sandra Capewell (Chair – South Yorkshire Crohn’s and Colitis UK)
If you would like me to speak at your event, get in touch now
Sam x