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World IBD Day 2021 – I am not broken

It is World IBD Day today and to celebrate this day, I thought I would write a little about the journey I am on and have been on for so long. After multiple surgeries and when my body is scarred, in pain and struggling, it is easy to feel broken. But I am not broken. I am a survivor.

I am at art college in Sheffield and my practice this year has all been around trauma, especially the medical trauma I have faced. I decided to do a photography project with myself in the frame. I wanted to show a body that may be in the middle of trauma but is also healing, both physically and emotionally.

Sam Cleasby disability activist and blogger sits naked covering her body with her arms, she has an ileostomy bag and is covered in medical tubing

Wrapped in medical tubing, naked and baring my soul, I am defiant, I am fighting, I am a survivor. There are times when I feel so weak and afraid of everything, but this is my anger, my strength, my fight. My stoma and my scars are the war wounds of my life and I will wear them with pride, they are a visual reminder of the battles I have faced and won. Sometimes, it doesn’t feel like a win, but I am still here and every survival is a celebration of life.

My body has changed so much over the years, I am currently the heaviest I have ever been, I have hernias that jut from my belly like melons, I am covered in scars and take so much medication every single day. It wasn’t easy to shoot this, to shed my defence layer of clothes and sit naked and vulnerable. But I am so glad I did, I feel empowered and beautiful.

Today isn’t an easy day, I am in pain and the meds have kicked in meaning my head is fuzzy and my words may be a little jumbled, but I am here.

I am not broken.

I am a survivor.

Happy World IBD Day,

Peace and love

Sam xx

Feeling like crap but carrying on regardless

It’s ironic that today on World IBD day, I spent the morning at the GP surgery. For a week or so I’ve not felt quite right, increased toilet visits, urgency and a couple of accidents. I have also been struggling massively with joint pain.

I had a Twitter chat with IA Support (isn’t social media brill?!) who suggested possible Pouchitis and recommended I visit the doctors. I put it off as my anxiety over being taken back into hospital kicked in and I wanted to hide from any medical professionals but then yesterday my son held my hand and it hurt so much I had to let go.

I realised it was probably time to call the GP…

So with a temperature, bad joints, increased poos with urgency and blood and feeling like I have the flu I am so fatigued, my dr thinks the same and I have some big boy antibiotics to try and kick this bout of pouchitis in the ass.

Yet it is world IBD day which means though I’d rather be in a duvet den I am actually on the bus into Sheffield ready to go on BBC radio to talk about IBD!

Because though I am a BIG fan of listening to your body and stopping when you need to, today is just too important to me to cancel. I do everything I can to keep raising awareness, to #stoppoobeingtaboo and to help as many people as I can. And I do it all whilst fighting my own battles.

I know today I can reach a large audience of people with IBD, as well as carers, family and friends of those with Crohns or Colitis. And so I will carry on regardless because it means EVERYTHING to me to make a difference.

This shitty disease that keeps knocking me down every time I am feeling better. It has to be for a purpose. I have to believe that my life isn’t a struggle for no reason, and I choose to believe that reason is for this Sheffield lass with a big gob to help others.

And so Ill keep going today, through running to the loo and grinding aching joints and I will make a difference.

(Let’s not even DISCUSS my day trip to London tomorrow for business meetings!!!!)

Luckily I am going on holiday at the end of this week with my lovely Timm and the kids to see my fab in laws in Lanzarote. Not great timing as I’m worried about ruining the trip but at least I have some down time and can relax and rest.

Love 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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