Sam Cleasby – The Bad Ass Queen of IBD, Invisible Disability & Body Positivity

If you have Inflammatory Bowel Disease or an ostomy then you probably know who Sam Cleasby is. Sam is the owner of the hugely popular ‘So Bad Ass’ website and one of the most influential voices for Crohn’s and Colitis sufferers. After being diagnosed with ulcerative colitis in 2003 and receiving a sub total colectomy and ileostomy in 2013, Sam started ‘So Bad Ass’ as a way to tell her story and raise awareness of IBD.

I first came across Sam as a member of the 4am club. I was going through chemo radiation at the time and struggling with my treatment. I was also adjusting to my new life with a colostomy, the first of my surgeries to treat bowel cancer. On a particular low day after a night of insomnia, I came across one of Sam’s post, it was an emotional letter penned to ‘the stranger that tutted at me for using a disabled bathroom’. It was the first time I had seen anyone standing up to those with an invisible illness and I felt instantly connected having experienced something similar myself. Sam’s post went viral and sparked an explosion of people young and old being brave enough to post about having Inflammatory Bowel Disease and an ostomy.

Sam has dedicated her time to championing those with IBD, raising awareness of invisible disabilities with charity Scope UK and promoting body positivity for all.

Sam, thank you for taking the time to talk to us at the Bladder and Bowel Community…

Tell us a little bit about how your diagnosis of ulcerative colitis came about?

I started with diarrhoea and lots of bleeding in 2003 but despite visits to the GP and A&E I was told there was nothing to worry about and it was probably piles. Then I collapsed at home through dehydration and anaemia and finally was taken seriously and diagnosed with ulcerative colitis in 2004. I’d never even heard of the condition, I’d been so scared it was cancer that at first I was thrilled! Then I read up and realised the realities of this lifelong disease.

How does your condition affect you both emotionally and physically?

Physically I had 9 years of medication to manage the symptoms of IBD and then in 2013 I had a flare up that we couldn’t get under control and I ended up having a subtotal colectomy and end ileostomy. Since then I’ve had four further surgeries including a jpouch, a removal of a jpouch, hernia surgeries and now I have a permanent ileostomy.

It’s tough, there is also the fatigue and joint pain that are a daily struggle. Learning to live with an ostomy takes a while but even though it’s not the end of my troubles, I am glad I had the ops.

Mentally, I have been surprised by how much I’ve struggled.  The first couple of years after surgery were so taken up with recovery and learning to live a new life and then I’ve sunk slowly into a depression as time went on. I’m sick and tired of being sick and tired.

I have had talking therapy and I’m currently on antidepressants so I hope that in time, I’ll get there.

What support have you received for your condition?

In the early days, pretty much none! I was sent home with a prescription and I had no idea what was going on! I made the decision to move to Sheffield Teaching Hospitals and it changed a lot then, they have been fantastic.

When I had my first surgery, there were no UK based IBD blogs and so I felt very alone. It’s the reason I started So Bad Ass. Now there are thousands of blogs and I’m thrilled that people facing diagnosis now have so many people’s experiences at their fingertips.

You blog and post pictures about your wonderful family. How do you think your condition has affected them over the years?

I worry that my kids will look back on their childhoods and only remember having a sick mum. That really scares me. But there’s little I can do about it and so we make the most of every moment, I’m honest with them, I don’t lie or hide it, if I’m ill I explain what is going on so they’re not scared of the unknown.

I love my kids more than anything and I have to hope that having a sick mum has made them into more caring, open and empathetic people. They come and get in bed with me when I’m sick and we talk, watch movies and hang out. They’re just the most brilliant, weird, bonkers humans ever and they’re a joy to be with. I’m very proud of them.

How did you regain your confidence and remain body positive following your surgeries?

I felt strong!!! I felt like my body was magical, I’d had a part of me removed yet I was still standing! If anything it made me realise how much time I’d wasted before worrying about the size of my butt.

The big body changes in me coincided with my daughter going through puberty and so I knew I wanted to be a positive role model for her. My thoughts were that if I couldn’t be positive for myself, I could do it for my kids.

I grew up hearing women say bad things about their bodies, I don’t want my kids to. My ostomy and scars actually made me love my body so much more than ever before.  

What prompted you to start up ‘So Bad Ass’ and dedicate your time to advocating for those with IBD and invisible illness?

As I said, there were no UK based blogs talking about it and so I started one myself! It started with me just sharing my story, I never thought it would be read by millions of people around the world or would lead to being on tv, radio and in newspapers and magazines.

I do it because I genuinely care, I know how isolating and frightening IBD and having an ostomy can be. I understand that it’s so hard to talk to loved ones because they just can’t understand. If I can help one person then it makes it all worthwhile.

I’m incredibly proud of the blog and my readers are the best in the world, they’re so open and honest and care for each other and for me. I get hundreds of messages a month and each one means the world.

Ostomy surgery can be challenging both physically and emotionally. What are your tips for recovery?

Take your time!!! Listen to your body and understand that it’s a massive surgery, you need to give yourself time to heal both physically and mentally. Speak to your stoma nurse. They are a wealth of support and help. Try and be open with your loved ones. Let them in.

It is quite common for those with a chronic illness to also suffer with their mental health. You have been quite open about having depression and anxiety. How do you overcome this and what advice would you give to others who may be struggling?

I don’t think I have overcome it, I think I battle every day. My advice would be to open up and speak to someone, you will be amazed at how many people understand. You really aren’t alone.

You’ve now joined forces with disability charity Scope UK. Tell us a little bit about your work with Scope? What projects are you working on currently?

I’m the senior digital community officer for Scope, so I look after their online community. I LOVE my job!!! I work every day supporting disabled people, every day is different and it’s so rewarding. I work from home, if I couldn’t do this then I wouldn’t be able to work so I’m grateful to Scope for recognising my potential and working around my needs. The Scope community is open to anyone with lived experience of disability, illness or impairment, it’s a friendly and safe place to chat, ask questions or seek help.

What’s in the pipeline for ‘So Bad Ass’?

More blogging, more honesty, more over sharing!!! I’m working with a team at the minute to start using video much more, it’s a media that I’m not as comfortable with as the written word but I do love being In front of the camera.

You may also start to see a lot more of the Cleasby Clan with Timm and the kids getting in front of the camera too!

So Bad Ass will keep on running for as long as I’m still helping people. That’s what it’s always been about so as long as I’m helping, it will carry on.

You can read all about Sam and her blog on her website or catch up on the latest over on her Facebook page and Twitter.