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…

请告诉我们您是如何诊断出溃疡性结肠炎的?

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.

这很艰难,还有每天都在挣扎的疲劳和关节疼痛。学会接受造口手术需要一段时间,但即使这不是我的麻烦的结束,我很高兴我做了手术。

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?

我担心我的孩子们在回忆童年时只记得有一个生病的母亲。这真让我害怕。但我对此无能为力,所以我们充分利用每一个时刻,我对他们诚实,我不会撒谎或隐瞒,如果我生病了,我会解释发生了什么,这样他们就不会害怕未知的事情。

我爱我的孩子胜过一切,我希望有一个生病的妈妈能让他们变成更有爱心、更开放、更善解人意的人。当我生病的时候,他们来和我一起躺在床上,我们聊天,看电影,一起出去玩。他们是有史以来最聪明,最古怪,最疯狂的人类,和他们在一起是一种乐趣。我为他们感到骄傲。

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

我觉得坚强! !我觉得我的身体是神奇的,我的一部分被切除了,但我仍然站着!这让我意识到,在担心自己屁股的大小之前,我浪费了多少时间。

在我身体发生巨大变化的时候,我的女儿正处于青春期,所以我知道我想成为她的一个积极的榜样。我的想法是,如果我不能为自己积极,我可以为我的孩子们这样做。

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?

就像我说的,没有英国的博客在讨论这个,所以我自己开了一个!一开始我只是分享我的故事,我从没想过它会被全世界数百万人读到,或者出现在电视、广播、报纸和杂志上。

我这么做是因为我真的在乎,我知道IBD和做造口术是多么孤立和可怕。我明白,和所爱的人说话很难,因为他们无法理解。如果我能帮助一个人,这一切都是值得的。

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?

慢慢来! !倾听你的身体,明白这是一个巨大的手术,你需要给自己时间来治愈身体和精神。跟你的造口护士说。他们给了我们大量的支持和帮助。试着对你爱的人敞开心扉。让他们进来。

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.

你现在加入了英国残疾慈善机构Scope UK。跟我们说说你在Scope的工作吧?你目前在做什么项目?

我是Scope的高级数字社区官员,所以我负责他们的在线社区。我爱我的工作!!我每天都在帮助残疾人,每一天都是不同的,这是非常值得的。我在家工作,如果我不能做到这一点,我就不能工作,所以我很感激Scope能够认识到我的潜力,并围绕我的需求工作。Scope社区对任何有过残疾、疾病或损伤经历的人开放,这是一个友好而安全的聊天、提问或寻求帮助的地方。

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 websitesobadass.meor catch up on the latest over on herFacebookpage andTwitter.