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Strictly's Amy Dowden, comedian Siânny Thomas and content creator Emily Ellen Jones speak out about what it's like to live with Crohn's disease.

09 December 2020

What made you want to do a documentary and speak out about having Crohn's?

I wanted to try and help break the stigma and get people to talk about bowel problems because people don't want to talk about it because they think it's embarrassing, but it's so much more than that.

Another problem with Crohn’s is that it's an invisible disease. If someone was to come and visit me in hospital whilst I'm having a flare up, they really wouldn't know the effects it has and all the suffering. Somebody could be in work one day and be absolutely fine… and the next day when they ring up, 'I'm not very well'. People are like, 'well she looked fine yesterday'.

Or, if you're queuing for the toilet and you have to say to someone, 'and the reason I need to go is...'. [And then they say] 'Well, you look absolutely fine, why?’. It's trying to educate them.

I used to dread having to put my hand up to go to the toilet... it'd be five times in one class. You sat in the toilet and the smells aren't pleasant, and you could hear people giggling. Why did I feel so insecure and so embarrassed growing up? Why did I hide that? It's really important for people to speak out. People do understand, and they listen.

When I was growing up, I wasn't so aware of the symptoms, but now I'll get some signs. Lucky enough, normally I can nip it in the bud before it becomes too big. I think my nasty flare up I had earlier in the year was due to the stress of lockdown, shutting the dance school, closing my tour down and having to postpone my wedding. But normally I'll have signs: I'll have ulcers, feel tired and have pain in my stomach before it gets bad that I know I've got to up my meds or speak to my doctor... and normally we can get it before it's hospitalisation.

You can hear Amy's interview in full in The Hayley Pearce Podcast.

Comedian Siânny Thomas

I got diagnosed with Crohn’s around 12 years ago via a colonoscopy.

Siânny Thomas

I think I speak for everyone with Crohn’s when I say, ‘we’re knackered man!’.

Siânny Thomas

I think I speak for everyone with Crohn’s or anyone with any inflammatory bowel disease when I say, ‘we’re knackered man!’. I’ve had anaemia slip under the radar a couple of times because I’ve assumed it’s the Crohn’s tiredness. When you’re in a flare up, even when you think about food, you get a stomach ache.

What would surprise people about living with Crohn's?

We are allowed a card; so, we could be in a supermarket, desperate and you can show it to a staff member, and they will let you use their staff loos. It is quite embarrassing talking about having a poo. If there wasn’t a 'poo taboo', there would be no issue with this, and everyone would be smiling and not blushing!

The biggest misconception about having Crohn’s is that we all have colostomy bags – some of us do, some of us don’t.

Can dating be awkward?

Dating wise, it hasn’t affected me. I have dated a few people with Crohn’s. I guess it’s because we get it – we don’t have to explain and there’s no embarrassment to be had.

What's your advice for people living with Crohn's?

My advice to people is educate your nearest and dearest.

Push for a diagnosis and get a better smartphone because you’re going to be spending a lot of time on the loo!

Content Creator Emily Ellen Jones

I was diagnosed when I was 11/12-ish, but I had symptoms for a few years. I then ended up, 3 years ago, having an ileostomy and it is one of the best things I decided to do with my life. I could finally go out and do the things that I loved; I could have a social life. Obviously, that does mean that I carry around a constant sack…

Emily Ellen Jones

You grow into a person that’s just so well equipped to deal with anything life throws at you.

A lot of people think, ‘oh, you’ve got Crohn’s – you go to the toilet more, you have diarrhoea, you have a bad stomach…’. Crohn’s is a lot more severe than a lot of people understand.

Do you have any awkward dating experiences?

I went to a beach with a guy I had met on Tinder – I realised the bag was getting pretty full. A lot of the time when the bag inflates it can be gas and there were no toilets on this beach, there was nothing. I was like, ‘oh god!’. I said, 'I need to pop out the back and grab something from the boot'. What I was actually going to do was release the gas. You take the little nozzle at the bottom; you point it upwards and you slowly depress the bag… and I shat on my own shoe! I doused everything in hand sanitiser!

Any advice?

Have people – that is the most important thing. This can be such an incredibly isolating illness and it’s a huge taboo topic… you feel you can’t leave the house, you’re too tired to socialise. You need people who actually understand that and who will support you through it.

You grow into a person that’s just so well equipped to deal with anything life throws at you. It makes you more confident in the weirdest of circumstances.