Outfits picked, backpack packed, tickets at the ready – like anyone else heading for Glastonbury this week, Lucy Smith-Butler is gearing up for one of the biggest events in the festival calendar.

But she has one other consideration – packing the essentials for her stoma bag.

The 26-year-old had surgery to get the stoma bag fitted when she was 19, two years after being diagnosed with a bowel disease called ulcerative colitis, a long-term condition which causes inflammation of parts of the digestive system.

The stoma, a small hole in her abdomen, removes the waste from her body into the fitted bag, which Lucy has to regularly empty.

Over the past few days, she has been sharing her festival prep with her 21,000 TikTok followers.

“I’m just excited to see it,” she says, referencing what will be her first Glastonbury experience.

“I love festivals because you just disappear from reality for a while.”

This may be Lucy’s first experience of Glastonbury, but she has been a festival enthusiast since she was 13 years old.

But she says attending events before she had her surgery was difficult.

“I just didn’t know what the facilities would be like,” she says.

“But then as soon as I had my stoma bag, I was like, ‘Oh, right well, let’s make this work again.'”

Lucy’s condition means she has additional access needs and requires a clean space to change her stoma bag, as well as access to disabled toilets.

She says it’s not always been a pleasant experience, recalling one instance where she says she had to physically show a steward her stoma bag before she was allowed to use an accessible loo.

One of the biggest problems Lucy says she faces is dirty festival toilets – even the accessible ones which are used less.

“I just changed my stoma bag in my tent most of the time, just because I know who’s been in there, and it feels like the cleanest place,” she says.

“There should be places for us that are clean and are up to these standards.”

Lucy is hoping that will be the case this week, and has so far been impressed with her experience of arranging her accessibility needs at Glastonbury.

She says she booked her tickets as normal and then contacted the festival to arrange access to the areas needed.

Glastonbury says there are no separate weekend tickets for festival-goers with access requirements, but they are committed to being an event which is accessible to all.

Anyone needing to use any of the access facilities must complete the festival’s online access application form, and have either a valid access card or the digital Glastonbury access pass.

The access card translates a person’s disability or impairment into symbols, to communicate their access needs to the venues and service providers.

“The process for Glastonbury was a lot more thorough than any other festival that I’ve ever been to,” Lucy says.

Ahead of the festival, she was sent a wristband with a code number on to be able to get into the accessible toilets – something she says she has never seen at a festival before.

Using her large social media following, Lucy says she is determined to raise awareness of what it’s like to go to festivals and other big events with a stoma bag, or other accessibility needs.

Her followers often reach out to her for advice, she says, adding that her top tips are to:

• Contact the festival as soon as you have booked your tickets
• “Prepare, prepare, prepare” – prepare for everything that might happen
• Carry all your supplies with you all the time
• Go with friends who are supportive and understand your needs
• And most importantly: don’t forget to enjoy yourself

As well as being able to share her experiences and advice online, Lucy says her social media presence has helped her to make friends at festivals too.

“I was literally bawling my eyes out,” she says as she remembers a chance meeting with someone who had decided to attend their very first festival after finding Lucy’s social media page.

“When you know you’ve helped someone, it just feels really nice.”

Ultimately, Lucy says the best thing to do as someone feeling nervous about going to a festival, but wanting to see what it’s like, is just to give it a try.

Despite the difficulties she has experienced both before and after her surgery, Lucy says she now “can’t imagine a world where I wouldn’t go”.

“The worst that can happen is that I might have a leak, and then I’ll just sort it out,” she says.

“You’ve just got to try it.”