What happens if a performer has a bowel condition and they suddenly experience an attack and urgently need the toilet mid-set?
What happens to that artist if the same situation happens backstage and it’s hectic, totally full of randoms and the only toilet is currently occupied by an idiot powdering their nose?
How does that artist bring up the subject with the promoter in such a busy environment without feeling self-conscious?
How do they perform while suffering acute stomach cramps?
And how do they avoid attack-triggering foods while on the road, eating during anti-social hours and usually having to resort to processed food from fast food outlets or service stations?
A snapshot of realities and trickeries for touring artists who have a sensitivity with their digestive system.
It could be Irritable Bowel Syndrome (IBS), an allergy or a sensitivity to certain ingredients. It could be Inflammatory Bowel Disease (IBD), Crohn’s or Ulcerative Colitis. At the very worst stage it could even be Bowel Cancer.
Whatever the bowel condition is, there’s absolutely no way of making this article cool, clever or sexy. But we’re definitely not sorry for bringing this topic up. With 1 million people in the UK alone living with a serious bowel condition, there’s a chance you may either relate to some of those questions, or know someone who might.
It’s shit.
Literally. A universally shared human experience that’s seldom discussed publicly and certainly never in dance music discourse.
Peace, love and unity? Yeah maybe sometimes… Until someone starts talking about their raging squits or broken glass piles. Then the party suddenly goes very quiet. The kitchen empties. You’re left on your own feeling awkward AF. Especially among boomer-raised men who’ve only just stopped being issued the message to ‘man up’ and that ‘crying was for babies’. Beyond giggling at a fart gag, discussing ‘internal operations’ is not on many of our bingo cards. Comparable toxic blocks are faced by women, too, due to the age-old Patriarchal stereotype that women couldn’t possibly poo or fart. (Although women are so much better at actually talking about bodily functions and health issues so much more sensibly and supportively)
Fundamentally this is for every single individual who has a gut and a butt.
Just as humans have started to normalize and destigmatize all discussions around mental health – and more recently we’ve started to create more empathy and understanding about how to support and give space to people with neurodivergent needs – bowel conditions comprise another invisible disability that is frequently overlooked and terminally misunderstood.
It’s a disability that comes with a huge menu of symptoms and challenges that impact physical and mental health, mobility and travel. For some, it’s literally stopped them from doing things they love to do.
“I’ve got irritable bowel syndrome (IBS) and it’s pretty severe,” Akuratyde told us earlier this year. In over 20 years of interviewing artists, before writing this article, this was the only interview that bowel conditions have ever come up, such is the social stigma.
“I’ve had it for 14 years now. It started out more dietary based but over the years I’ve developed a really intense anxiety over it from experiences of being sick when we’re out and the fear that comes with that. Never knowing what’s going to happen. I could be at the grocery store and suddenly have to run to the bathroom and that’s caused me a lot of anxiety.”
Akuratyde (real name Dan) loves mixing but hasn’t performed in a club for many years. His IBS has literally stopped him DJing. Flying (another popular itinerary item for DJs and touring musicians) is a massive red flag. “The idea of getting an IBS attack mid-flight and there being a long queue for the toilet can be panic inducing.”
Dan is not alone. While his symptoms, and related anxieties, are so strong they’ve taken him off road entirely, many artists do still tour while dealing with high levels of physical discomfort and social anxiety. Take Glitchgirl, for example.
“I always ask for an accessible toilet. I don’t want to drop Crohn’s bombs in a public toilet with people half a metre from me. I don’t want them to hear or experience that. The sounds and smells are very hard to ignore. And for me that’s not a good frame of mind or physical feeling before I play a show.”
“So many people fight it, but nobody talks about it,” continues Glitchgirl, real name Alicia Muñiz. “People can’t physically notice something is wrong with you so they don’t accommodate your needs or see that they might need prioritizing. They only do when you explain to them. And that can be embarrassing. A lot of people instead will suffer in silence and make themselves in more pain and discomfort.”
Alicia estimates around 80% of her shows are performed in discomfort or pain because of her Crohn’s. It’s a disease that means she can’t absorb many nutrients or goodness from her food. This not only leads to bowel discomfort, it also comprises low energy levels, fatigue and social anxiety.
“It’s not very good for socialization,” she agrees. “You can be talking to someone and very suddenly have to go to the bathroom. You don’t have time to explain or you might feel very self-conscious about explaining. Crohn’s makes you look like you’re an arsehole because you’re in pain. Or you’re being rude. There are always people who will be understanding and accommodating but the majority of people will assume bad things. They won’t see the chronic pain, they’ll assume you’re lazy or arrogant or they will think that because I am thin they think I am healthy.”
The tightrope anyone with an invisible disability has to walk is endless and forever buckling with moments where you feel you have to justify or explain a situation just because it seems out of the ordinary to someone else.
Yet the issues these challenges surround are so widespread, literally anyone reading this is going to relate or empathise. In 2020 The Rome Foundation Global Epidemiology Study ran a trial over 33 countries around the world and their results found that 40 percent of the world population suffers from chronic gastrointestinal problems.
Genuinely no one on this planet can categorically promise their constitution is 100% reliable. Especially not when other typical ingredients of nightlife and rave culture come in. Be it booze, drugs, lack of sleep or good exercise, stress, anxiety or just having to rely on service station sarnies or meal deals because they’re cheap and handy when you’re on the move.
“Before diagnosis it made it incredibly difficult and painful to perform. Afterwards, its mostly a challenge to figure out food and managing stress/anxiety beforehand,” agrees a New Zealand artist named Lily. You’ll know her as Unsub, or other associated aliases Alexis K (AKA Alice) and n0ismakeR (AKA Ellie) who also co-exist within her due to her experiencing dissociative identity disorder. They all share the same digestive system and the same painful challenges of IBS and coeliac disease, which is a painful reaction to any gluten-based food.
“So a lot of planning, meditation and having safe foods on-hand for events,” they explain. “Also makes doing full festivals pretty difficult more often than not as they’re not always suited to having allergies.”
Festivals are a key issue here. It’s something I personally noticed firsthand when arriving at a festival with Glitchgirl and saw how dismissive the accreditation official was of her Crohn’s disease and how her particular requirements hadn’t been met (and how the professional showed no signs of trying to listen or help)
While the rest of our travelling group was processed relatively quickly, she had to debate with officials for an additional hour to get her needs met. This is as an artist on the line-up of the event being made to feel they’re not welcome at the event full stop.
“Being on the road and on tour with Crohn’s disease is horrible, yes,” she confirms. “Especially if it’s a festival. Camping is so tricky. The temperature has an effect on my stomach and toilets are always very challenging. If you’re a headliner playing for £10,000 then of course you will be accommodated, you maybe will have a trailer and personal toilet and a hotel because you’re capitalistically justifying it. But for most of us who are further down the line-up, it takes a lot of effort for your requests to be met. Or you’re just told to use the ‘normal’ toilet.”
Lily Unsub agrees and explains that “Most [promoters] tend to leave you to deal with it yourself so haven’t really bothered to bring it up much anymore beyond ‘will sort food things ourselves’.”
So how can we improve on that and create a better level of empathy and more understanding space for artists with bowel conditions? Perhaps understanding the pain that is experienced by those suffering issues might shed a light on why certain requirements need to be met?
“The feeling was like I had three swords in my belly,” explains Hugo Marques. “I couldn’t sleep, I couldn’t stand up, I couldn’t do anything. I was lost. I didn’t know what the hell was going on.”
Hugo runs the popular music channel and label Drumad. He was diagnosed with a range of bowel conditions throughout 2021. First gastroenteritis, then ulcerative colitis, then Crohn’s. It left him hospitalised for months and had such an impact its changed almost all aspects of his lifestyle.
“I am mainly sober now, of course. And I don’t drink coffee or carbonated drinks,” he explains. “Of course I go to the toilet a lot more often and I avoid eating out in restaurants because I don’t know what they use in preparation and ingredients. So if I arrive in a new place, I’ll seek a grocery store so I can manage my diet but generally I limit myself to stuff that I know or places I can trust.”
This is manageable on a domestic level and resonates with a point that Dan Akuratyde made when he brought this subject up in our past interview: “What I tell people is, ‘it makes my world smaller’. There are things that are challenging and difficult for me to do but would be easy for someone without IBS to do.’”
The challenges become harder and harder, the more you travel and have to tour to make an income. Most artists with bowel conditions didn’t set out on their career with these health challenges but have developed them over time as they’ve got older. Some, perhaps, might even be a result of poor diets due to being on the road in the first place. “You are what you eat,” admits Hugo. “Some things are easier to eliminate from your diet than others. Drugs, booze, eating fast food, for instance.”
Hugo’s supportive role in the industry means he doesn’t have to travel quite as much as his performing peers but it does mean he’s been able to have discussions with colleagues and realise how common the issue is.
“When I found out I had Crohn’s, I started talking about it and realised how widespread it is,” he explains. “When people don’t know about it, they don’t have a chance to talk about it. This way we can share experiences and help each other.”
This is where we are at. It’s why Glitchgirl has released a track called IBS (I Be Shitting) today and why we are publishing this article at this particular time… To normalise a discussion most of us feel uncomfortable talking about and millions feel uncomfortable living with. As we have with other invisible disabilities, the hope is to get people sharing their experiences and understanding each other and supporting each other.
Many artists with bowel conditions either declined to participate as it’s too personal or didn’t have time but others who have contributed came with their own warnings and insight. The bowels are such as a sensitive and complex organism (and often referred to as the second brain due to the amount of information being passed through your enteric nerve system) that you might find it hard to get the correct diagnosis on the first time you discuss your symptoms with your doctor. Two examples of this came about during our research.
“I was diagnosed with IBS based on symptoms alone, no tests,” explains DJ Fedi Minikin. “I was getting bloated every morning, it didn’t matter what food I would eat, I felt ill, no energy. It was happening every day and the doctor just prescribed Buscopan.”
This continued for an extended period of time during which Fedi experienced chronic fatigue and found her artistic pursuits were impossible after she’d got home from work because she had no energy at all. With a history of bowel cancer in her family, she pushes for a colonoscopy.
“They found a polyp,” explains Fedi. A polyp is tumor often found in the bowel that is benign but can become cancerous if not removed. Fedi was 25 when they found the polyp. “The doctor said it was rare at my age and if it had stayed there it might have become a lot more serious. So while it was a very uncomfortable situation, I am so glad I did it and I have regular checks now. But my advice is to listen to your body. So many people get turned away by the doctor because they haven’t been able to explain their symptoms clearly enough or the doctor has misdiagnosed them. If you continue to feel unwell, then continue to push the matter until you feel you are being listen to.”
This case is echoed by the artist known as Script. AKA one half of Scar. He was experiencing chronic heartburn and was finding his time on the road extremely challenging because of it. The doctors identified his issue as gastroesophageal reflux disease and prescribed him a drug called Omeprazole. While this did stop certain symptoms, it also prevented his body from making enough stomach acid to break down food and absorb the right amount of nutrition. Over the last 20 years – during which he’s battled all kinds of discomfort and misdiagnoses and had multiple tests – he’s continued to take this prescribed drug and he’s now learnt his body has developed an allergic reaction to it. At its worst, the pain he experienced felt like he was being strangled.
“Hundreds of people in this scene are on this medication. I know because I’ve talked to them about it,” says Script, real name Mike Borthwick who describes original symptoms as he experienced as ‘like a match to a fire in his stomach’ and were most likely to be stress and lifestyle related.
“I was in acute agony yet for years the doctors didn’t question whether it was the drug itself. I’ve looked into it myself and have had a much better handle on my health through my diet. I’ve completely come off coffee and caffeine, chocolates and fizzy drinks and I’ve started to feel great. In my brain I feel 25 again. This medication fucked with my health and my mental health for years and I know so many people who also take it.”
Mike makes two valid points: question everything and take as much time as your doctor will allow to get to the core of any digestive issues you have. Speaking from a UK perspective, the NHS has been so battered by previous governments, tiers of unnecessary middle management, endless profiteering by cronyism, the growing population and the growing age of the population that its professionals don’t have enough time to be as thorough as they would like in testing you and understanding your body. Doctors want to help but it’s your body so the best help can be how you articulate your symptoms, your consistency with any records you’re keeping of your symptoms and your persistence. In the words of Fedi, “no one would willingly request a colonoscopy unless they were genuinely concerned they needed one.”
Mike’s second point is more valid… Diet.
As a society we celebrate our reliance on caffeine to operate and our need for alcohol to socialize. Two of the biggest triggers for attacks and flare ups for many bowel conditions. Riders are filled with sugary drinks and sugar substitutes are incredibly processed and filled with unnatural ingredients. Another huge red flag for many with any type of digestive sensitivity.
Life on the road means you can’t monitor your diet or cook with natural ingredients. Even for performers who are at a level where they’re accommodated in more up-market hotels where room service is an option, the risks are the same… Nothing is cooked fresh during anti-social hours, everything will be pre-cooked and pre-heated.
To put it simply, for those with bowel conditions you better hope you get big enough to tour with your own travelling chef and nutritionist, because until then you are always at the risk of eating something that triggers an attack.
So what is the conclusion?
For all people we spoke to, the consistent message is to continue talking about it and helping non suffering peers and colleagues understand the challenges and pains being experienced. Like other disabilities that were previously swept under the carpet and ignored because they’re deemed inconvenient by those who don’t experience these challenges, the more normalized this is, the more the industry will have to provide conditions and requirements that help people with bowel conditions feel welcome, safe and listened to. Some of the most important requirements come at no cost at all. Just understanding.
“My advice to people who want to help is simply to listen and be patient,” says Glitchgirl. “Maybe offer a little bit of water or provide food if we need it. Ensure there’s a quiet space to recompose and feel a bit better. If we get worse then bring us to the hospital. Two ways of a flare up – going to hospital or waiting until it passes and feeling horrible. Please resist with us, be with us, next to us, let us process it and wait until it passes. It will be okay.”
Like every other invisible disability, space, empathy and understanding is the key. And for those of us who do experience digestive issues, Glitchgirl has a message, too. It’s the best advice we’ve heard throughout the whole process…
“My message to all artists who experience IBS and Crohn’s is that it’s very imporant that you transform your pain into art. That’s what humans have done for centuries. Pain can be translated into something beautiful or something horrible you want to expel out of your body and communicate with others. Make something out of your pain. Transform your pain into something because it’s the force that moves you.”
IBS (I Be Shitting) is how it’s moved Glitchgirl. The track is out now on Bandcamp and this Friday on Spotify.
50% of all proceeds from IBS (I Be Shitting) will be donated to Bowel Research UK. If you’re experiencing any discomfort in your bowels or recent changes to reactions to food in your diet please seek your doctor’s help immediately and always speak up. Let us help to normalize this conversation and hopefully fewer artists will suffer in silence in the future. Look after yourselves and each other.
