Words by Emma, pronouns: She/her|Images by Elixir Black

For the longest time I’ve loved burlesque, pole and aerial performances. I love the art, the mix of seduction and comedy, the acrobatics and skills of the performers! I’ve seen friends learn and perform, and while I’ve always been intrigued, I wrote off myself having any involvement in that world since I have an ileostomy.

At nine, I was diagnosed with Crohn's disease, an inflammatory bowel disease, and at twenty I had my large intestine removed and a permanent ileostomy created. Some quick terminology: a stoma is an opening on the abdomen that can be connected to either your digestive or urinary system to allow waste to be diverted out of your body. An ileostomy means the connection is made with the small intestine. The small intestine is passed through the stomach wall and stitched into place. A bag then covers this opening to collect waste.

At twenty, a permanent ostomy was a terrifying prospect!

My doctors had bought up the possibility of this surgery being required when I was in my late teens and being a typical teenager, I literally thought I would rather die than have the surgery. At the time I had only heard of stomas as something for elderly people in nursing homes, or as punchlines to bad jokes. I was afraid the ostomy bag would be super visible, would smell bad, would limit what I could do - and then there was the question of how on earth would I date with an ostomy? I was already incredibly ashamed of having Crohn’s disease, since so much of the symptoms are poop-related, so having a permanent, visible reminder of my illness was not something I wanted to consider.

Thankfully my fears were unfounded. I finally agreed to have the surgery after getting sicker and sicker. I was underweight, in constant pain, in and out of hospital and having all sorts of fun inflammation side effects like abscesses and fistulas (abnormal connections between two organs that should not be connected, caused by inflammation). 

Recovery from the surgery took a long time. It would take over a year for the wounds to completely heal, and I struggled with sensitive skin not tolerating the adhesives used in ostomy bags. However, even with the post-surgery issues I was still so much freer with an ostomy bag!

For the first time in my life, I was free to leave the house without having to check where the toilets were. The constant low-level anxiety whenever I did not have immediate access to a toilet was gone! I could catch a bus without fear, I could sit through a movie, I could go to new places!

Of course an ileostomy came with a new set of problems. I had some disastrous leaks in public, but I survived the emotional trauma and realised people were either surprisingly unobservant, or, if they realized what had occurred were incredibly nice and just concerned for my wellbeing. I also found that since it was the appliance leaking, instead of my body failing, I could mentally cope much better. Framing the situation as the appliance failing meant I hadn’t “failed” and lost control of my bodily functions. While I might not be able to control the situation at least I had control of my body now.
 
Unfortunately, after a couple of years Crohn’s disease reappeared in my small intestine and eventually in 2015 I had to have a laparotomy, some diseased intestine removed and a new stoma formed. I got a nice large scar down my stomach, and as an added bonus also got psoriasis, which is not ideal to have on a wound, especially when you have to have an ostomy bag sticking right next to this inflamed skin! 

Eventually I healed up and was lucky enough to finally find my magic combination of drugs that worked wonders to control both the psoriasis and Crohn’s! At the start of 2021, I was the healthiest I’d ever been, and I was also desperately missing dancing. I had been swing dancing regularly for a few years, and after a life not spent being physically active due to illness, I had loved how both physically and mentally strong I had become through dancing. Being on immunosuppressants means I had to be cautious with the risk of COVID-19 so partnered dancing was out of the question.

I’d walked past Sky Sirens plenty of times and drooled over the window displays, however it wasn’t until a friend at work told me she had signed up for classes that I was brave enough to join.

Before my first class at Sky Sirens (sling!) I was so nervous; my stomach is covered in scars and while I wanted to wear the cute skimpy leotard, I was full of concerns- would my ostomy bag show? What would other students think? What would the teacher think?

While I was pretty sure it wouldn’t get in the way (after 10 years I’ve realised it’s sturdier than you’d think), it was still in the back of my mind since some positions involve a lot of time on your stomach!

I quickly fell in love with both lyra and sling and was so reassured by seeing so many different body types - all finding joy in moving and learning. Both teachers and students were so supportive, to the extent spontaneous applause is a common occurrence in classes! I found having an ostomy has made almost no difference in lyra and sling, apart from the odd move which I might want to angle myself slightly differently. The biggest thing I notice is aesthetic, I am not used to wearing skin-tight clothing so when I notice my bag bulging slightly I duck out of class to empty it.

Of course, I have had a bag leak during class, alas they often occur at the worst of times! While I was tempted to make up some excuse and run home, I was having so much fun in class and knew I would just be depressed if I went home in shame. Instead, I ducked into the bathroom, sorted myself up and went back to doing fun moves with no-one the wiser!

It has been great finding a new creative and physical challenge and doing aerial classes has given me physical strength I’ve never had before. I can do proper push ups for the first time! Mentally, the challenge of the learning choreography, and the creative flow of dance are also both incredibly fulfilling.

While my health is great now, I am so happy to have found somewhere where I can still go if I am at a different point in my illness. I have found Sky Sirens incredibly inclusive and accessible. While aerials are inherently challenging, the teachers are patient and supportive. Breaks during class are encouraged, teachers respect students limits and body differences are celebrated. There are also catch-up classes! While I haven’t had to miss class yet, it is so reassuring to know this is an option considering chronic illness can mean being fine one day and in hell the next.  

A lot of my motivation to write this came from wanting to raise awareness of ostomies. They are so hidden and can cause people so much shame and isolation.

With the rise of social media, it has been great to see people posting openly about having an ostomy bag. I have found models, Instagrammers and even pole dancers raising awareness that anyone of any age can have an ostomy, and it isn’t a big deal, especially compared to the years of ill health that often come before the stoma.

Personally, all of my biggest ostomy fears have turned out to be non-existent. I can wear cute, skin-tight clothes (even a tight-laced corset!), the bag doesn’t smell, I can swim, I can eat just about anything, I can pole dance! There are some things that require more planning, like going hiking or any activity that means a toilet won’t be available for a few hours but overall having an ostomy has given me freedom I could not have imagined a decade ago.

The same year that I had my ileostomy surgery, I moved into a shared flat, and for the first time I was forced to be open about my health. I was so lucky to be living with a wonderful bunch of weirdos who responded with curiosity! At the same time, I was studying biomedical science, and again I found that when I told classmates they were interested instead of grossed out. People’s acceptance helped so much with my personal acceptance of not only my illness, but also my “new” body with an ostomy bag.

Being open about what I was going through made such a difference, as now friends understood why I might cancel plans or be exhausted after doing very little. It’s hard for people to be supportive when you aren't telling them what you are going through!

I have also found the more I talk about my health the more I come across others who have similar hidden chronic illnesses - turns out I know at least 3 other people at Sky Sirens with stomas! We are everywhere, just not always visible.

This week I signed up for my first burlesque class at Sky Sirens, which is not something I thought I’d ever do. I’m nervous as heck, but so excited to explore this art, and my body, in such a safe, welcoming place.