I did not name my first stoma. It was never mentioned by anyone to me, so it never occurred to me. I struggled with it, didn’t really accept it, and didn’t want to talk or even think about it if I didn’t have to.
Between my first period with a stoma and the second, I began an online IBD community. Many of those people have stomas, and that was the first I ever heard or thought about giving a stoma a name. Before then I think I just called it “my bag”. Stoma, for some reason, was a very hard word for me to say out loud.
By the time I needed that second ileostomy, I was in a better place mentally, thanks to the online community. I felt like I had support, and people I could go to with any questions. I decided to call my stoma Porta, because he’s my little porta loo. Referring to it by name definitely made it easier for me to talk about. I even had friends who would ask me “How’s Porta doing?”
Some research suggests that naming your stoma could help you accept it. However, naming your ostomy is not for everyone. A friend of mine, who is also an ostomate, said to me “You wouldn’t name your anus, so why would you name your stoma?”. It did make me laugh, but like I said above, I had my reasons, and it was helpful for me.
It probably sounds odd, but when I had that stoma reversed, I felt like Porta was still there, only back inside my abdomen. Always existing. I think I’d created such a persona for him, and grown so fond of him, that I didn’t want to let go!
I know other people that have had more than one stoma, and each new stoma has had a new name. Or even the same name with 2.0 on the end!
When I realised that I needed yet another stoma, I instantly started talking as though Porta was merely coming back out. On the day of my surgery, I posted that Porta was back.
Soon after, I actually dropped the name. If someone asks if my stoma has a name, I say yes, he is called Porta, but I don’t refer to him as Porta anymore in general conversation or posts. I tend to just use “my stoma”. Referring to it by name began to make it feel like he was a separate entity, which ironically, was what had helped me in the past. Porta didn’t pass wind, I passed wind. Porta didn’t leak, my ostomy bag had a leak. You get the picture… I think I am more comfortable, and accepting of it just being a part of me now.
Names beginning with “St” are popular in the ostomy community. I know a fair few people who have named their ileostomy, colostomy, or urostomy Stella, Stan, and Stewie. I also know a few Winnie’s, for obvious reasons.
I asked what people had named their ostomies in the Fittleworth Facebook group, so I’d like to end this blog by sharing just a few of my favourites!
One woman named hers Matty, after the surgeon that created it, which I thought was super sweet .
One man called his Poppy, because of the noise it makes.
We hope you enjoyed this article from our guest blogger. They are expressing their views or knowledge on a topic because of their experience & background. Some of the opinions expressed may not reflect the views of Fittleworth or your NHS professional.
It goes without saying, but this is not clinical advice. Each person will have an individual set of medical factors to consider. So please do not to make significant changes to your diet, exercise or treatments before consulting with an NHS professional.
Sahara was admitted to hospital and diagnosed with Ulcerative Colitis at the age of 19, after just two weeks of being incredibly unwell. One week later, she had emergency surgery to remove her colon and rectum, and had her first ileostomy. A turbulent journey followed; a multitude of treatments, complications, seven surgeries, a failed J-Pouch, and three ileostomies later, she is living with a permanent stoma and is a pro-active IBD and ostomy advocate.
Sahara joined the online IBD and ostomy community in 2014, and it very quickly became apparent to her that whilst awareness is important, even more important than that is providing support to others as they navigate the stormy waters of life with IBD, or an ostomy.
She runs #IBDSuperHeroes fundraising and awareness campaign, and the Facebook support group. She is a blogger for InflammatortyBowelDisease.net and an IBD Patient Consultant for merakoi – bridging the gap between patients and healthcare. She gets involved with research whenever she can, and is a volunteer for Cure Crohn’s Colitis, where she donates her time and expertise in social media marketing and content creation.