Living Your Best Life With a Stoma

Nils doesn’t let his ileostomy keep him from living a full, active life. He loves to hang out with family and friends, go to the gym and the beach, and participate in extreme sports like skiing and parachuting.

Meet Nils, Crohn’s Rebel

Nils, who is in his 40s, lives in southern Norway. After experiencing years of illness and pain in his teenage years due to Crohn’s disease, he underwent stoma surgery at age 26. Nils loves the freedom and confidence that his ileostomy has given him.

“Imagine living life without any limits – without pain, without constantly worrying about your health, and without missing out on the things you love; that's what getting a stoma did for me, “says Nils. “I haven't had a day off sick in 18 years, and I'm able to go to the beach, play sports, go parachuting, and plan ski trips; it's incredible to compare my life now to how it was before the surgery, when I would often visit the bathroom 40 to 50 times a day.”

Confidence leads to openness and honesty

According to Nils, the people closest to him would describe him as positive, energetic, and strong. He loves pushing boundaries when it comes to sports, and he strives to achieve things that might be considered difficult or impossible. In addition to parachuting and skiing, he also plays tennis and handball. Although handball is a contact sport and very physical, he doesn't worry about his stoma bag coming off during a game. Even in his job as a caretaker in a rehabilitation clinic, where he occasionally must handle people physically, he is confident that his pouching system will stay in place. 

Nils’ confidence has enabled him to be extremely open and honest. He speaks about stomas on television and shares his story online. He’s happy to talk about anything related to life with an ostomy – even sex and relationships – without any embarrassment. He’s also very transparent in his dating life. “If I meet someone new and things are going well, I usually tell them about my stoma after the first date, well before things get intimate,” says Nils. “I’ve never had a single negative experience or any kind of awkwardness.”

Nils's teenage children have never known him without a stoma, and he loves how little they care about it. If they're curious, they just ask a question and accept the answer. The interactions are straightforward, positive, and – as is often the case with kids – sometimes funny. “My son loves to say, ‘Hey, has someone farted? It’s not my Dad, he can’t fart!’” laughs Nils.

Peristomal skin health is key

Nils knows that maintaining skin health is crucial when you have a stoma, and he encourages others to learn as much as they can about it. “I want the skin around my stoma to be the same as all of the other skin on my body; if it gets wet and irritated it hurts and burns,” he says. “I find it helps to be consistent and precise when you’re changing your pouch; manage things carefully and keep everything clean,” says Nils. “It’s also important that your skin is dry, so the skin barrier adhesive works and secures the bag.”

Be positive and live your best life

Nils' overall advice for people with a stoma is to live their lives to the fullest. He suggests not worrying about what others think, or about how a new relationship might go. He encourages everyone to live in the moment, and to get out there and do the things they want to do.

He also encourages ostomates to talk about their experiences. “Don’t be afraid to speak up and share your story about living with a stoma,” he says. “By being open and honest, you can help break down the stigma and inspire others to live their best lives; start a conversation and see how your positive attitude can make a difference!”

Nils received compensation from Dansac A/S for his contributions to this article. The testimonials, statements, and opinions presented are applicable to the people depicted. These testimonials are representative of their experience, but the exact results and experience will be unique and individual to each person.