Shelley’s Tips for Looking After Your Wellbeing When Living With a Stoma

After suffering for several years with ulcerative colitis, it simply became too much for Shelley Lawes to bear. She was going to the toilet 30 times a day and found no respite from her medication. Thankfully, everything changed the moment she elected to have stoma surgery.

Today, Shelley is happy, healthy, and an advocate for helping people with ostomies maintain their wellbeing and get the attention they deserve. She also helps others come to terms with their condition by writing a regular online blog.

Shelley was diagnosed with ulcerative colitis in 2005. After years of trialing different medications, she opted for stoma surgery – and she hasn’t looked back.

Everyone around her describes Shelley as a real hero because of the way she has navigated her journey and used her learnings to support others. But Shelley says, “I don’t want to try to be some superhero; I don’t want to be somebody that I’m not. I’m not the kind of person to start going on major bike rides, running 5Ks, climbing mountains, etc.”

Finding an ostomy community

Her main advice for people with ostomies is to find a community, whether that is online or in person. “Once you find a community, it becomes easier to ask questions,” she says. She believes that knowledge is power and that talking with others is very important. “It will help you decide whether surgery is the right option and how you want to proceed afterwards,” she continues.

Shelley believes that the best people to speak with include online communities, pouch manufacturers, and stoma care nurses. “If your skin’s bad or you keep getting leaks, ask for help; don’t hide it, don’t just get on with it,” Shelley advises. “You are 100 percent entitled to live well with your stoma. And remember, rarely there isn’t a solution.”

Being an advocate for your own health

Shelley gives examples from her journey when she encourages people to become advocates for their own health. “I want them to know that it’s OK to put your foot down and tell health professionals what you want and expect; after all, it’s your health and nobody else’s,” she says. “For too long, I was this person at the end of the phone, waiting for the decisions to be made; I felt like there was a hierarchy, and I had to wait because they’re the clinicians. I’m trying to help patients get the attention they deserve.”

Tips for managing wellbeing when living with an ostomy

Shelley has three tips to help manage wellbeing throughout the journey of getting surgery and living with a stoma:

  1. Call on your close friends who also live with stomas. “I know that when my anxiety is bad, or if I am struggling, I can speak to them and feel instantly better. You have to keep talking. It doesn’t matter how long you’ve had your stoma or how well you cope with it. Some days are just not going to be OK, and you have to talk.”
  2. Take care of yourself. “Rest, baths, personal hygiene, etc., it’s just making sure you get up, have a shower, and groom yourself. Even if you’re not going anywhere — these little things can make a massive difference to your well-being. My blogging also helps to keep me busy. I feel like it gives me purpose knowing that I have helped other people.”
  3. If you have children, ask people for help. “My partner is great at offering support and my mother-in-law is also incredible. So, knowing that I can reach out and say, ‘I need you to help me with the children because I just need some space’” is fantastic. And I’m honest with the kids as well. I’ve been honest with them from Day One about my illness, and they are so understanding.”