Tineke Plessen, volunteer and brand new member of the Members’ Council at the Ostomy Association, has worked with vulnerable people all her life. According to her, a stoma should become a normal topic of conversation. “I’ll joke if my stoma bubbles again.” Tineke recently put her impressive story on paper. Her book ‘They call it a rose’ tells her journey through ulcerative colitis to an ileostomy.
Why are you volunteering?
‘I had quit a busy job, and I didn’t want to think about doing nothing.’ Laughing: ‘Friends said: your stoma is a godsend and gives you fun work to do again.’ Seriously: ‘I think I can make a meaningful contribution.’
Why do you have a stoma?
‘After 25 years of being cured of ulcerative colitis, there was suddenly a high risk of colon cancer with metastases. On the doctor’s advice, it was decided to have the colon removed. But I’m quite down to earth, the type who quickly forgets bad experiences.’
You are open about it.
‘I name it, that’s my way of normalizing it. I joke when my stoma bubbles again. Removing the unfamiliarity is the most important thing. There are still many people who are terrified of having a stoma, but hardly know what it is.’
How do you notice that?
‘In my environment I often see that a stoma from others is accepted, but that the idea of getting one yourself is just about the worst. It is a real problem for Muslims. You must be clean before praying in a mosque. And with a stoma, unfortunately, you have no control over that. But I think an imam would probably make an exception for this. It is a pity that we have few volunteers with an Islamic background.’
Why is the taboo so persistent?
‘I think ultimately because we are not really used to talking about poop, pee and intimate matters. It won’t be an easy topic of conversation either.’
What are you committed to at the Ostomy Association?
‘I sit on the scientific research and innovation committee, am involved in the Resource Guide and coordinate the visitor services of the North-West region. I like to act as a training actor when training volunteers. I then play a patient who tells his or her story. It’s about learning to listen and asking the right questions. What’s really going on? Does anyone have difficulty with a stoma or is this perhaps putting pressure on the relationship? If they can tell their story, you have already won a lot.’
