Ninthe (9) lives with her parents and brother in Almelo, The Netherlands. From the day she was born, she was unable to feel the urge to go to the bathroom. We interviewed Ninthe and her parents at their home. Ninthe hopes her story will inspire other children to understand that bowel irrigation is not a problem and that you can go to school again without having accidents.
After trying countless therapies and many hospital visits, Ninthe started with bowel-, also known as transanal irrigation (TAI). Ninthe has been using Navina Classic followed by Navina Smart for almost a year now and has had no more accidents at school since then. She can even do gymnastics again, her favorite hobby.
So what do you think of bowel irrigation, Ninthe?
Ninthe: “I don't get a signal from my body that I have to go to the toilet, therefore the poop piles up. Then I get constipated. When I try to go to the toilet, it doesn't always work. Fortunately, with transanal irrigation, the poop comes out immediately. Now I have far fewer accidents, which is very pleasant. Fortunately, I can feel the urge to pee.
The first time I tried TAI was a little bit frightening, but I got help from the nurse. Once I had done it, it wasn't too bad – and now it's going well! Sometimes I don't feel like doing it, but I know I still have to. If I need to, I can do the irrigation all by myself, but mom and dad still help me.
I've also been on holiday using the pump, I just brought the bag with all the accessories. I even went to grandma and grandpa at the campsite. But I like staying in a house better when on vacation, because there's no normal toilet on the campsite.
How did your school presentation on bowel irrigation go?
Ninthe “It went really well, the class gave me full score! Not everyone in my class knew I had problems going to the toilet, but now they all do. No one thought it was strange, which was really nice.”
Ninthe talks enthousiastically about her hobby gymnastics and gives a demonstration.
Since when does Ninthe have difficulty going to the bathroom?
Parents: “Ninthe has never been able to go the toilet normally. As an infant her belly was always bloated and sometimes we had to use a thermometer to get the stool out. She had problems sleeping and eating and was suffering from tummy aches quite regularly.”
When she got older, she became more aware of it and felt ashamed. At one point she was at an age where she didn’t want to use a diaper anymore. A stool insert wasn’t sufficient to prevent accidents from happening. But to boost her confidence we decided not to give her a diaper, but an insert and some fresh clothes. Of course, that situation was far from ideal.”
Were you hesitant to consider bowel irrigation?
Parents: “No, we’re very much down to earth. For us it’s an ideal solution. In the first hospital we went to, the doctor said she was too young for irrigation and recommended physical therapy, toilet and pelvic training instead. We also tried EMDR psychotherapy and alternative medicine, but nothing worked, so we were out of options.
We went to a hospital in Amsterdam for a second opinion and they concluded that Ninthe was constipated and that the loose stool leaked around hard stool which caused the accidents. The only thing that would help to prevent these accidents was transanal irrigation, so we tried Navina Classic – and it has gone really well.”
Do you see any change with Ninthe?
Parents: “Fortunately yes! She rarely has accidents and she doesn’t complain about tummy aches anymore, she’s less fatigued and has started to eat well. She has also taken up her gymnastics again, which is great. It’s very hard to do acrobatics and sit on someone’s shoulders when there’s a risk of having an accident. It’s much easier for her to leave the house as well. We don’t need to carry a whole bag with materials and clothes. Just to be safe, we only bring an insert. Ninthe doesn’t experience fecal urgency anymore – i e imagining she has to go to the toilet when she doesn’t.”
At first, when using Navina Classic, she did get a bit bloated, maybe because she squeezed the pumps too hard. Now, with the Navina Smart everything is going really well. She uses 600 ml of water and started using the catheter instead of the cone, which is great as it keeps her hands free!