Skye aged 7 ½ and her mum Samantha participated in the trial at Addenbrookes Hospital we were lucky enough to get the opportunity to hear about their experience with the new cone, and advice they would share with other families starting irrigation.
Tell me about your experience with switching to the new cone?
Skye is less resistant to do irrigation with the new cone. She has autism so routine can be really important to her. And bowels can sometimes not be routine. She says she doesn’t feel the cone going in, which used to be a concern. She has sensory concerns, and the new cone doesn’t trigger those sensory issues.
Now, it doesn’t feel like a big event; it’s very streamlined and quicker. She will often put the cone in herself now, and I just fill the bottle. It only takes 5-10 minutes, and everything comes out quickly. We also talk about how this being smoother is linked to her drinking her water and the other tools we use, having her involved and having her understand what all of it is doing to help her has been important.
Switching to the smaller cone with the new outlets was a positive thing, and Skye was dead happy to use the new cone. When participating in the trial Skye was in primary two and talked about how she was a big girl now, and I can help the younger kids.
What tips would you have to other children who are starting irrigation?
Talk through the experience a lot; I talked with Skye and with the family. Include the whole family in the process. Skye was sometimes feeling left out, so I make sure I am not leaving her in the toilet alone. Her brother comes upstairs with his computer, and I sit in there with her and chat or read a book together. Making sure that she realises she is not alone in this, and that we are all in it together.
It can be demanding on a family, but carving out that time and prioritising it has made it a more streamlined process. Before we started intentionally carving out the time, she could sometimes feel that I was rushed and it would lead to a meltdown, but that isn’t happening now.
There was in the beginning feelings of it being unfair, and she was asking questions about why it was her and not others. But we have talked about how all humans are put together differently, and everyone has something, I have things, and her brother has things. I also make sure to remind her that it isn’t a punishment. If we have to do it at a time we normally wouldn’t then I explain to her that I am doing this for you, to give you peace of mind at school. If it makes us a little late for school I make sure she knows that is not her fault. I am very mindful of the language I use around it.
We have been irrigating for two years now, but we are now starting to get to the point where we can transition from once every day to once every two days.
