Peristeen

[Amy_L03]

Hello, I am 13 and i was born with Anorectal malformation and crossed fused kidneys. My consulant has said about trying The Peristeen has anybody used this before if so What is it like when you first start using it?. Would love to chat with anyone who has similar problems x

[Alibee75]

Hi there - good luck with that and I hope someone on here is able to share their experience with you. All the best

[Amy_L03 in reply to Alibee75]

Thank you ! Alibee75

[Georgina1475]

Sorry I haven't experience of peristeen but wanted to say welcome and it would be good to have a young persons oppinion, perspective on subjects here.

[Luella19]

Hi there. Maybe the ERIC team maybe able to answer some of those questions for you, they have a number you can call them on x

[mummynev]

Hi, our 12 year old son has been using the Peristeen system for just over a year now, it takes a little getting used to but has made a huge difference to his quality of life. It didn't take us very long to get into a routine and it's just part of life now, we even took the system on holiday abroad last summer.

He has his Peristeen before breakfast so has to get up early but we have found that keeps him clean at school during the day, our continence nurse says you can use it in the evening as well but we find emptying his bowel in the morning means he is more confident that he won't have accidents at school.

My son says definitely worth giving it a go and good luck.

If we can help with any other info please ask.

[Amy_L03 in reply to mummynev]

Thank you mummynev For your lovely respone , its nice to hear that other people around my age have tried it as im in the middle at the moment. Im still unsure about the peristeen as i tried it a little and i didnt like inserting it so i have sort of stopped using it at the moment and just tried carrying on with every day life but still having acidents but in someways i know this sounds completly strange and some people think im really weird for saying this but its sort of like something im used to.

When i have a accident it doesnt always bother me as i have had this condition since birth.

Did Your son have accidents in the day time if he did it at night time?

Also How much fluid do you use?

Thanks Amy

[Hidden in reply to mummynev]

I am wondering since your son uses the persteen system before school what happens when he goes to school does he bring it with him? I look forward to hearing from you thanks.

[mummynev in reply to Hidden]

Hi Gabe

My son uses the Peristeen anal irrigation system before school to empty his bowels this helps prevent soiling accidents during the day. He doesn't need to take the system with him to school.

Sarah

[Hidden in reply to mummynev]

ok thanks for the help.

[mummynev]

Hi Amy

Like you, our son has had problems for as long as he can remember and I don't think it sounds odd at all that you are used to having accidents so it doesn't always bother you, as I suspect our boy feels the same sometimes

He has been using Peristeen for about a year and a half now and found it a bit awkward and embarrassing at first but has got used to it. We tend to use it in the morning before school as it means he starts the day with an empty bowel so accidents are far less likely during the school day. We have used it occasionally at night and his nurse says she has other patients who do use it at night instead. All I can say is that it improved the quality of his life hugely. We use 400ml of warm water these days but started on around 250/300mls, he also uses the small/child size catheters rather than the adult ones.

I wish you the very best whether you decide to restart Peristeen or not but would say maybe have another try when you feel ready, our son uses it every morning at the moment but our continence nurse tells me that she has patients who use it on alternate days and even less frequently with successful outcomes. Good luck and please feel free to contact us if we can answer any more questions.

Sarah