Peristeen experience anyone?

[Jsw78]

My 5 yr old has been on movicol for a couple of yrs and frequently soils. Both the continence nurse and myself think that until she starts caring about pooing in her knickers no amount of movicol will change this as she isn't impacted. She doesn't seem to get the message to go as her passage is so stretched and enlarged. When she is aware she needs to go she often tries to withhold. The nurse has suggested a peristeen washout every night to remove any poo for her so allowing her passages to get smaller but told me it could take several years for things to shrink to normal size and for messages to get through telling her to go normally. I just wondered if anyone had any experience of this in an otherwise normal sassy 5 yr old? It seems a big and rather unpleasant commitment for her but not really sure if we habe much option? Any experience or advice appreciated!

[Robinia]

5 seems so young for peristeen. I wonder if Senna would help alongside the movicol. I’m surprised the nurse is suggesting peristeen for a 5 year old. We haven’t used it, we are persisting with movicol and I am currently trusting the gastroenterologist who says it’s a matter of time....I may get a bit twitchy if things aren’t getting better by the next time I see him in December!! Have you see a paediatrician or paediatric gastroenterologist?

[Jsw78 in reply to Robinia]

no just a continence nurse.

[Jsw78 in reply to Jsw78]

I don't think the problem is necessarily the constipation in isolation I think it's either not knowing or caring (at least on the surface) when she does soil or getti g engrossed in a task and not wanting to interrupt it to go the toilet.

[Robinia in reply to Jsw78]

Yes that sounds very familiar. Does she sit on the toilet twice a day with a squatty potty type footstool? My son does after breakfast and after tea in the evening (approx 20-30 mins after). It’s supposed to help re-train the bowel. He isn’t technically constipated anymore but his bowel isn’t working properly yet so it’s constant soiling with, I think now some poo in the toilet. I learnt about the daily sitting routine from this forum rather than a health professional! He plays games on the toilet so that makes him sit for ages. I just don’t know how she will get on with Peristeen at such a young age. You can do a search for Peristeen on here as there are a few posts with reference to it, I know because I asked about it myself before. If things don’t improve for my son in the next 6-12 months the. I will probably ask the gastroenterologist about it (my son is 10 in December so I would prefer to have him mostly clean before high school if at all possible) let us know what you decide to do X

[Jsw78 in reply to Robinia]

yes we have been having toilet time a year or so, it does help her go but doesn't stop the soiling. Will keep you posted!

[Robinia in reply to Jsw78]

We are now waiting for the Peristeen referral as my son is back in hospital impacted, did you decide to go for the Peristeen in the end?

[Jsw78 in reply to Robinia]

we saw another consultant who changed her medication to pico sulphate. After a terrible few weeks with really bad accidents, things settled down a bit but we have been referred to Alderhey children's hospital. The Dr wants to make sure there is functionally nothing wrong with her bowel as sometimes the poosshe produces are enormous. So no to Peristeen at the moment as things have improved slightly. There is a lot going on in terms of learnt behaviour to withholding though that we still think would benefit from Peristeen. Have you tried it?

[Robinia in reply to Jsw78]

I am waiting for it at the moment, he’s just been in hospital for 7 days for assessment and disimpaction. The paediatrician won’t prescribe it until she’s had a conference call with the gastroenterologist 🙄 . My son can’t poo, only soil so hoping the Peristeen happens quickly as he’s in awful pain every day which the movicol makes much worse. Will let you know if we get it, have you watched the Peristeen video?

[Jsw78 in reply to Robinia]

yes. I have found pico sulphate so much better than better than movivol. Good luck , really hope it makes life more bearable for you and your son. Xx