Movicol and soiling aged 8

[Hopeful1234567]

Both my sons are on Movicol, age 8 and 10. They have been on it for at least 5 years now. My 8 yr old has recently started messing himself again (Christmas I think) and doesn't seem to have much sensation, although it literally happened overnight, out of nowhere. I feel like we have muddled through for so long and still are!! He is now on Desmomelts too to try and ease night time wetting, started about 6 weeks ago. These seem to be working. I haven't done a disimapaction for a long time, but he goes regularly normally, and drinks loads every day now, especially since starting Desmomelts. Please tell me they will be able to manage their bowels soon! It has been so hard to deal with for so long now.

[Yaleamanda]

How much movicol is he on? When he soils is it really dark and extra smelly?

[Hopeful1234567 in reply to Yaleamanda]

He is on 1 daily sachet, and yes it is.

[Yaleamanda in reply to Hopeful1234567]

Sounds like you need to disimpact.

[Hopeful1234567 in reply to Yaleamanda]

He poos daily too on the toilet. Big stools.

[Yaleamanda in reply to Hopeful1234567]

Yep disimpact.

[Hopeful1234567 in reply to Hopeful1234567]

The hospital gastro nurse has never said we need to do that which is what I don't understand either. Thx for replying.

[Yaleamanda in reply to Hopeful1234567]

You are never going to resolve the issue on one movicol per day.

[Robinia]

Agree re disimpaction. 1 sachet maintenance dose is very low. Might need to look at increasing it after disimpaction.

[Hopeful1234567 in reply to Robinia]

OK thanks for your help.

[Booloo]

Just read your post .. how hard. Your little boys sound identical to my fella … he wet day and night and soiled constantly. We are on the home stretch now !!! No daytime wetting , no nighttime wetting and absolutely no soiling. He started school and had to have a class aid to constantly change him. I tried every consultant in Ireland and got no where. If his bowel wasn’t handing out of his body they didn’t care. Then I traveled to Chester to dr Auth my hero. What worked for us is rectal suppositories nightly and senna liquid. We never miss a dose and my god has it worked. We are at this 2 years in September … it just shows how stretched hid rectum was. He is only now regaining sensation and I hear Mammy I have a feeling …. outside of suppository time. No one knows the struggle unless you face it. We have a bit to still go and we meet him again in 6 months. I now have a boy who swims , plays football and heads off to friends houses without worry !!! Clean and dry . There is hope and I too was on this forum for years looking for answers into the early hours

[Hopeful1234567]

Thank you so much for replying. I honestly hadn't considered travelling out of our area to see a specialist (we are 1 hr from London). But really this does make me think we should not keep plugging away with what our local hospital has given us to try. It honestly has been years and it's so disheartening when it's now affecting his behaviour so much too. Best of luck for your lillte boy, lucky he's got you in his corner.