My daughters soiling is in danger of making her a recluse!

[mummyloveslucy]

I just can't clean her without a shower. She soils between 1 and 6 times a day. She's on Lactulose, and her poo is always soft but she still does it in her knickers most of the time.
The main problem I have is that it gets into her vagina every time and it's a nightmare to get out with wipes. The other day, I had to try in a public lou and anyone would think I was trying to kill her! She won't do it herself. She does sometimes have a go, but she can never get it all out. She also has very sensitive skin and gets sore within an hour or so.
We've had to cut our days out short, or even stay at home.

She is home educated and loves being out and about but it's almost impossible without a shower.
Does anyone have any tips I could try when out and about?
She's started complaining that it hurts when she wee's too. I'm wondering if she might have a UTI. Her behaviour has also been far more manic than usual. (And that's saying something!)
I'd really appreciate any advice.

bump

How old is she?

Are you getting help on the medical side for the soiling?

I think you need to be very careful with delving around in her vagina with wipes when you are out. Sounds distressing and probably painful for your daughter. It would probably be better - as a temporary measure while you are getting the soiling sorted out - not to try to clean thoroughly when you are out and just get her to have a comfy bath to clean properly when you get back home. I just think you need to be really careful with how you manage this - she could be at risk of developing psychological issues about it if it's not handled right.
You should be getting specialist advice on this. I hope she is under a Paediatrician not just a GP for this. Discuss the psychological side of it with the Paediatrician and ask for advice with how to manage it.

re the hurting when weeing and possible UTI - you need to get her medical attention asap for that.

Wipes pull and not moist enough to do a proper job which is probably why she is fussing so much as it must take a good few wipes to sort it :)

When you go out try taking a small plastic bowl (even a yoghurt pot) and cotton wool balls. Use the wipes for the main area and then fill pot with warm water and use the balls to soothe it away better. Take a towel with you if she is too big for the changing unit then you could ask her to sit or lay on the floor?

Then just plonk her in the bath when you get home to be doubly sure. I would definately take her to docs re the UTI.

Hi, she is 7.5. The only reason I feel it's nesissary to get all the poo out is that she gets so sore if it's on her for any length of time. I did try that method once and she was so sore by the evening, even sitting in the bath was painful.
I willl start using a bowl and cotton wool balls and see if that helps. It does sound more comfortable that way. Thank you!
I really don't want to cause more stress over her toileting.
We are due to see the doc again for this issue so I'll make an appointment today and mention the possible UTI.

Oh, and the GP will be refering us. (I'll make sure of it!)

Has she ever been tested for coeliac's disease? Has she ever taken big doses of movicol for impaction? Sympathies, these sorts of accidents when out and about are a nightmare to deal with.

Possibly get some cheap flannels for use out and about, that you can throw away if necessary, that will be more comfortable than wipes.

Have you tried barrier creams, so that if any poo does get left when you are out, her skin is protected? Our continence team recommend Cavilon which comes as a cream, or swabs on a stick. I think there is also a spray. Unlike nappy creams it is non greasy and dries on the skin. We get it on prescription for ds but I know the tubes of cream can be bought over the counter (but it's about £9 or £10) if your go wont prescribe.

Ask your GP (or whoever is dealing with the bowel issue) for alternatives to lactulose. Perhaps movicol would get a better result and clear her out properly once a day rather than the continuous soiling. Must be awful for both of you. Certainly barrier cream sounds a good idea and check her urine out. You can probably get away with taking a sample to the surgery to be dipped if she doesnt like drs.

Thanks everyone! I did buy some Bepanthen today. That other cream sounds better, but it'll be better than nothing.
She used to be on Movicol, but it was recently changed as she refused to drink it. She was just the same on the Movicol, but would get constipated more often as she wasn't having regular doses.

why wasn't she having regular doses of Movicol, was it because she was refusing to take it regularly?

Yes. It got to the stage when she was only drinking one glass a day. She's never been a good drinker anyway, but at least now she's drinking a lot more.

We used to take a load of flannels damp ones in a Tupperware with lid, or you can buy washable wipes. They work better than baby wipes.

I use a foaming wash which is specially designed to clean throughly. It sprays out like shaving foam and can easily get into the 'creases' to clean.

www.gompels.co.uk/carewash-aerosol-cleansing-foam-500ml.html

Hope this helps

Mini-moan

Does she have a regular toileting regime?

The paed or clinic will probably recommend she sits on the toilet after breakfast and after dinner (ten minutes after eating) preferably having had a warm drink...

And they may suggest enema treatments to clear her out and reduce the frequency of soiling as well...

Other than that, the hygiene stuff above.

Also ask for referral to Camhs outreach worker for psych input if she is reluctant to toilet. Fortunately my spoiler is a boy. Makes it much easier from a hygiene pov, but more difficult in that I can't take him to public toilets.

Movicol mixed with orange juice not from concentrate (the one from the fridge) means that it is very tolerable. I have to take it as well and this is the only way that I can drink it otherwise it is revolting.

Thanks everyone. The foaming wash sounds really good. That's going on my shopping list.
If they could reduce the frequency of the soiling, it would make such a difference!

Oh, and we have recently started a toileting regime. It's reducing her wetting accidents, but it's early days for the other I suppose.

we have similar issues - chasing up a referral is a good idea. They may not be able to do much though - my ds has been on a movicol regime for nearly 2 years now with no great improvements. He isn't constipated or impacted (never has been), but withholds; we get the occasional day (2-3 times a month) where he will use the toilet with no prompting, most days we have soiling twice a day & he will eventually use the potty with prompting. On bad days (Monday!) he'll soil 5, 6, 7 times. He gets through 2-3 packets of pants a month (often too vile to wash).

We think there's a sensory issue - he's much less likely to soil when naked but it is mostly anxiety/phobia/behaviour. Tried everything that anyone has suggested & now we're just waiting for him to grow out of it.

Lots of sympathy - it has an enormous effect on our lives, more than anything else really :(

If you think she may have a uti it needs an urgent gp appointment. Repeated uti's can cause damage further up which will make it even harder to make progress on this front so this needs monitoring. Can you ask for a referral to scan her urinary system (kidneys, bladder etc ) and check for reflux. That in turn may get you access to other clinics.

good luck

Our paed always kick starts the toileting regime with enemas (series of three on consecutive nights). If child refuses, we are supposed to take to a&e.

Soiling is the pits. Sympathy.