Encopresis - 9 year old DD

[Hippee]

DD has had encopresis for as long as I can remember. We take the Movicol. Sometimes it works and we can have weeks of normality but then if we stop to see if she's better or run out for any reason (there seems to be a Movicol shortage in our town and she won't take Laxido as an alternative) we go back to the pant soiling. The GP told us that she would probably grow out of it by 8, but she's still going. She gets upset about it and worries about her friends finding out. I try to keep her fluid intake up and make sure she eats plenty of fruit and veg. Does anyone have any experience of it lasting this long/any advice about other things we can try?

Hi, sounds like you are doing all the right things. One of my children carried on occasionally with this past the age of 10.
Have you tried a spoonful of mulled linseed on breakfast cereal on the morning?
How much dairy does che eat?

Thanks Thistly - I will pop some linseed in her porridge. She doesn't have loads of dairy - milk in porridge or on cereal, cheese in things like pasta bake, the occasional yoghurt or hot chocolate, but certainly not glasses of milk every day. It's a relief to hear from someone who has experience of it lasting later and still getting better.

Hi @Hippee. Saw your thread title and wondered if I'd started this and forgotten! We're in exactly the same position. Dd is 9 and a half now, and we still have soiled pants most days, with periods where things get better. Also on Movicol, 1 sachet morning and night. Never thought we would be dealing with this for so many years. One of the issues we have is dd not admitting when she's had an accident. No advice I'm afraid, but just wanted to say you're not alone (I often feel we're the only ones dealing with this, and frankly it's embarrassing).

Sorry you are going through this too NuzzleandScratch. DD also seems to be unaware (or refusing to acknowledge the soiling) as it is often dry by the time we deal with it. I'll keep you posted if anything we try works. It's not something that you can really talk to people openly about! I will say that Wright's Liquid Hand Soap is the only thing I have found that takes the smell of poo off your hands

Thanks @Hippee. Exactly the same with us, with it drying by the time we find out. I've said to her, it won't magically go away if you ignore it! One small bit of progress we had this summer is she decided to put together a little backpack of spare pants and wipes for when we go out, so it wasn't always down to me. Thanks for the tip on the soap! The smell on the hands has driven me mad in the past. I must admit I'm more inclined to throw pants away these days. She's literally never owned a pair that haven't been soiled at some point.

As far as your comment about coming off Movicol is concerned, the paed gastro we saw advised that dd would need to stay on this for at least a year after the initial clear out, and a lot of parents make the mistake of coming off it too soon. We were also told that because dd's bowel had been stretched for so long, she may no longer get the normal sensation to go.

For us, I know diet is part of the problem, as she eats very little veg, and no fresh fruit, so we buy those little pots of fruit purée for babies!

Will keep you posted with any tips! I was recommended to call the charity ERIC, which I tried today, but couldn't get through. Have you ever tried them?

We have had a shortage too, and my DS refuses laxidol. I have managed to get some and did consider buying adult dose and halving it. dS is a big 11 year old so felt adult dose mAy work. Think we have been on movicol for about 8 /9 years now. No signs of moving off it, despite doing all the veg etc

I hadn't realised that ERIC dealt with this - I also had two late bedwetting DSs, so looked up that side of things with them. Good to know about not stopping the Movicol (annoyed that our GP didn't tell us that) - though it now worries me that there seems to be a shortage here. DD will only wear those very snug short-type pants (I think she is worried about leakage). We also use panty liners when she is regularly soiling and that can really help save the pants.

Your GP sounds ill informed. Children don’t just ‘grow out’ of constipation and soiling. But as children get older they can become more proactive in self-managing their condition i.e taking their medicine, drinking 8 drinks of water a day, sitting on the toilet 20 minutes after meals - which all helps. My daughter has been on (decreasing) amounts of Movicol / Laxido since the age of 2 and she is now 8. What really helped about 18 months ago was also introducing a stimulant laxative sodium picosulphate on top of the macrogol to help clear her out of all the softened poo.she is really only starting to make the mental connection that she needs to drink well (she’s a terrible drinker), I think it will he a few years yet before she can completely come off the Laxido.

I agree Thesunrising - have been working on DDs self-management (not hugely successfully) - have asked school to prompt her to drink, but they are so busy I don't think it happens.

I sympathise with the school thing @Hippee I too have tried to impress upon several teachers the importance of the water drinking and getting my daughter to use the toilet after lunch and not just before when they are sent to wash their hands. They lack the resources and understanding to make sure it all happens. Though given how common this problem actually is, it’s amazing how few teachers are switched into it as an issue.

@Thesunrising we tried sodium picosulfate, but found that made the poos rather explosive. We sometimes give her Senakot in the evening, but I'm not sure if that makes much difference to be honest. Interesting you say this is very common. Do you think it really is? I have no idea, and as said earlier, it's not something you tend to discuss with other parents, especially as they get older. With regard to drinking water, dd tells me this year they can take their own water bottle to school (usually they just help themselves to cups), so I'm thinking I might fill a bottle and tell her she must finish that over the course of the day.

I read a thread where a program called Soiling Solutions was mentioned as a 'cure' for encopresis. It apparently has good results so is worth an internet search...

Thanks @LilyFromTheValley , just googled that. I'm a bit sceptical about the large sums of money they want to charge, and also their claim to fix the problem in 2 weeks. I know when my dd was initially found to be severely impacted that 2 weeks wouldn't have been possible. But I do appreciate the suggestion. I wonder if anyone on here has tried the programme.

My 4 year old has been on laxido for over a year and still kept having soiling episodes for a good few months, he’s toilet trained has been for a year, I took him off laxido last month and he drinks 600ml water a day or more and eats broccoli and other green veg and brown pasta and his bowels have improved going to toilet on his own, no accidents, I have seen a massive change in him since coming off the sachets, over using them can cause a lazy bowel

Google the poo nurses.
Watch the whole video.
It is likely that you have never achieved disimpaction.
Did you do a proper disimapaction regimen to begin the process?
I agree with pp. You should not be stopping movicol.
It takes years to fix this problem, but it can be done.
You need to follow the poo nurses' programme to the letter.

missloum that is so wrong. You are fortunate that you used the laxido for long enough.

I agree with everything Thesunrising said.

Firstly - has she got encopresis - passing a fully formed stool into her pants, or is she soiling - diarrhoea type sticky poo in her pants?

Love the poo nurses! Have definitely been misinformed by GP and will be following their recommendations instead. We're having the overflow soiling at the moment so need to stock up on Movicol for the disimpactation process.

Agree with everything @endofthelinefinally said.

Poo Nurses website is great. Disimpaction regime is a must - get the bowel clear and find a maintenance dose that works for you. Do not stop the Movicol. If there’s a shortage then Cosmocol is an alternative.

Osmotic laxatives do not cause a lazy bowel.

I personally know someone who had been using movical for years after being told they had constipation when infact when they seen a gastroenterologist to check for any other under lying conditions they found they had a colon that didn’t function properly and made the process of digestion longer so therefore wasn’t constipated, they had been using movical for too long which resulted in a prolapsed bowel, they had informed them that overusing laxatives can make your bowel muscles weak, and she was taking it every day, laxatives are only ment for a short term use it states on NHS website, I would recommend seeing a gastroenterologist, that is why I took my son of laxido and he’s completely fine after it

missloum
What you say would make sense if you were talking about any other laxative.
I have never come across a problem such as you describe with the use of an osmotic product. It makes no physiological sense.

Wow I had no idea so many people had the same issue as us. Our DD is 5. Has been medicated for two years. We seem to get in a good space for 6 months or so and then some how something happens and the routine falls off. We've just seen the consultant last week who did say it's something she'll grow out of 🤔. She is a classic psychological pool with holder - we often catch her with her knees below her chin and refusing to go when she clearly needs to. Diet is good and she sits on the toilet for 20-49 minutes every day. Consultant told us to do a "clear out" over a weekend withmovicol when the routine fails (so not a disempaction I guess as he didn't want it to get to liquid and he thought she was only a day or two behind with her poos). She did a massive poo straight away, although we are continuing with high dose movicol.

My question is does this sound right ? And also how have you found the right balance with movicol ? We have found it makes DDs poo so soft that she always leaks even if on one sachet a day. When we were last in a good rhythm we had no movicol but Senna 2/3 times a week. I know Senna is problematic as she can get used to it.

Lastly I asked consultant about the Dr Pooper method. He didn't think it was for DD as he didn't think her bowl was stretched and that it should be used on older children when they are more aware/ engaged in finding a solution, but I wondered if anyone had used this method (it's basically two months of enemas)

www.bedwettingandaccidents.com/about-the-authors

The poo nurses are the holy grail of bowel issues. Brilliant video that covers everything clearly and simply.

I personally know someone who had been using movical for years after being told they had constipation when infact when they seen a gastroenterologist to check for any other under lying conditions they found they had a colon that didn’t function properly and made the process of digestion longer so therefore wasn’t constipated

Slow transit constipation is still constipation - I’m not sure how else you could define it?

My DD has been on Movicol for 7.5 YEARS. Her symptoms started as a very young baby and Hirschprung’s disease was mentioned. The surgeon who assessed her told me that, if she did have it, osmotic laxatives would not work on her, because they do not stimulate the bowel, they merely soften the stools.

We can’t come off it because she has major food issues and barely drinks a thing. I’d rather stay on Movicol than come off it and jump straight into bowel impaction.

Anyway, that’s by the by. Osmotic laxatives are fine for long, long term use. Anyone who says otherwise is mistaken.