10 year old with encropesis

[sasmcl]

Hi all Sorry for long post but just found this forum and wish i had years ago ...Son is 10 and has had encropresis for about 7 years just feel that no doc listens just movicol daily which doesnt work and leaves me guilty about dishing out laxatives to my child ! Went again today and finally got a referral to paeds after all these years! Hes going through his transfer test this year and the anxiety caused by this other problem is just not fair! He has some good periods but then bam accidents everyday out of nowwhere! He says he gets no warning sometimes at all and can sit all day in school soiled scared to do anything about it. We are now back on the daily movico waiting for referral that could be couple of months and gp didnt even examine his tummy. He broke down and cried in her office im heartbroken for him? Any advice truly welcomed

[Laundrymaid]

Hello Sasmcl,

I am sorry to hear that your son is having a hard time at the moment.

My advice to you is based on my own experiences with my nearly 13 year old who has suffered with chronic constipation and associated issues since birth, she is not cured and we have good periods and not so good but here is what helps.

I am assuming that as your son was prescribed Movicol that at some stage he was believed to be constipated or suffering from a slow bowel?

Firstly I would recommend you watch the 'Poo Nurses' video, you will find it on this site. It will give you a good indication as to whether he is on the right dose and also if the soiling is actually caused by overflow. Watching this gave me a major "Ah ha!" moment.

Secondly if any of the video resonates with your sons experience get him to watch it too - doing so finally gave my daughter the language to voice what was going on with her.

Thirdly try a sitting routine with your son. About 20 minutes after breakfast and the evening meal get him to sit on the toilet for about 10minutes. Initially it doesn't matter if he poos, it's giving his body the opportunity to have a bowel motion (eating naturally stimulates the bowel). I am amazed at how often this works for my daughter who has no awareness of needing to go to the toilet and when she does manage to poo the accidents disappear for the day.

Fourthly, water, water, water & natural fibre. Movicol on its own is not a cure.

Make sure the Specialist is aware of the anxiety that your son is feeling about this.

And from one Mum to another, let your son know that this is something that is happening to him, it is not who he is and it does not define him xx

I hope this helps. There are always hiccups along the way and certainly for my daughter I don't think we will find a cure but I'm hoping that we are learning to mange her condition a bit better.

Stay strong xx

The Laundryymaid

[Robinia]

Argh.......poor you and I feel dreadfully sorry for your son. I’m so glad you’ve found this forum. You and your son are not alone. My son knows I’m on here and that there are other kids with similar issues to him (he’s 9.5 and in nappies day and night following severe impaction) I’ve actually read some posts out to him. It sounds as though the support you have received is horrendously poor.

Does your son have a daily sitting routine? My son plays Fortnite/another game or watches YouTube on a phone on the toilet morning and evening for at least 10 minutes, sometimes 20 mins! And then goes into the shower (he has 2 showers a day because of the soiling) He has his feet on a stool similar to a squatty potty.

Lots of people on here are using a combination of Senna and movicol successfully after movicol on its own hasn’t worked.

In my experience fluids are really important, at this age they rarely drink enough so now I make him tall glasses of squash with a straw and make him sit and drink the whole drink 2/3 times a day as well as drinks bottle everywhere we go.

My son is on 4 sachets movicol daily and recently we did a disimpaction which took about 10 days. My son has an inflated gym ball which he uses to help get his wind out (he’s on there for hours each day and does handstands up against it) I’m buying him a trampoline for the garden.

He’s taking other things I’ve found online for constipation alongside the movicol.

He’s under paediatric gastroenterologist, paediatrician, hospital psychologist (for the pain), continence service (all NHS). And previously he had support from the school nursing service. Privately he’s had osteopath treatments, seen a nutritional therapist once and yesterday I contacted a reflexologist and a hypnotherapist to try. It’s absolutely heartbreaking what you described about your son breaking down in the GP surgery. Give him a big hug from me and tell him my son understands totally and this is the start of making things better 😁. Does he have pads in his pants and a changing bag in school every day? My son is allowed to use the disabled toilet in school, this helps. It’s important school are sensitive to his needs, good luck and great that you are here, welcome 🤗

[SallyandPaul]

So much fantastic advice from the other two posts. Just wanted to say that sennakot definitely needs to go with the movicol. Our daughter has recently had scans to check kidneys and bladder function etc because she has had frequent uti s with the soiling. They may inject her bowel with Botox to tighten the muscles. Fortunately no scarring or permanent damage. She is nine and has been suffering in exactly the same way as your son. Tell him that he's not alone and we send you both our love xx

[Louloubelle23]

Hi there,

So sorry to hear how this is effecting your son. My daughter is 10 too, and been suffering with the same since birth. She has been on a mixture of movicol and Senna - then recently we swapped to Senna and sodium pico sulphate.

With regards to the school situation though, have you spoken to the school/teacher? They really should be aware of what's going on and can probably help. With my daughter she's allowed to go to the toilet throughout the day without asking, and uses the disabled toilet. She's got a bag of clean pants, wipes and skirt which is kept outside of the classroom, so that if she does have an accident she can grab it easily without any of the other kids seeing. She's allowed to take her iPod to school so that after lunch she can time herself on the toilet for 10 minutes. She's just had ELSA support at school too - a 6 week program to help with her anxiety. Her teacher is really supportive and takes my daughter to one side for a chat if she's feeling particularly anxious. It's definitely helped my daughter knowing that there's people at school who understand her problem, don't judge her and are on her side. I realised your son may feel too embarrassed to tell the teachers but he really shouldn't suffer in silence.

There's also a really good video on YouTube called 'The poo in you - Constipation and Encopresis Educational Video. My daughter was shown this when she was doing ELSA at school. It's really clear and shows you what's happening in side.

GP's aren't always very good with this sort of thing as they aren't experts. Hopefully you'll get some better results once you start seeing the Paediatrician. I hope you don't have to wait too long.

Best of luck with it - and let your son know that he's not alone.

[sasmcl]

Thank you all so much for your support and love honestly made me cry today hearing your stories and all your amazing advice ! I hope all your wee ones are doing well coping with all of this Im sure they are with such brilliant calm parents ! We are doing ok today been able to go after doing the sitting after meals and movicol taken once today ...going to stick to that routine and more fluids as u suggest see how the next couple of weeks go but defo going to call appointments next week and see how long the wait for paeds is before considering going private at least for a consult ? thanks so much again im so glad i found this forum xx

[Laundrymaid in reply to sasmcl]

Hi Sasmcl,

I had to laugh, about 5 minutes after writing to you last night (NZ time) I was locking heads with my daughter over why she hadn't taken herself off to sit on the toilet after our evening meal! Apparently it was my fault for not reminding her. She is nearly a teen and is the centre of her universe. We are not all calm, we just tackle each day just like you, some good, some not so good xx - here's to more good ones!

[Robinia]

😂 I second Laundrymaid...I am frequently very far from calm although I know it’s what I should be 😜 but here you’re amongst friends and can have a little rant/cry and helps relieve how emotive it all is...sounds like you and your son are doin amazin 🤗