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Child bowel incontinence

Hi everyone, This is my first time on a forum so apologies if I don't do something right. I'm at my wits end trying to find support emotionally and physically for my little girl, I've been fighting for almost 6 years now with her constipation, it started when she was 6 weeks old and she's now 6 years. The drs kept telling me she's just constipated tried lactulose and that didn't work, they just kept telling me it was common in children, but because it was left for so long she's now been left with incontinence. I finally stamped my feet and got her a hospital referral in June last year, she had blood tests but that showed nothing and they said she had chronic constipation and she had to have 8 sachets of movicol a day!!!! Great for being at school that, poor little mite. We had some clear out and she had a scan on her rectum and she's been left with 'mega rectum' (hideous name) but her rectum has been damaged and left over twice the size which is what's causing the incontinence. She's still in nappies she's petrified of pooing and pooing on the toilet, But she hates taking her medicine as she sees this as what makes her poo and what causes her to be in nappies, She's had some comments made at school about her nappy and had kids laugh at her when they get changed for PE, she now wears shorts under her dress' so they cover the whole nappy, it's been a fight to get school involved in her hygiene but they are great now, I just worry that she's going to suffer mentally more than what she is doing already! She would rather sit in her own poo than let you change her and I just don't know what to do anymore, I need some help in ways to get her to take her medicine, I've tried sticker charts, rewards, treats even her dad said she can literally spend what she wants in the toy shop but she just refuses, she genuinely says no to the treats. I have help from the hospital but I feel I'm going around in circles as this is the only treatment option they are offering, how do you force feed a 6 year old medicine 5 times a day without crying yourself to sleep at night and causes mental trauma to her, I just can't do it!?

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Morning my lovely so sorry to hear what you've both been going through,my heart goes out to you. My daughter has also suffered with this for six years but she's now ten. I'm afraid things haven't improved over the years and last November she had to have a bowel tracking X-ray which involved no medication for a week,this caused her to become doubly in continent for six weeks. Things were then good for two months but went backwards again after two long car journeys. We may be clutching at straws but feel it could be a positional thing,sitting on hard booster seat and also hard seats at school. She's big enough not to need a booster seat anymore and things have improved. We have also bought a cushion online that has a hole cut out to cushion the coccyx. Only came yesterday so haven't tried it yet. As their bowels are large and stretched I'm assuming it presses on the bladder causing the wee accidents. There is also the pooh nurses video( link on this page) which may help your daughter to understand why the medicine is important. We have also used children's glycerol suppositories which work very well but quite dramatically. Recently I have also put a powder on her breakfast cereal. It's called inulin quite expensive but they can't taste it. Good luck ,you're in the right place,we all really understand what you're going through xx

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Hi, you are defintly not alone here. For the emotional support you can ask for a referal to cams. We are in the process of waiting to hear something. They support the mental side of things. In Shropshire there is a charity called BEAM that can help.in the interim. Perhaps there is something like this in your locality.

Just an idea if she is still on large doses of movicol. It may be worth asking to use a stimulant drug which is in a liquid form and easier to take as it is smaller quantity. This may help you reduce the movicol dosage. When my son was up to 8 sachets he found it very hard going.

Quite often they sit in their own poo either because they don't realise or they just want to be normal for a period of time and not see disappointment in our faces. I now don't acknowledge it on my good days. I just brush it of which is harder said than done.

Another idea if nappies are bothering her perhaps consider using pads. I have tried them out and my son feels more free in them and not as conscious in them.

It's really hard to get them to the toilet when they are kicking of and giving you some form of abuse. All I say try not to react because it can make it worse in the long run. I used to count to 10 alot.

We have thrown that much money at rewards etc and it hasn't worked. We found in the end something silly like a few Smarties got us further with our son.

To be honest it is scary the mental trauma these children are going through and the families. Please keep talking because it is easy for yourself to loose your strength and wellbeing and she needs you.

Will the mega rectum shrink back in time if you can keep her constipation under control?

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Hi thanks for your reply, yes apparently it’ll naturally shrink back on its own if it’s kept empty! I’m just finding it impossible x

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Hi, so sorry to read this. She needs a lot of support as my understanding is it takes quite a while for the rectum to recover and so some form of stool softener is needed. Just ideas but you could ask gp/whatever service you are under for movicol alternatives, and try to disguise them in food or drink. Plus push for psychological support, this is a medical issue causing mental health issues so see if 'children's psychological services ' exists in your nhs trust. That isn't cams, it is a different focus on medical issues i think, but has varied remit so not every area will take a referall for bowel problems. But worth investigating, or you may get a private recommendation. We were lucky to see a psychologist, albeit a trainee but it did help our approach to my sons problems. Hang in there x

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My heart goes out to you too... I know exactly how tough this is and exactly how stubborn a 6 year old can be about medicine! But I am sure on this she is scared and upset and Movicol is minging so she has my sympathy.

A few thoughts that I hope might help...

- definitely ask about a stimulant alongside the Movicol as this will help move the poo through and start to help regain the muscle tone of the bowel wall. The Movicol is just softening the poo but to actually reduce the size of the rectum you need to make sure the poo is moving through and not just filling the void if that makes sense. The main ones are Senna and sodium picsulphate and the latter is actually pretty tasty. It’s called strawberry medicine in our house and my 6 year old reminds me if I forget it because to her it is a treat! Importantly it has really helped us. On Movicol my daughter was doing a massive soft poo every day but if i gave her sweetcorn it was taking 3-5 days to come out so the bowel was still too loaded to actually start to reduce in size. Sodium P has got this down to 1 Day now.

- we talk about my daughter’s naughty bladder and naughty bottom. It’s not her, it’s her bottom. I talk about this lots and talk about how other children she knows have ears that don’t work, allergies etc just like her naughty bottom.

- is she doing regular toilet sits after every meal? Sure you have been advised this but it is so important if you can persuade her

- on taking the medicine, I think you should try sitting down with your daughter and drawing up a plan of how to deal with it together (not at medicine time!) Explain about what is different inside her body and how the medicine is designed to help her and say that the problem is the medicine can’t help her bottom unless it is inside her. Explain it won’t be forever if she can take it for a while then you can reduce it. What does she think is the way to solve the problem? Is there something she thinks it tastes best with? Or a smartie after she’s drunk it to take the taste away? You drink a drink at the same time? Say you know it’s horrid. Write down on a piece of paper what she says doesn’t like and then brainstorm ideas to solve it together. It’s a thing from a parenting book I got a couple of years ago that has worked for us on a couple of stubborn issues, including getting my 6 year old to agree to toilet sits

- however, the main trick with medicine is to be silly about it if you can. We have a ‘drinks fairy’ that comes when my back is turned, and best of all, if I say to my daughter with a twinkle in my eye and a wink “do not drink that drink, promise me?” and then turn my back ... she bloody well drinks it and then I pretend act a grumpy mummy!

Finally - have faith things will improve. You have a medical diagnosis now which is such an important step.xxx

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Hi my 6yr old also takes 8 movicol a day and 5-10 mls of pico sulfate daily! She’s been on this for a year now. If this is any help we send 2 ready made beakers to school every day with 3 sachets in each, so she’s taking 6 at school, she has two set times when she will take this, as we also struggled to get her to take it!! You can add more than one sachet at a time it still has the same affect and it’s more tolerable for the child, we also hide them in juice and don’t make a fuss about it now! If you can get school to do this it definitely makes life easier. As for the leaking bottom we use liners in her underwear she has a bag with wipes, pants etc and her own toilet out of the classroom that she is taken to 3 times a day for 5-10 minutes and you will find if your child does a good poo the leaking becomes much less. Hope this was useful 😊

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'scans' use ionizing radiation ie. xrays. These damage dna! Very dangerous and unnecessary. Does she receive regular foot/tummy massages? How is her balance/coordination? Good peristalsis begins in the brain ie. right and left brain balance! Physical therapies can improve peristalsis imo. Also no milk products which are often laced with antibiotic residues that kill the essential intestinal microflora necessary for good b.m.'s. Hospital enemas and digital disimpaction can damage a child mentally for life.

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Thank you all so much for your support and advice and I’m so sorry that you’re all going through or been through similar things! It’s so hard for the little ones and us but I just can’t even imagine how she feels at times! Sorry I should have said she is on 10-15mls senna daily also, I put her movicol in juice, her school is one that doesn’t have juice they are only allowed to have water in their bottles, she doesn’t drink just water, I’ve now put in strawberry flavoured water just to get her to drink more, the school aren’t aware, I might ask them when they check her to give her some medicine at school too she may be more willing to drink it for them! I’m awaiting our next hospital appointment and I’m going request she goes under a consultant in the continence team or even if a nurse can visit us at home, the consultant we have now says that we need to clear her out first and then look at the mental health but I feel she needs this during the medicine not after! X

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My son is also incontinent of bowel and has massively enlarged rectum . He’s 10 and is now trying anal irrigation. There is a mini system that is suitable for 6 year olds in case you want to have a look. He has hospital psychologist the paediatrician and GP referred him to because of the pain and all the hospital intervention he’s had. If the anal irrigation doesn’t work I’m going to push for an ACE for him. The impact is not understood unless you’ve gone through it yourself. I’ve now found a couple of other children whose problems are as severe as my sons and it’s made a massive difference to his self esteem to know he’s not the only one. I would advise reaching out to anyone local enough to meet up with as feeling less alone has definitely helped my son X

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Hi, thanks for replying, so sorry to hear about your sons problems, can I ask how old was he when his issues began?! I’ve just looked at these irrigation systems and I don’t think she will be compliant with these as I had to use suppositories when she was tiny and she doesn’t even like me cleaning her down there as she is so scared I’ll use a suppository, she tenses up and clamps her legs 8-9 times out of 10 when changing her even now! But maybe it’s something I could talk to her about, she may go for it if it means not having to wear anything to school or she may be more compliant with meds if she doesn’t want it, I don’t want to scare her though x

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Issues started around toilet training age 2.5 but became very severe approx 18 months/2 years ago, meds stopped working at that point. Sometimes it’s knowing other kids it’s happening to that helps with deciding on treatments. I think feeling alone with it is almost the worst emotional impact. Then you can say, so and so is using ...... Also relaxation is helping my son- lavender spray, foot baths, hot water bottle, massage, hot bubbly bath. So they get back in touch with their bodies in a positive way X

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My boy hates movicol - he’s currently on 10 sachets a day & doesn’t know he’s taking it!

I put it in his grape juice & hot chocolate. I mix it as per instructions, then use it in cooking instead of water - bolognese, lasagne, whatever.

You can mix it, then add dried milk powder to substitute for milk in recipes eg pancakes.

If I’m desperate I can get 3 sachets in a pot noodle!

It means you have to cook separate batches of food, so the rest of the family don’t have problems, but worth it to get the job done!

Good luck!

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