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Child soiling- anal incontinence- tried everything

Hi there- I’ve spent 5 years fighting for my daughter who is 6 and a half. I think when she was small she was allergic to bottle milk and we didn’t notice that much but she was farty and always went red to poo with her knees up in a corner. She is wee trained but in the following years she has constantly soiled herself and we ended up being referred to a gastroenterologist who we’ve seen for 4 years now. At first they said she was constipated and put her on laxatives but I insisted it wasn’t true and they wouldn’t listen. So she went from soiling 10 x a day to 20x a day until I decided enough was enough. I saw a nutritional therapist who had a poo test done and said she had gut bacteria issues and potential food allergies so we removed dairy and wheat which worked well. We put her on a gut health programme which also really helped. Yet as the years have gone on it’s caused her mental problems too as she cries a lot about her situation and now wants to ignore that it exists which compounds the problem. She will sit in her poo rather than change her pants and get angry if you ask her to go. Recently I had a new gastro and they said she wasn’t constipated but she was anally incontinent- I believe this is anal damage caused by the original allergy and the pushing when she was small. She has no sensation at all and sometimes when she is on the toilet and I ask her has she done a poo she says I don’t know- let’s look- and one is there. The doctor can’t refer me to anyone for help as there are no support services available and we only get an appointment every six months for ten minutes which is pretty useless- she tried to refer us to an incontinence team but apparently this isn’t complex enough an issue to be a problem so the referral was rejected. . I’ve upped the exercise, She is seeing a Pilates teacher, am managing her diet, we juice fresh every day which really really helps- yet she still soils because she has no idea it’s there and if she farts it seeps our too. It’s not constipation yet all the guidance online focuses on it. I am totally lost. Has anyone got any advice? I don’t want her to be bullied by kids at school as she gets bigger, I feel she hasn’t got any dignity given to her and she feels traumatised by being different to everyone else.

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This sounds like my daughter ! She soils about every 2 hours, can’t really poo in the toilet it just falls out of her. If she has laxatives it makes her soiling worse so currently she’s on probiotics and inulin. We are due back at peadiatrician on Monday but don’t think they ever really listen to me

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nor me. am sorry to hear it. am so frustrated and sounds like you are too. I was told that they can only do something to help her once it becomes a complex problem - I said so basically you want her to get really sick - physically and mentally before you do anything and they said...ummm yes. I mean ridiculous

Juicing really has helped us...and probiotics. still nowhere near there but fresh juices, drinks and vegetables have helped

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Will give juicing a try, she loves her fruit and veg and I’m going to try change her diet a bit more. We use a water app as she struggles to drink enough fluid, she’s just started gymnastics so I’m hoping this will help part way to rectifying her muscles. It is really frustrating as no one understands I can try explain to people but they still don’t get it and she hides it as best she can and so avoids going to the toilet at school and holiday care.

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I do understand. happy to talk on the phone if you like?

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have you had a gut/poo test? you can pay for them...it was quite insightful for us

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No didn’t know about this where did you have it done ?

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I saw a nutritional therapist and she recommended a company who did it. the gastro was horrible about it all and laughed at me for going to a therapist and having a poo test said I was throwing my money away but to be honest all he was doing was telling me to give her strong laxatives and sending me away for 6 months with no help. the nutritional therapist understood the problems, was brilliant and talked through her view which aligned really closely to what I thought was the issue. the doctors ignore me and push us down the constipated route...which I know it isn't. I had a new gastro recently and she said it definitely isn't constipation and thank goodness I ignored the doctor and didn't give her the strong laxatives..made me feel good although had no useful results since to help sort it. can give you contact details of 2 therapists we used who were both amazing and can do skype consultations so you don't need to travel

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That would be great thank you, my daughter was been given movicol, picosulfate and last time was suppositories that was where I stopped and decided to start my own way of doing things, I spend ages googling different things and asking in the local health food shop

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we had movocol and picosulfate but after the hideous reaction from picosulfate I decided it had to stop. she was sick a lot and screamed in pain...it was awful. so the nutritional therapists I used are linked here

charlottepicklesnutrition.c...

evekalinik.com/

They were both fabulous. The first was recommended to me by my friend who had bowel cancer - she was severely ill and they thought terminal but she has made a full recovery which is beyond belief but she puts it down to positive attitude and the nutritional support as well as obviously the medical care. Eve was the first person I saw and was amazing too - she ordered the poo test and when I first spoke to her, I cried my eyes out as she was the first person who took me seriously and had a sensible response to what I was saying. unlike the doctors who just kept telling me my child was constipated even though I knew it wasn't true.

as I say, things are a lot better but still not 100% there. long way to go. I am going back to both therapists to talk through the vitamin deficiency and the new diagnosis of incontinence to see what else can be done. I highly recommend them though. Worth every single penny.

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Brilliant thank you so much, I feel like we often get stuck in a rut and have to keep trying different things to make progress.

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the other thing I didn't put in is that her skin goes yellow quite regularly and she had black rings under her eyes...the nutritionist said that the rings are her body struggling to manage the toxins and absorb the vitamins. I am using vitamins recommended to us called tummyzyme...and magnesium and vitamin d too as a blood test showed a vitamin d deficiency which is apparently also linked to food absorption

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She doesn’t go yellow but struggles to manage her body temperature especially in winter, she’s really skinny and often bloated. Will have a look at vitamins thank you

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my daughter also horribly bloated often with a massive bloated stomach. I have, on the advice of the nutritionist, removed wheat and dairy and when my child has it she bloats and sometimes complains of pain. I theorise that she had an allergy that wasn't picked up and stretched her bowel and that is now the issue. I need to get the bowel and anus working again ... I found this niddk.nih.gov/health-inform...

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Thank you so much will try everything you’ve suggested will try the vitamins and also get some magnesium.

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We have also gone to a nutritionist who did poo and urine samples. They showed the bacteria in our son's gut was the wrong type and he wasn't absorbing Magnesium and b vitamins. My son goes grey under the eyes which apparently shows the liver is struggling with the toxins. We now use priobotic but depending on there bacteria content can influence the type of priobotic you use. The one we were originally using we were told it was not strong enough to help our son. We have seen a difference after following her advice. I have come to realise you need to come at this problem from a large number of angles. You can ask to be refered to cams which we are waiting for an appointment. Apparently they can help on the mental and psychological issues. In Shropshire there is a charity called BEAM which is meant to be helpful. Perhaps there is something like this by You.

Inhave found the use of a chiropractor useful. Can you let me know how you get on with Pilates as I have been considered trying something like this. Have you tried doing pelvic floors. My son does this now to try and strengthen things up.

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OOh that sounds so similar to us. what probiotic are you using? we are using mindlinx...whats the one you have? hadn't thought of a chiropractor but will let you know how we go with pilates. agree there is not one solution here. same about magnesium but we were told vitamin d...interesting..keep me in the loop. I'll do the same. I found juicing to be amazing

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I use mindlinx as well. We had to use two other products initially as he did not have any good bacteria to reduce the bad bacteria numbers to try and allow the good bacteria to establish. We are still going to our nutrionalist and she put our son on inulin fos aswell. This helps support the growth of beneficial bacteria.

Epson salts in a bath is good for them as it is high in magnesium and sulphur.

Another thing we were told to do was give our son prune juice daily to try and increase his fibre.

We find deep baths tend to help with the stomach pains. Swimming we find is beneficial. When my son was really blocked we found this helped us get some movement. Another thing to try is a gym ball.

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This sounds just like my little girl who is 6 also. it's awful isn't it, I'm also so scared of the bullying when she's older. I'm fighting for more emotional support too. I just don't know where to turn or who to go to. People don't see it as a high priority do they! My little one has already had comments and been laughed at at school and she's only in year 1!

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mine thinks she is the only one in the world like this and it makes her really sad. and me.

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Mine too! She refuses her meds because “no one else has to take medicine!” Heart breaking isn’t it x

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poor little thing. they aren't alone - it just feels that way to them. are school helping? they gave my little girl access to the disabled toilets exclusively so that she didn't have to be exposed to the other kids as that was worrying her

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My son was like this for years, he would poo every day but would also soil every day. I thought there is no way he can be constipated. I took him to out GP before christmas and he said he was definitely constipated. And that because it had gone on for soo long (hes 9 next montj) he didnt know when he needed a poo anymore. He prescribed movicol to start taking on boxing day 2 sachets, them increase by 2 sachets every day. It was running out of him. After 7 days we went back to see the GP who said all his poo had come out and to keep him on a maintenance dose of one sachet every day or every other day. This has worked wonders for us.. no more soiled pants, no more smelling, i just wish i had taken him earlier. X

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I am totally lost to my daughter is 4 and won’t poo, laxatives make life worse!! It has become such a problem, we to have been to see doctors hospital appts etc etc as a family we are so lost :( I’ve never experienced anything like this. :( there is no magic pill it seems but things are getting worse.

No feeling of weather she has poop or not constant soiling 20+ a day. Crying/ frustration. :(

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