Need help with sons bowel problems

milliemonster

I am at the end of my tether with this now and really need some advice.

My 9yr old boy has a thyroid problem since birth and has never had control of his bowels, he has never had a regular bowel habit and can go from being constipated to loose, doesn't go every day etc etc.

We see his paediatrician twice a year who put him on movicol when he was younger and in view of his thyroid problems is very keen to ensure he opens his bowels properly every day, but we just can't achieve this.

At our last appt in Nov, he increased his sachets to 2 per day but this has made no difference and I am now very concerned as this is affecting his self esteem and schooling.

He is unable to control his movements at all, even when not constipated and having a regular movement, he says he doesn't get the sensation until the last minute and then rushes to the toilet to go but can't hold it. When it's not a proper formed stool and a bit on the soft side (sorry if TMI!) he just does it in his underpants, and doesn't even bother going to the toilet.

I am at my wits end as it's now a daily occurrence that I suddenly get the 'smell' or can see the stain eeking through his trousers and have to tell him to go to the bathroom to clean himself, he won't tell me why he doesn't go to the bathroom, he says he doesn't know, he seems happy to sit in it even in front of his friends, but at the same time he is embarrassed by it and refuses to let me help clean him up. I just don't know what to do about this.

I did take him to the GP as I wondered if he had some sort of dysfunction with the sensation to tell him he needed to go or the tone of his anal muscles but GP said this is unlikely.

I know this kind of thing is very common as I have done a lot of reading, but i just don't understand how he can sit in his own poo at 9 years old in front of his friends at school (who have started to notice) even at the dinner table, it's not fair on the other kids.

School have been great, they have sorted out the disabled toilet at school for him to use, he has his own clean things in there discreetly to use and a bin provided that school have bought for him to put dirty wipes in. I bought special wet wipes for him to use.

We have tried sticker charts, rewards (giving him 50p each time he manages to go and do it on the toilet and not in his pants) etc etc but nothing works, we usually have a mess at least once a day, the amount of underwear I am going through is a nightmare. We have tried ignoring the problem, not making a fuss, making a fuss!, telling him off, being reassuring etc etc over the years but nothing is making a difference at all.

We even had an episode last week where he woke up crying in the middle of the night because he had poo'd himself, this is surely not normal at 9????

Has anyone got any advice on where I go from here? He just seems to have accepted that this is how he is and there is nothing he can do about it, our next appt is in June so I am planning on doing a food diary and a bowel movement diary on him for a month before we go to show his consultant to see what suggestions they have next.

Please help!

butterfly72

I'm sorry i dont have any ideas, but does your local trust have a childrens continence nurse specialist that you could contact?

ognum

I can see this is causing you and your son a lot of worry.

I think you should be getting a referral back to a specialist not looking for help on an international forum.

Sorry I would not be expecting my sons health to be managed by unqualified strangers on an Internet forum.

This is not meant to be harsh, there are things that should be managed by spica list help and I am worried about you taking ideas from a forum to try to sort out your sons bowel issues.

Jo84_2

ERIC helpline - 0845 370 8008 - Monday - Friday 10am - 4pm Website - www.eric.org.uk and www.trusteric.org (for young people) Email: [EMAIL="info@eric.org.uk"]info@eric.org.uk[/EMAIL]


[EMAIL="info@eric.org.uk"]Education and Resources for Improving Childhood Continence. ERIC is the national charity that provides information and support for children and young people under 18 years of age with continence issues and their families.[/EMAIL]


Hope this can help you and your situation. Good luck


JoJo

[EMAIL="info@eric.org.uk"]
[/EMAIL]

milliemonster

Thanks everyone, I am a nurse myself so I'm not necessarily asking for medical advice as such, I guess just to see if anyone has been through anything similar with their own child or even themselves when they were younger and can offer any advice, or something I am doing wrong or not thought of?

No he definitely won't wear pyjama pants, anything 'nappy' like he just sees as babyish and there is no way I would get him to wear them. His paediatrician appts are to keep a check on his thyroid, but they always specifically ask about his bowels too as it can be a related issue.

we did see the school nurse for a while when he was in reception as at the time he was unable to clean himself up being so young and I would constantly be called in to clean him as obviously the teachers weren't allowed to do it (and I wouldn't wish that job on them either!) but it hasn't made a longer term impact to be honest.

He has no problems with his waterworks and never wets the bed, but when it comes to soiling, he just says that when he gets the sensation he can't hold it.

I am going to ring my GP in the morning, we have had 2 soilings in the last hour since he came home from school. I am tired of my bathroom being a mess, I have had to throw away a laundry bin as it was stained from his underwear, I frequently find stains on the walls, light switches etc as he won't let me help clean him up, but he doesn't do a very good job as he's only 9!

They did test him for coeliacs but it has come back negative but i just think something else is going on, I worry as he has 2 years left at primary and can't begin to imagine how we will cope at secondary like this.

julie03

we have the same problem my son is 9 as well. we are waiting for a referall to the incontinence clinic, and the bedwetting clinic
my son is mildly autistic, has dyspraxia and hypermobility, i am also fed up with the smell, my son has to wear nappies at night still so goes at night then sleeps all night in it and ends up with it all over his hands

sorry havent got any answers but maybe ask to be refered to an incontinence clinic.

kate1986wales

I can really sympathise with you as have a child who has had exactly the same problems although he is younger so I guess easier to deal with.

My son is nearly 4 and has had constipation/soiling ever since we took him out of nappies at about 2. He developed a massive fear of opening his bowels. This in turn created a viscous circle of him holding it in, refusing to go to the toilet and ultimately making him more and more constipated. This would result in him either soiling, or screaming in agony on the toilet some time later.

The soiling which happens to your son could be the result of 1 or 2 things. When the body gets so constipated, it literally 'overflows' simply referred to as 'overflow'. This is when the bowels are so full that runny poo literally leaks out (sorry too much detail) and the body has no control over this. My son has this when seriously constipated.

Similar to your son mine has at times just soiled himself and said he couldn't feel it (not overflow, but a whole bowel movement) this normally happens after having bouts of severe constipation where the bowels have been so severely stretched that the feeling of needing to go has desensitized.

My son has also been put on movicol which we have found a godsend, but we have to be very consistent with giving it to him otherwise the viscous circle starts again. He is doing really well now, and is getting a lot more confident in going to the toilet, as it was ultimately the fear which caused the cycle of constipation, pain, soiling etc. We have found getting him into a routine of going crucial, this in turn stops the constipation and the soiling. We normally have to tell him when to go/take him otherwise he would just hold it.

Is your son on Movicol now? Did it help when he was younger?

daska

You have my utmost sympathy, incontinence is horrible to live with, whether it's your own or a family member. Have they tested for any other allergies? One of my youngest cousins had exactly the problem you describe and I also have the problem of literally not knowing until I smell it or become itchy - sorry if TMI LOL - I'm currently experimenting to work out whether my continence problems are due to grain, gluten, belladonna or, it seems possibly some combination of the above. My cousin's problems are definitely caused by the belladonna/nightshade family which includes tomatos, potatos, aubergine, chilli, pepper, goji berries. I would suggest that you ask for referrals to investigate whether there is an alternative cause that hasn't been identified. If there isn't you haven't lost anything, if there is you stand to gain a significant improvement in his, and your, quality of life.

milliemonster

Thanks Kate, my son has never had a fear of going to the loo, he doesn't really seem to get constipated now either, he is on movicol and has been since he was about 4 but it doesn't make any difference, we are consistent with giving him it, he has one sachet at night and again in the morning, he never has any pain passing a stool and he never has to strain, what I find so odd is that he can be with you in the same room and he makes no obvious outward sign that he is passing anything, you just suddenly get the smell and ask him if he's done one and then he owns up

milliemonster

Thanks Daska, I do think it is something to do with his diet, he quite clearly doesn't have a normal bowel habit and I do think his diet has something to do with it, will ask about allergies next time we re at the hospital.

Person_one

milliemonster wrote: »

I did take him to the GP as I wondered if he had some sort of dysfunction with the sensation to tell him he needed to go or the tone of his anal muscles but GP said this is unlikely.

That's all he did? Just said it was unlikely?

It wouldn't be pleasant for your son but you can test anal muscle tone in about two minutes with a gloved finger, surely the doctor should have at least offered to do this or to send you to a specialist to do this just to check?

I'm sorry you're going through this, it must be so hard, I'd go to another GP I think or ask for a referral to someone more qualified.