incontinence due to constipation with overflow

[shortpants]

hello ther. not sur if anyone can help. i have a wonderful 6 year old son, who at the age of 14 months had a bowl prolapse due to being significantly constipated because of being on a soya based formula milk because of an intolerance to dairy. since then he has had no end of problems woth going to the toilet. in 2010 i took him to the doc's after having years of no one listening to my concerns baoput his weight and his toiletting issues and they referred him to a consultant. he was under consultant care for 18 months. at the momen he is on a medication called movicol of which he has to have 12 sachets a day. this of course has increased the amount of accidents a day. my daily life consists of cleaning my son up to 15 times a day because he has no messaging system to let him know when he needs a poo. this is driving me crazy as i am trying to hold down a degree at uni full time, look after my other child, live in two places at once and address his problem in school, who are supportive and help as much as they can but cannot physicall clean him due to child protection issues. is there anyone out there experiencing the same as me? is this classed as a disability? and is there a light at the end of the tunnel?
this may only be incintinenece, but until you live with someone who has incontinence quite severly and needs physical care throught the day everyday it is hard to gain an insight into how stressful and restricting it is for the whole family. i cant remember the last time we went out for the day!!! please help

[clareoakery]

Hi I know how you feel my son has had this problem since birth. He saw a peadatrician when he was younger when he was in junior school I was called into school many times through the day to change him or take him home to clean him. No at secondary school it's no better. In fact worse he has seen another peadatrician who sent him for scans to find that he has Colon of the bowel his clothes are stained from the movical and even have leakages at night on bed sheets. Some days he can not get out of bed as in too much pain in stomach. Now school has assigned support worker Aarhus has effected his school life for around 6 mths as this is when has started to get worse.

[hel23]

Hi just read your post my son is 5 and am going throw the same he as to wear nappies and he in school all day and I worrie cause when he as a overflow it smells bad

[Toni27]

Thanks guys, yes I find it bizarre that so many of us are experiencing the clay like poops too. I'm hoping our son will grow out of it as his tummy matures. I did try going dairy free and then gluten free but it didn't make a jot of difference. My friend had allergy testing done by clarion health for her son, he had to hold something that sent electrical waves through him apparently and it came up with results saying he shouldn't have yeast. But her son does not have asd and I don't think our son would sit through the test. I'm thinking of trying to give it a go tho as our friends sons constipation has been cured. But my son doesn't have constipation on movicols he just won't go. I wish I could help him get over the fear so much.

[magso]

Well done shortpants! And a disabled loo and shower will be useful for future children and staff too.
I don't know what to suggest on dose - this is where a specialist nurse would be useful! It really depends how long ago he last went. He may need other medications such as senecot (only if prescribed!) to give the stimulus to go - it all depends on why things are not regular. If its only a few days since he last went I would go back on the previous dose of movicol (assuming it was enough to keep him regular with softish stool) plus an extra sachet (ie 3 instead of 2). 12 would be too much at least for my son. Longer and it might need more and support from the GP.
Toni we were told (by specialist doctor) that it might have been pain that set up a fear of going (ds had regular tears as an young child poor child). The idea then is to keep the poo soft so it doesn't hurt so much and the tear can heal properly and the child learn it is not painful. Of course children on the spectrum often have unusual or seemingly illogical fears. When ds was obviously in pain and feverish (as can happen with tears and running through) -we gave calpol.

[shortpants]

isnt it funny how so many oif us are experiencing this problem with our childen as yet each one as clueless as the other. it just goes to show what doctors consider to be a problemless disability. i read in this months nursing magazine that doctors and gps were going to raise awareness on constipation with overflow and the problems it brings however, i have recently learnt that even the school nurses are taking wetting and soiling off their list of jobs to deal with!!!!! crickey! my sons school ahve, after completing a CAF with the appropriate professionals agreed to putting in a disabled and showeer room for him as and when he has accidents. he has been off the movicol for a week now and has bunged back up completely. do i give a high dose to unblock him as the doctors suggests or do something else??? soooooooo effing confusing.
Hirschsprung's Syndrome seems to relate quite alot to my childs bowl movements but not sure to bring this up with the GP a a fear of being made to feel like an eratic mother with munchausens does not appeal. but who wil stick up for my son if i dont?

Toni27, not sure what to suggest. how old is your son? can he still get away with wearing a nappy or pullup? the feeling of padded comfort might be helpful as a short term measure?? lots of childen do have fear of pooing but normally overcome that in time. hoipe this helps. oh, have you tried allergy testing???

[shortpants]

isnt it funny how so many of us are experiencing this problem of soft stools that are massive, clay like mass skid marks in the pants and no doctor seems to be bothered!?! some awareness has to be made. i did read in this months nursing magazine that doctors and gps are going to raise awareness of constipation with overflow and the serious problems it brings to the child and the familly a a unit. i have finaly got somewhere with the school as, after a meeting with another professional, and proiducing a caf, a disabled and toilet room shall be put in in septembe to deal with any accidents that he may have. however, this

[Toni27]

Hi my son who has asd is so say constipated too, he takes 2 movicols a day now but has had up to 5 a day in the past to clear him out. He withholds his poops and I have never known him do what I call a log poo, it's always just been either little bits of clay like poop when he was constipated (which was soft) or now he's not constipated due to his movicols it's liquid poop. He does not have really hard rabbit dropping poops tho like I would expect to see in a child with constipation. His main problem is the withholding he will stand stiff as a board holding it in and only a little escapes at various times during the day. He's so terrified to go to poop. As soon as he could stand holding on to furniture he has withheld so he has never naturally squatted down to do a poop. We do try Nd pull him down to sit on our knee when we spot him withholding so the poo comes out in his nappy this makes him cry because he hates the feeling of pooing and it being on him I think but we have to do it as if he hasn't cleared out his behaviour is greatly affected. I have no idea of how to get him past this fear. He won't sit on the toilet or on the potty to try. I did get him to sit on the potty this morning as he wanted biscuits so I said he had to sit on the potty, he sat and ate his his biscuits on it but with his pants on.
Does anyone have any advice for me?? I really want to toilet train him. He is 4 this month. Was your child similar? How did you get them over the fear? Thanks

[MerryCouthyMows]

Write hand. You have perked my interest. My DS2's stools have NEVER been 'rabbit droppings', but they ARE like soft/normal consistency massively wide ( to the point where he often grazes slightly when pooing), and hugely long.

They look like something an elephant would be proud of!

I often have to fish them out of the toilet because they are too wide and long to flush.

He also seems to have very slow motility. Erm, TMI warning (daft on a poo thread but hey ho). If he has sweetcorn on Monday, it doesn't come out until Saturday/Sunday...

He also complains that he cannot feel when he needs a poo. He says that he doesn't get any feelings in his tummy, and he doesn't get any feelings in his bottom to tell him when he needs to go.

We are having some success (as in, clean pants) with a maintenance dose of Movicol, but he still doesn't go every day, and when he does, they are effing enormous. And I have to TELL him regularly to go and try, too, he doesn't feel it himself.

I'm saying the Movicol is successful only because we now have clean pants.

But in now concerned that he has something else going on. Tbh it's been concerning me for a couple of weeks - maybe the Movicol is hiding something more serious.

If I stopped the Movicol today, within two days (if not within 12 hours) he would go back to how he was before. I have tried, he had six months off Movicol before and it went straught back to how his BM's were before. Or weren't. This concerns me because I am starting to think that the Movicol might be masking another issue.

What would you suggest (GP useless).

[Writehand]

im not sure if my child is constipated ever as his stools are long and soft, not a bunch of grapes as the meds put it!!!

That's what I'm getting from your description, Shortpants. My understanding is that huge soft poos aren't typical constipation. Constipation produces rock hard poo, like a bunch of grapes or little rabbit pellets. The doctors at our local hospital told me my DS's very smelly overflow was escaping from behind large concrete-like stools they assumed were sitting in his bowel but when they did a scan at St Thomas's there was no hard stool, just a great mass of soft stuff that his body "couldn't be bothered" to expel because he was lacking most of the nerve endings in the lowest part of the gut. The soft mass went up to just below his rib cage!

Retaining lots and lots of soft poo suggests that the products of digestion are not being moved down through the gut into the rectum, that the process of peristalsis isn't working.

I know Hirschsprung's Syndrome is pretty rare, but I'm not sure how rare variants of it are. Maybe mild versions are more common. HS is a very serious condition, it can kill, but the mild version (with only some of the nerve endings missing rather than all of them) that my DS has didn't require surgery.

Good luck, Shortpants! Let us know what happens!

[magso]

Good luck!

[shortpants]

i am in the process of demands! tomorrow i will be sitting down with the school and making a caf with them. i will also have some demands here also. yes my son does deserve better as do we all as a familly having to deal and cope with it. it affects all of us. i have had no support prior to coming onto mums net so thanks to everyones helpful suggestions and supportive comments. i have been told that it can be normal for a child at the age of 6 to experience constipation with overflow although im not too sure as i have been in child care now for 14 years and have never experienced this before...
also, im not sure if my child is constipated ever as his stools are long and soft, not a bunch of grapes as the meds put it!!!
changes will and are going to be made as of tomorrow and i am very hopeful....
watch this space...

[magso]

I agree with Writehand.

[Writehand]

What strikes me reading this, Shortpants, is that your DS hasn't been treated with anything like enough urgency or priority by the NHS.

Initially, we all go to our GP to sort out health issues, whatever they may be. If no resolution can be reached via GP intervention, and given that the problem (whatever it may be) is medically complex and likely to be subject to amelioration, the next thing is a referral to a specialist. If whatever the specialist suggests/diagnoses doesn't provide a solution you'd expect alternatives to be tried and, eventually, to be referred elsewhere, and so on until the problem's sorted.

With my DS we started at GP level, were quickly referred to our local hospital and, with my DS still soiling and after giving the local hospital a good year to sort it, I asked for and was given a referral to a teaching hospital. The bloke who finally came up with a cure was, I was told, a world expert in children's bowel function. The process of moving through the NHS decision tree didn't stop until the problem had been sorted. Part of this was me pushing: I wouldn't stop until someone found out what was going on and how to handle it.

Faecal incontinence in a 6 year old should, I'd think, be perceived by medical staff as a very significant problem in lots of ways and not one the parents (or the child) should be asked to accept without trying all the routes possible.

It doesn't sound as though your DS has had all the help that's out there by any means. Had we not been referred to St Thomas's I've no idea how long we'd have struggled.

If I were you, I'd be getting really demanding and assertive now. You are being fobbed off and your DS deserves better.

[MerryCouthyMows]

12 sachets a DAY?! Surely that should just be a very short term measure, to clear him out, and then the dose should be gradually dropped to a 'maintenance dose'.

You really need to see someone from the incontinence clinic, this ISN'T right.

My 9yo DS2 also had issues with overflow because of slow bowel motility because of Hypermobility and hypotonia.

He WAS on a very short term dose of 12 sachets a day, but only for a week, then every other day we dropped a sachet.

He is now down to a 'maintenance dose' of 2 sachets a day.

And after 9 weeks on just 2 sachets a day, he is finally clean!



He has been clean now for 3 weeks.

Hopes she hasn't jinxed it by typing that!!

[TheLightPassenger]

I agree with magso re dosage, the leap from two a day to twelve sounds v difficult, sounds like you cld do with getting more specialist advice from a paed and continence nurse, obv each child is different but continence nurse for my child advised to up from two sachets a day to three if he hadnt been for over 48 hours which touch wood has worked quite well. Have you been given advice about fluid intake and increasing fibre in foods?

[shortpants]

have taken to making cupcakes and putting movicol in that the last two days. seems to be working.... he actually went last night! hooray

[magso]

I found encopresis one of the more difficult and distressing aspects of caring for ds (who has ASD/ADHD and LD) I agree - a specialist paediatrician with an interest in constipation is needed. Usually there is also a constipation nurse for day to day advise on tweaking medication doses. This was most helpful for us.

My son had major bowel problems and I too had to constantly go into school to clean him up. The school nurse was able to help by organising suitable in school support ( I had to sign permission for certain staff to assist as ds was simply not advanced enough to manage alone). Once staff understood it was a medical problem, not catch/laziness/bad parenting they were more helpful. But things did not really improve until ds was referred to the'poo Dr' as we called him. It has taken many years but finally he is mostly there, although still needs a low daily dose of movicol. It took a while to get his daily dose correct, and then every so often we could reduce it a little ( half a sachet at a time) as his system improved.
I presume the 12 sachets a day are for faecal impaction - its a huge dose. I found once the initial impaction was sorted we did not need quite so much to get things back on track after a short term set back. It sounds like 2 sachets a day is not enough for maintainance ( I am speaking from my childs experience so this may not be right for your child). I remember having to experiment with doses (with the clinics support) until ds was going regularly without getting either extreme. I think he needed 4 a day at first rapidly reducing to 3.5 thenventually 2 via half steps, just to give you an idea of the range. I am every child is different hence recommending getting the support of a constipation team.

[Writehand]

CAFs can be very helpful, but they depend on who draws them up and what their agenda is. If the SENCO writes it and his/her main objective is to ensure the school don't do your DS's toileting it'll be all in the CAF. As a system it seems to me too easily decided on the basis of what the professionals want to offer.

I was hugely disappointed with mine. I, with the support of one of my DS's health team, rejected it completely. Refused to sign. So we never had a CAF. But I know they can be really good if the various people are prepared to help. I'd be on the alert for attempts to wriggle out of doing anything useful when you see them for the meeting.

[shortpants]

im doing a degree in social work and am trying to get as much info as i possibly can to gain support for my son. lets hope....

[shortpants]

oh thanks for that i will take a look. have a look for schools in the ross on wye area
do you not think a caf is the right way to go about getting a proper care plan together?

[shortpants]

he was under consultant care a while ago. i have asked to be put back but get a simple no!!
his stools are normal but massive and do block the loo! but what comes out daily is a mouse like substance that stinks to high heaven and this is whatb they call overflow... it really is unpleasent.
i would love someone to scan him an d have a look and i have demanded that but no medic seems to want to listen to me. i feel that unless i go private, which i can tafford, thyen im not going to get anywhere as i nfeel im not being taken seriously.

[lougle]

This Policy, from Eastnor school in Herefordshire indicates that staff perform the necessary personal care.

[ComeOnYouTwo]

Agree about investigation if you can manage to have someone looking at it.
Has your ds been referred to a paed? With that dosage of movicol, all the problems it causes wo solving any, I would have though that it was now a paed work, not GP. I would ask for a referral asap.

Btw Movicol is supposed to ease constipation by drawing water into the stools. If the stools aren't hard, it's not going to help.

[Writehand]

I would be careful of the CAF. We had one done about my other DS, who has hugely unstable diabetes, and to my horror they used it largely to try to get rid of as much responsibility as possible. The old "if in doubt, blame the parents" approach of which I have seen far too much.

A CAF is only good if you get specific agreement for input for other people. I can't see that the school can say incontinence isn't their problem. Good luck.

As the previous poster wrote, laxatives & Movicol are only really relevant if your child is truly constipated with hard painful stools. If you're getting big soft ones it sounds more like my DS's problem and needs more investigation.

[shortpants]

thanks so much for that message.
i used to work at the school so it wasnt a problem but it really is now. he cleans himself up, but as you can imagine and are probably very aware of, how well can 6 year old clean himself up when the overflow is so hefty that it is a mass puddle gathering in his shoes?? the nschool do not have a shower either so nightmare...