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incontinence due to constipation with overflow

(30 Posts)
shortpants Tue 26-Feb-13 10:21:47

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

lougle Tue 26-Feb-13 10:38:03

Hi shortpants

Firstly, yes, it would be classed as a disability in terms of DLA, because DLA for children is about care needs that are above and beyond those of a typical child of their age. If you are literally having to clean him 15 times per day, then you may even get middle rate care for him. If he has some awareness of his need to go to the toilet but can't get there in time, you may even qualify for the mobility component.

Secondly, you need to go back and get reviewed regarding the quantity of movicol - that's a hefty dose and if your DS is now going 15 times per day, you may be able to lower the dose slightly.

Thirdly, are you having to go into the school to change your DS? It's not true that they can't physically clean him due to child protection issues. You need to talk to the SENCO and then talk to the SEN team at your local authority.

If you feel comfortable to state (or PM) your Local Authority name, I can do some digging for policies for you.

ComeOnYouTwo Tue 26-Feb-13 12:11:54

My ds2 has had very much the same problem that you ds. Very bad constipation from age 18 months, nothing done until he was over 3yo and then still a lot of problems of faecal incontinence when he was using Movicol.

I would second what louge said.
- Go and see your consultant (NOT the incontinence nurse, even though the can be really really good at their job) and explain the issue. I found that Movicol seem to be good when the constipation is with hard stools as it softens them but not as good with a child who isn't going vey often, has some overflow issues but some soft stools (The type that are so big they could block the toilet).
- School CAN change your ds. At my dc's school, they automatically put 'faecal incontinence' as a disability on ds2 form. I didn't even have to ask for it. They also helped ds2 to get changed, took him to have a shower etc... He was in Y1 at the time so similar age than your ds. I am sure it would clear to anyone that he cannot do that on his own at that age and they can hardly ask you to come 10 times a day. You might as well take residence at school!

Re the light at the end of the tunnel. Yes there is a light! ds2 has no issue at all now and it has been the case for nearly 2 years. The last time he had some soiling issues at school was at the end of Y1.
I have to say we gave up on Movicol (In my eyes it was making things worse as the soiling was much much more important with that medication than wo). And we used herbal remedies instead (We found a qualified and registered herbalist who had a good knowledge of working with children). Even though it took some time (about 1.5 year to completely clear) it was worth it and we haven't looked back.
The reason for that move is that the research is actually quite shaky re the use of Movicol and laxative for constipation and children. The children who still had problems 18 months or 2 years after starting treatment usually still had problem several years down the line so we though we had nothing to lose to try something completely different.

If you want more info, you can PM me.

Writehand Tue 26-Feb-13 14:34:04

On of my DS's had very much the same problem. Constant massive constipation until he was over 5. When the poo emerged it stank particularly strongly due to having been held inside the poor child fermenting away.

This is my experience -- and I may be completely off-beam -- so take what I say with a pinch of salt but..... And I'm sorry it's long, but it needs to be. Here goes:

We went through horrible years of treatment with Movicol, enemas and various other laxative preparations. My DS always wore pull-ups, and he often stank. He was admitted to hospital for brief stays for enemas and so forth. Not only did he not get better, but he found the whole process of having things repeatedly shoved up his bottom so traumatic it was a horror for both of us.

I pushed for a referral & we were sent to St Thomas's, the London Teaching Hospital. They did motility testing on him, as well as a long psychiatric assessment. The motility test involved him swallowing lots of tiny pieces of plastic that they could track as it passed through his gut by doing scans.

Turned out my DS has a variant of Hirschsprung's disease. Essentially his bowel lacks some of the nerves that respond to create peristalsis. Using more sophisticated scanning equipment than our local hospital did, they showed us that the plastic took days to move, and that my DS had soft non-impacted faeces backing up right to the top of his large intestine and that this seemed to be normal for him. The plastic moved far more slowly, with times when it hardly moved. Completely differently to what you'd expect in a normal gut.

Treatment was by firstly stretching his anus under general anaesthetic. A combination of far too many enemas and his own desperation to hold his poo inside had made his anus far too tight. They eased it up, and stretched his rectum a bit too. The doctor said part of the problem was the enemas, which had mucked up any natural sensation to poo he might have. The trouble with Hirschrpung's disease is that the normal sensations we all have that tell us to open our bowels are either very faint or, if you're unlucky, completely absent.

The next stage was teaching my DS to manage his own bowel. Hirschprung's disease can be very serious, but people with mild cases like my DS can learn to live with it.

The doctor explained to him -- my DS was 4.5 at the time -- that he would need to learn to "listen" for any desire his bowels had to move, and to go to the lavatory in response to even the slightest message. He told him to sit and wait, and be patient, and to expect a very, very large soft poo. He should not get up when it finished, but stay quietly, as more might easily be on the way if he gave it time.

The doctor stressed that bowel movements would not happen every day or even every few days, but that the most important thing was not to feel pressured to poo more often, but be confident that as long as he started concentrating on his bowel he would be able to develop his own pattern. He just needed to be determined and pick up on the slightest urge. The doctor as very firm that there was no need for daily bowel movements, as previous doctors had said. Once a week was fine. My DS had a mega colon, which stores huge amounts of poo.

The psychiatric angle turned out to be very important. We were told that, unlike my DS, most of the children with faecal incontinence on the ward were not suffering from anything specific, but that the incontinence itself had become a habit because it gave the child control.

A child might have a reason to want a great deal of maternal attention -- after a divorce for example -- and an episode of severe constipation might have shown a child how to gain all the attention the child yearned for. Most of the kids used incontinence as a way of ensuring they kept their mothers by them. The incontinence meant they were not forced to separate from their mums for any length of time -- going to school and self-toileting, for example.

The key diagnostic indicator from the psychiatrist's pov was the child's feelings about the incontinence. He said "If you or I lost control of our bowels we'd be absolutely horrified. We'd be hideously embarrassed. Well, when you interview these families, the parents are naturally desperately worried but the child seems pretty relaxed about the situation. If the child isn't very upset about what is a very humiliating situation we know there's a behavioural issue."

This is by far the most common cause of prolonged faecal incontinence in kids and, if it rings any bells with you this may be helpful. Exactly how distressed is your DS about the smell and indignity? Is there a possibility that the initial real illness has turned into a way of keeping you close?

My DS was terribly embarrassed, and desperate to stop it happening. Having no psychological cause or element simplified things. The solution was by getting my DS to understand his own bowel.

Amazingly, the doctor's careful explanation to my little DS (remembering how young he was) took root. My DS took it all in with great concentration. He learnt to manage his bowel. He was so proud when he managed it, and he did it all by himself with the loo door shut. He became very private about it, and very soon stopped talking about it at all. He stopped taking laxatives, but when he does use the loo he passes the most enormous amount. He goes about once a week. He doesn't even think about it now. It's just a fact of life.

Maybe once every couple of years he'll need a dose of senna. He needs at least 8 tablets to get a result, because the nerves in his bowel respond so sluggishly.

Sorry this is so long, shortpants, but I hope this is helpful. It might be relevant.

shortpants Fri 01-Mar-13 18:23:07

thank you very much for the message. its good to know that im not alone!!!
i have taken my son to the doc again this week. they have reduced the amount of movicol to two sachets a day. very quickly my son has blocked up again so not too sure what to do next. how do i get it classe as a disability as the doc doesnt class it as one????
as for the school, they are still stating that he needs to clean himself up so he has to have a box full of wipes, pants, trousers and relevant parafanalia that i have to supply/ there isnt a shower on sight. i cant get there everyday as my uni is an hour away adn sometines there just isnt anybody available. its a complete nightmare.
can i ask, what is middle rate care?
i am having a meeting at school woth all professionals to do a caf. having as much info as i can would be good. its very kind of you to dig. the local authorith is herefordshire.

shortpants Fri 01-Mar-13 18:26:33

thank you for your message. wow, you have been through it, gosh.
nut this is what im concerned about, that there may be a physical disability inside like what your child has. but the docs dont seem to want to test for anything like that. i do worry that there may be a problem like that.
the movicol has made things so much worse so now the dose has been lowered to 2 sachets a day, however, if he blocks up again, which he is doing, then he has to go back onto 12 a day. its a nightmare...

shortpants Fri 01-Mar-13 18:28:49

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...

Writehand Fri 01-Mar-13 18:30:39

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.

ComeOnYouTwo Fri 01-Mar-13 18:38:25

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.

lougle Fri 01-Mar-13 18:44:55

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

shortpants Fri 01-Mar-13 18:45:05

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.

shortpants Fri 01-Mar-13 18:46:47

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 Fri 01-Mar-13 18:51:25

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....

Writehand Fri 01-Mar-13 19:11:02

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.

magso Fri 01-Mar-13 19:47:52

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.

shortpants Sat 02-Mar-13 13:52:46

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

TheLightPassenger Sat 02-Mar-13 20:48:09

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?

MerryCouthyMows Sun 03-Mar-13 13:19:51

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!

<<Touches wood that it stays this way.>>

He has been clean now for 3 weeks. grin

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

Writehand Sun 03-Mar-13 19:05:14

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.

magso Mon 04-Mar-13 11:55:04

I agree with Writehand.

shortpants Mon 04-Mar-13 18:58:05

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 Tue 05-Mar-13 13:22:36

Good luck!

Writehand Wed 06-Mar-13 10:19:16

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! smile

MerryCouthyMows Wed 06-Mar-13 13:25:07

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).

Toni27 Wed 06-Mar-13 13:38:02

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

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