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Advice on 5yo and ongoing, seemingly insolvable chronic constipation

(69 Posts)
accessorizequeen Sun 26-Apr-09 19:56:20

DP and I can hardly talk about it now without both wanting to cry really and despite consulting all sorts of professionals it's not really got any better in over 2 years.

DS1 is 5.4 now. He soils his pants most days, today it was about 4 times (I lost count). He was diagnosed with chronic constipation nearly a year ago after problems soiling since he was 3. Dr prescribed Movicol, firstly to clear an impaction and then as maintenance until his colon recovered sensation. He started school last Sept and had a 3 week run of no soiling at all. Which made us all think that colon was ok, and he could control his poo. Accidents started again after that though, and nothing that we do makes any difference for longer than a week e.g. increasing Movicol dose, decreasing dose, huge congrats if he poos on the toilet, special toy for sitting, rewarding sitting, star charts, confiscating toys, daily chats. We kept a diary of his diet for 2 weeks and were told it was near perfect. All they've suggested is more drinks during the day which he largely won't have.

He usually refuses to go to the toilet after a meal. He sometimes refuses to acknowledge he's had an accident, he rarely volunteers it, occasionally refuses to go and clean it up or be cleaned up. He admits he's not trying very hard and promises to try harder (but doesn't). He seems to think that other boys his age do the same thing.

We have seen to date two paeds (one specialising in this, one endocrinologist to check that he didn't have coeliac disease etc), Bowel clinic, school nurse, GPx2 and a Constipation diet clinic. They all say to keep him on Movicol even though with even half a sachet a day he has such loose poo that it's leaking everywhere. We took him off it entirely a few weeks ago and he now has an impaction which seems to have cleared now. Everytime I see a professional about it I get even more confused and frustrated - they all keep saying be positive, reward good behaviour (there isn't any really to reward), it will come right. Try movicol in the evening, try movicol in the morning, try splitting the dose, what about a hot drink the morning (won't drink it), do you have a start chart, reward sitting etc etc etc.

We have 3 other children under 5, our dt's are only 7 months and we are really struggling. Everywhere we go we have to change his pants, I always take several pairs. Half the weekend is taken up with him being sent upstairs to clean up. I don't think any of his friends' mothers want to have him over because they don't want to clean him up. It's dominating our lives and sometimes dp and I both get SO angry with him one of us has to leave the room and leave the other to sort him out. My father, who is a paed, insists that it's behavioural and that if he can hold the poo in once, he can do it every day. Last week, when we said he couldn't have his lego or any computer time if he had an accident, he didn't have any for 2 days. But then started all over again despite the same punishments.

I'm crying now just writing this. I have 3 others in nappies and I'm SICK of cleaning up bloody poo ALL day every day of my life. I'm sick of arguing with him bout whether he needs a poo, then that he's had one and needs to clean up all when I'm trying to feed a baby or get dinner on or spend some time with him. I don't want to punish him, DP sometimes refuses to read him stories if he's had an accident, we stopped him having an evening bath when he pooed in the toilet 4 days running. He's a lovely, sweet, funny little boy and all school see of him is poo. The nursery nurse glares at me most days (she has to clean him up and twice last week had to shower him down). I struggle to send enough clothes in every day when he can get through 2 pairs of trousers. I just want it to end.

Please, any advice?

muppetgirl Sun 26-Apr-09 20:10:52

You absolutely poor thing...

I would say and I am no expert, someone who is will no doubt be along soon smile, that it does sound like a behavioural thing more than a physical problem as he does seem to be able to control it.

He does seem to get a lot of attention from everyone, paed, school nursery nurse (no doubt teacher) you, dh, etc etc. Maybe no attentio at all, no comment just ourely functional in order to clean him. Maybe leave him he if doesn;t seem bothered, his friends will pretty soon tell him he smells (sounds awful but maybe a bit of peer pressure may help?) you are solving the problem for him at the mo and I think he likes that...

It will be uncomfortable for him if left so this may help sway him that to be clean is best. I would give up the rewards charts (they're not working so why do them?) and give no attention.

If my ds 1 -5- has an accident we do help him to clean himself but he is able to go to his drawer and sort himself out, no fuss. You sound like you have a LOT on your plate, what do you do with your ds 1 apart from clean poo? Not meaning to be rude to you at all you have my greatest respect for getting through the day with 4 children and 7 month old dt's!

Ignore me if I'm talking tosh, which I'm sure I am grin

muppetgirl Sun 26-Apr-09 20:13:25

Oh god, just re-read that and it sounds like I am thinking I can fix your very 'simple' problem. I don't think it's a simple problem at all and do realise it's a real toughy for you.

Celery Sun 26-Apr-09 20:20:03

I don't have any advice, because I am in exactly the same boat with my 5 and half year old daughter. Our experience is and has been almost identical to yours. I absolutely have no idea where to go from here either, but I just wanted you to know that you are not alone. It is the most frustrating thing I have ever had to deal with. I only have one other in nappies ( 3 yrs, nearly toilet trained ), and an 8 yr old.

My dd was toilet trained and clean for a whole year before the problems started when she was three. We've been dealing with this for two years now.

Celery Sun 26-Apr-09 20:27:25

I would say, we have stopped giving her movicol, because like you say, even half a sachet causes very very runny poo. I am currently giving her lactulose, 10 ml in the morning, 10ml in the evening. She is still witholding poo and soiling constantly, but every weekend, we insist that she goes bare bummed round the house. If she is wearing knickers, she will always soil them, but if she is naked waist down, she will go and sit on the loo rather than soil the furniture etc. This results in her going to sit on the loo every half an hour or so, and mostly producing tiny amounts of poo at a time. It's very wearing having to bum wipe every half an hour! However, occassionally, perhaps every fortnight, she will do a whopper of a poo. Basically 2 weeks worth of poo in one go. This totally worries me, to be honest, it's not normal or healthy, but at the same time, it's a relief that she has finally cleared herself out.

The other thing she does, is that she often totally clean at school, occasional soiling, but mostly holding it in all day, only to let it all out as soon as she gets home ( in her knickers )

accessorizequeen Sun 26-Apr-09 20:33:50

It is really good to know I"m not alone, thanks Celery. Well good in a bad way, iyswim! Yr situation sounds v.v.frustrating and no, one big one every fortnight definitely not right! Would combo of senna and lactulose work for her in that case do you think (as they accomplish same thing together as movicol does alone?)? Just a small thought. Are you seeing a consultant? Not that I've found any other than my dad helpful and he's in australia now anyway. Interesting that she witholds at school, ds1 nearly always does one at 3.45 on the way home arggh.
Muppet, didn't take it the wrong way at all smile Yes, you're absolutely right about the attention - a book we read suggested exactly the same thing which is why we started looking at 'consequences'. I've been fairly neutral about accidents for several months though and he doesn't care less if he's clean or not. He'd stay in stinky pants all day! He's already under peer pressure - called stinky DS1 at school by several boys. Hasn't made an iota of difference to him.

muppetgirl Sun 26-Apr-09 20:41:11

So sorry to hear that he's not bothered (I was a teacher pre ds's and would have hoped a good dose of peer pressure would have helped)

My ds does little and often, Last yea he had a form of glandular fever and had very runny tummy on/off for most of the year. Now he's better but does a lrge one in the morning and little bits throughout the day (today about 3/4 goes on the loo before the 'final' solution hit the loo water grin) very wearing when we're out trying to find a loo all the time. I have ds 2 17 months and am 29 weeks prgt myself...

He messes a tiny bit at school and is very upset by even the smallest poo mark on his pants but still insists on leaving things till th every last minute (jiggling and wiggling and general holding of bits) I am hoping it's just his colon re adjusting to a natural non-runny poo production line.

muppetgirl Sun 26-Apr-09 20:41:51

sorry spelling mistakes...

accessorizequeen Sun 26-Apr-09 20:43:44

grin at poo production line! I so remember being pg with dt's and constantly wiping ds1's bottom. I thought my back would break, you have my sympathies!

muppetgirl Sun 26-Apr-09 20:50:04

Did your ds have tummy troubles as a baby? How was he with potty/toilet training?

I ask as ds 1 was great with wees but took ages to get the poos in the loo at the time he needed to go. He also had colic as a baby very badly (I know some doubt the existence of colic but in our house there was something very real going on with ds 1's tummy!) He has also complained of tummy pains often so much we actually had him at A&E at 1am in the morning as he was screaming in pain. (I had an appendectomy at 5 and are paranoid about him not around him, he has no idea)

Just wondered if this is born out of previous tummy troubles?

accessorizequeen Sun 26-Apr-09 20:52:16

Just had colic, no tummy troubles that I remember. Potty training went ok, he just regressed when ds2 born six months later!

muppetgirl Sun 26-Apr-09 20:57:29

It's one of those situations where you can know the cause and even identify it's behavioural but you just need someone to tell you what the heck to do about it. It something that will actually work!!

That Tanya Byron (? is that her second name? she of the house of timy tearaways)
women might have answers...

Celery Sun 26-Apr-09 20:57:37

Yes, we are seeing a consultant at the constipation clinic at the hospital, but like you say, they just seem to push the movicol, and offer very little advice on the psychological aspect of it. We've also had advice from the school nurse and the health visitor, and we have tried all of their suggestions, and nothing has helped.

I really worry about her long term bowel health.

muppetgirl Sun 26-Apr-09 20:58:08

oh for the love of god I need to preview...

emma1977 Sun 26-Apr-09 20:58:38

Do you have a community constipation nurse available to you (or the 'poo lady' as she calls herself)? In my area, the GP or paediatrician can refer you to them for ongoing advice and support (not just for ds but for the family). They are often really good at dealing with the behavioural component of constipation and soiling.

Some children with a large behavioural aspect to their soling respond to psychology input- speak to your paediatrician as to whether this may be applicable.

DesperateHousewifeToo Sun 26-Apr-09 21:05:07

Are you really, really sure it is psychological and that he can control it?

You say he got an impaction again recently when you stopped movicol. Was that all cleared?

Ds (7) still has problems occasionally (we'll have a few good months and then it will all go to pot). He is always emabarrassed and so denies it although it is obvioussad

I try not to get angry but I know it is not his fault and then feel very guilty about it.

Last week when he had a very runny poo in his pants, he denied it but I was very matter of fact that it did not matter and we would pop him in the bath at home and he admitted it and was very upset.

It breaks my heart when it happens.

For him, I think drinking water is the key. When he starts back at school, he drinks less and takes him a while to build it up again.

Really, all I wanted to say was to be really sure it is psychological. The scenario you describe is so sad for everyone. Maybe go back to someone who helped out previously because I am sure plenty of people need extra support after the initial success.

If it is psychological, could you ask for a referrral to help with this?

Good luck. I hope for your sanity and your son's confidence, you can get on top of this again.

accessorizequeen Sun 26-Apr-09 21:16:39

Exactly, muppetgirl - but I dont think anyone is going to tell us what to do.
Emma, did just see a constipation clinic a couple of weeks ago. They had no interest whatsoever in the behavioural aspect (told ds to try hard for mummy to sit on the toilet. hmm). Quite disappointed by that as we'd pushed for an appt and waited months.
Celery, your situation sounds just the same, we're both going round and round in circles!
Desperate, no, no absolutely sure at all. Which kind of leaves us stuck as to how to respond to him. Being neutral makes no difference, rewarding him for success ditto, punishment ditto. What's left?
It breaks my heart too. I sobbed the day I heard boys calling him smelly at school. I sob several times a week about it. I adore him.

DesperateHousewifeToo Sun 26-Apr-09 21:34:38

Can you try to not get angry about it each time it happens? Whether psychological or a physical cause, it might help everyone remain calmer about it.

Easier said than done, I knowhmm.

Could you have a change of tack and reward him for sitting on the loo for x amount of time (whether he poos or not), drinking x amount of water a day and telling you if he needs help to change his soiled pants.

Try to think of something to reward him for that he can achieve easily and is definitely within his control. This might bring back some positive attention for him.

Does he have any one on one time with one of you? Could you do something with him each week. Maybe take it in turns with your dp? This is not a reward thing but time to do something with no interruptions - football in the park, cake in a cafe, etc.

Have never used movicol, is it possible to use a smaller amount than half a sachet? Maybe split the dose once it is made, or give it every other day?

Or maybe try lactulose instead?

accessorizequeen Sun 26-Apr-09 22:56:23

Do you know, I hadn't thought of giving him a star for drinking water before! Just encouraged it a lot and leave bottles of it around.
I think if we were to focus on one thing at a time it might make things easier, we've been trying to do everything all the time, all the suggestions that have been thrown at us one after the other. We can't keep it up, life's just too chaotic.
You're right, desperate, pick something achievable. I think that's what my dad said but we've seen so many people and they all say different things. I literally can't follow it all as usually I have one of the babies with me at the time, trying to feed etc whilst listening.
I prob. made it sound as though we're angry all the time, we're not, just now and again it gets to us. I did used to get angry all the time before I know it was constipation and I have tried v.hard since then to stay calm. Largely I succeed because I can see that underneath being showered down and glared at by a nursery nurse at school must be incredible awful for him and I don't want to be the baddie too. I don't like punishing him for accidents, that was dp's idea and it just seems wrong to me but went along with it as didn't know what else to do really. I'm going to ask him to stop, it's not working anyway! DS did point out that he had 4 punishments the other day and it wasn't fair and I was inclined to agree with him really.

cornsilk Sun 26-Apr-09 23:06:21

My ds was similar but at a younger age but still it was incredibly frustrating - I really feel for you. Could you bring him home at lunchtime perhaps to have a try after he has eaten?

accessorizequeen Sun 26-Apr-09 23:07:59

Not with 3 other dc's to look after really!

cornsilk Sun 26-Apr-09 23:13:37

Oh yes - blimey you do have your hands full.

accessorizequeen Sun 26-Apr-09 23:17:16

grin they're all gorgeous though smile

DesperateHousewifeToo Mon 27-Apr-09 10:05:48

I can only imagine how busy life must be for you!smile

Could you have a chat with the nursery staff and make it clear to them that what he is doing is not under his control (even if you are not sure yourself!). He has a medical condition that you are trying to deal with. Whilst it is not particularly nice for them either, they should not act disapproving of him when it happens.

Is he any better during the school holidays? I find ds is. Could you give him a week or two off school to try to get on top of it again?

I definitely agree that whatever approach you decide to take, you need to both agree on and be able to stick with.

Good luck. I really hope things begin to improve. I completely understand the range of feelings this situation makes you go throughsad

IrritableGrizzly Mon 27-Apr-09 15:23:37

My ds1 has suffered from constipation/soiling for years now, basically since he was out of nappies, and he's now 6.5. I've got no idea what caused it - don't remember any bad trauma or constipation that would make him start withholding. He used to insist on having a nappy on for a poo until he was quite big, 4 or so.

He does seem to be getting some control back but only if I keep up the 'routine' that the paed set for us, which is sitting on the loo 3 times a day for 10 mins or so, after breakfast, lunch and dinner. The lunch one is tricky as he's at school and although I remind him every morning to have a go, he admits he doesn't, so I sit him on as soon as he gets home.

He is quite often soiled when he comes home and I'm quite worried about him getting teased as he comes on a school minibus and most of the kids are older, but like yours he doesn't seem worried about them noticing.

The other things we do is a does of lactulose every morning, about 7.5ml, and encouraging him to drink loads of water. I do think this is very important, especially as we live in the tropics so he needs extra water.

I really think the nursery staff should be a bit more professional and not show him their annoyance - it must make him feel bad and it really is all part of the job, and I say that as an NNEB! It's not the most enjoyable part admittedly, but small children and poo are an unavoidable combination.

One other thing that has helped, and I can't remember where I heard this, is talking about the difference between 'hero poos' and 'sneaky poos'. This really caught my sons imagination. We talk about not wanting to be beaten by the sneaky poos and we have to help the superhero poos in to the loo to win the battle. Sounds really goofy like that but it honestly has helped!

Can't think of anything else right now! Best wishes to you and your son.

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