Advice on 5yo and ongoing, seemingly insolvable chronic constipation

[accessorizequeen]

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?

[suiledonne]

I'm glad to have been some comfort. I hope you get some answers at the GP. It is awful watching them struggle and be in such pain.

The paed never mentioned colon damage to me at all and dd had been constipated for a while before she started on medication as we tried to resolve it with diet. She was on the Movicol for about 10 months in all. It is a powder you dissolve in water - tasteless. I added it to a drink every day - she never even knew she took it.

The lactulose didn't suit her at all - it seemed to give her terrible tummy pains - she was in agony the first time she took it so we were relieved when the Movicol worked so well.

Is your son a good eater? I think dd's problem was that she had a very small appetite. She did eat fruit and veg but in very small amounts and wasn't keen on bulkier, fibre rich foods. Her appetite definitely improved when the constipation was under control.

[kitkatcadaverqueen]

Hiya, thanks for coming to talk to me

I spoke to a gp last night and she says that its most likely that his colon is already damaged, so he is having to let the poo slide out of its own accord - apparantly its your colon that allows you to push the poo out, he doesn't seem to be able to do that. I've been sitting him on the toilet the last couple of times he's pooed to try to let gravity help but it doesn't seem to be helping much.

The gp wants me to take him to my regular gp on monday. Sounds very positive tho hearing that your dd is 3.5 and doing so well. I just about crumpled when I read that it could take up to 6 years for the colon to heal. so thankyou thankyou for posting, also ds is on lactulose so i will speak to the gp about movicol.

[suiledonne]

kitkat - Is he potty trained yet? It can really help.

My dd1 suffered from constipation for a year. She got to the stage where she could hold in the poo for days as she was afraid to go following several very sore incidents.

The paed prescribed Paediatric Movicol which really helped. As it softens everything up she gradually learned not to be afraid to go.

The good news is now that she is 3.5 she hardly suffers at all and has been off Movicol for several months.

I think the biggest change came when she potty trained as just the position and force of gravity of sitting down to go really meant she couldn't fight it any more.

We found the Movicol worked for her whereas the lactulose made her worse.

[kitkatcadaverqueen]

bumpity bump.........

[kitkatcadaverqueen]

bump

[kitkatcadaverqueen]

bump

anyone about with info????

[kitkatcadaverqueen]

Hello, I am afraid that I might be about to join you all. DS1 is 22 mnths and for the last month has been pooing on average once a week, crying, trauma. Its awful, and really pretty much out of the blue.

For the last week he has been on 10mls of lactulose a day - split dose and it does seem to make them softer but not any more frequent.

Ifound a recipe on line for as they put it "babydraino" which does actually seem to help some its 1 3rd prune juice and 2 3rds apple juice.

He is exhausted and really not eating much untill he does a poo and then eats loads, doesn't poo for a few days and then stops eating again.

I'm going to take him into the gp on monday, but I'm now worried that he may have damaged his colon - he has just gone today after a 2 day break (which is good for him) but seemed unable to push the poo out. I originally thought he was unwilling to because it had hurt before.

any advice would be most welcome. I just looked into the epsom salts and atm I'm a little worried to try anything like that after my quick google, what should I ask of the gp? Should I ask for him to be scanned to check for an impaction?

TIA

[IrritableGrizzly]

I have been giving ds a supplement called psyllium husk, which acts to bulk out the stool and reduces the likelihood of having small leaky poos. He has 1 teaspoon a day mixed in with orange juice, and it seems to be helping a lot. He has just been away for the weekend with his dad (to Phuket - one benefit of living in SE Asia!) and hasn't soiled once. I was quite worried about him being away without me, but he has been fine.

One thing, if they take this supplement they must drink a lot of water to help keep everything moving.

I have just ordered a book for him from Amazon - "Clouds and Clocks: A Story For Children Who Soil". Not sure what it will be like, but it may be helpful to let him know he's not alone in having this condition.

[jabberwocky]

Bumping this thread again.

MelonCauli, that is an excellent point about using a stool. I heard someone discussing this on a radio talk show once and it did make sense that using more of a squatting position would be easier on the bowels.

[CrossWhy]

General advice on constipation is increase water intake and exercise. Senna should be totally avoided in children with a history of impaction. Oats are very good and healthy source of fibre and energy so if your child like porridge or can be persuaded to at least try it then this would be a good idea.

School can quite often be problem with children due to the toilet facilities on offer to them.

Natural triggers for the body to "poo" are waking and after eating. It is best if you can avoid "grazing" in your child and have them eat meals with no snacks (healthy snacks should be incorporated into the meal)

And most importantly don't get cross with your child.

[IrritableGrizzly]

How's everyone getting on? Lots of really helpful informative posts on this thread - even though I'm not the op it has helped me loads.

Ds is doing better this week - no big accidents and lots of poos in the right place! The things that we have been doing are:

*sitting on the loo for 10 minutes 3 times a day after meals. His teacher has finally started making sure he does it after lunch, which is great

*drinking loads more water

• taking 7.5ml lactulose every morning after breakfast. Previously I was a bit lax with this but now do it religiously
  
  *taking a childrens' probiotic tablet every day
  
  *very importantly not getting cross or hassling him about it - instead I tell him every day I am so proud of him for doing his best, and that nobody is cross with him if he soils. The more I think about it the more I see how important this is - just keep imagining how worried he must feel about not being able to control it, and this must lead to knots in the tummy, cramps, etc etc, and before you know it the physical symptoms are there again.
  
  Hope everyone elses dcs are feeling ok

[MelonCauli]

I had to post here because I have a ds (who happens to be dyspraxic and midly hypermoile) who has been chronically constipated since he was 2. He is now 8. We have been through many clinics and medical people but were really left to sort it our ourselves, taking the relevant advice from different professionals.

The most helpful person we saw was a psychologist who told us to sit him on the loo at the same time each day, 7 days a week. At the same time we took him off the movicol and put him back on senna and lactulose. We did that because we felt that we could control the 2 different aspects of the softness and the "pushing" in a more accurate way. We also decided that we would time everything so that he sat on the loo after supper each day, so we gave him the senna in the morning before school, and lactulose morning and evening.

We were very sceptical but it started to work after a few weeks. The psychologist told us that the bowels can be "trained" so that they get used to being opened at a particular time of day. SHe also told us that 90% of kids do not poo at school but they do it when they get home.

The other bit of advice that worked was to put his feet on a stool, do not let them hang or he is in the wrong position. Also give him an electronic game such as a leapster to play with. We found that if he takes his mind off it, the poo comes out!! TMI!!

We also switched from sennokot to ExLax (chocolate with senna in). We started on a whole square and are now down to a quarter each day. He also takes himself off to poo sometimes without being told. There is light at the end of the tunnel. Also don't decrease the amount of senna or lactulose too quickly. You have to reduce it very slowly as the bowel get used to firmer poos.

[accessorizequeen]

Thank you kindly eli, puffy and castles Don't feel I am coping admirably with it at all. Barely time to come on here much less do something bout all the very useful suggestions. I don't think I understand enough about the problem to know what's going on with ds1. And nobody has ever explained it to me. I think I need to read up a bit.
We had to up the movicol because he hadn't done a poo in several days.
Must must must start a poo diary at the very least tomorrow so I've got some idea of what we're dealing with and thus which of the various options (very few of which I've ever heard of!) might help. DS has actually been quite good about going to the toilet the last few days, but I suspect once he's back at school with dragon lady he'll go backwards again. He's been going on his own, sitting for longer if he thinks there's more poo and cleaning himself up without any complaints. If it starts again this week, I'll know it's her that's affecting his behaviour.

I'm really touched and thankful for the support on this thread, thank you all
And Eli, of course I would do the same for you and Castles, I miss you too (awww)

[Elibean]

AQ I wish I were near enough to pop over and lend a hand. I know you would for me, if you had 2 and I had 4 (iyswim).

Re ds, I had a long chat with a friend whose dd (nearly 5) had very similar problems...which were also heartbreaking, I remember it well. She was on Movicol for about two years, on and off, they tried loads of things but to cut long story short, in the end she was referred for play therapy at the local hospital. It was brilliant, a couple of hours once a week and helped her hugely. It took a few weeks/months, but she's fine now - really worth it, and my friend asked me (about six times!) to make sure I told you about it. I'm sure she'd be delighted to give you her email addy if you wanted to chat directly - just CAT me.

[puffylovett]

oh PS and I would be inclined to try Flax Oil rather than cod liver oil at this stage, as it also softens the stool..

[puffylovett]

the reason the epsom salts will work is because they are a natural source of magnesium, which really helps the bowel muscle to relax.

the supplements that jabberwocky has recommended will definitely help, although I will add to it that you could try some FOS powder which draws fluid into the colon and so softens the stool, and you could also try some of the Floradix liquid magnesium which will provide the fuel the colon muscle needs to relax and release the more solid poo.

I would half his dose of the movicol before trying these however, and I really would recommend seeing a Naturopath who specialises in childrens illnesses to get proper advice on an exclusion / rechallenge diet etc.

Hope that helps, and I really do sympathise with your situation, it sounds like you are coping admirably !

[castlesintheair]

Are you sure it's not IBS? Friend's DS with same probs as yours and similar sounding personality has been dx with it recently. They were told for years it was behavioural I wonder if it has become behavioural for your DS because of all the stress it is causing you and him, iyswim. Just another thought: another friend's DS with SPD (oh yes, I know them all!) has just stopped having to wear pull-ups at night aged 6.5 after 4 sessions (he has now completed a 6 month course) of OT. Arm stroking exercises apparently. Is it something to explore? Have current interest in this as DS dx with dyspraxia this week and we are now embarking on therapy.
Thinking of you AQ and miss you!

Sphil's epsom salts in the bath sound interesting. And simple.

[accessorizequeen]

that sounds so great, poshwellies - good for you and good for ds! I pray that we might get somewhere with . I think he's constipated again so upping the movicol which probably means explosions at school next week.

I'm finding parenting in general v.hard today, just the overwhelming responsibility of all these young children who completely depend on me. Sobbed on my bed for half an hour after putting the older boys to bed. DS1 had awful, awful, awful tantrum when he came back from school today. When it ended he just cried his heart on me and I cried with him. I so want to help him. And then the next day I literally don't have time to even think about any of it until he's gone to bed. Getting a meal on the table is a triumph. Though I haven't bought any more bananas and won't to see if it makes a difference. I just don't know if we can get on top of it right now, I was so lucky he threw the tantrum when someone was downstairs with the other 3 because it took over half an hour to calm him down.

I'm getting to the point I don't even want to speak to ds at all about poo, he must be so sick of the sound of us nagging him to sit on the toilet, drink more water, clean your bottom etc etc.

[poshwellies]

Our ds (who is 6) has had constipation issues for a number of years now (has been on movicol since 3).We have been through all that you have IG.The overflow which has meant ds has soiled himself at school,dh and I changing him up to 10 times in a day (countless washing and soaking of pants and showers and baths in the middle of the day),ds hiding or sitting down on the floors in shops so he wouldn't let himself poo.

It has been very very tiresome for us but for him too.I worried about the school soiling and him being bullied because he wasn't clean (he did come home once and say some of the boys had mentioned he smelled).I've had to take him off school for a week this year when the soiling was constant (he was heavily constipated at this stage).It was a battle of the wills at some stages-us begging him to go to the toliet and him refusing.

This has gone on for a long time BUT we have had a breakthrough.We are under the hospital and have a 'poo' nurse (We have been on and off for 3 years)We upped his daily movicol sachets so he's on a steady 3 a day (this seems to work for ds) and the main breakthrough is dramatically increasing his fluid intake (almost double his previous intake).This was hard at first as he refused to drink more but we have found that a sports bottle half filled with juice and his meds, will be drunk several times a day.He also is on a dairy free diet.

We have had no accidents in over 6 weeks and roughly 5 times a week, he goes for a normal poo.He actually asks to go now instead of being literally carried to the loo because he refused so much.He has a poo chart (from the hospital) and he likes to see it being filled with ticks (he also gets a tick for trying for a poo for 5 mins 3 times a day).

Ds is also sensitive-I have read http://www.hsperson.com/pages/test_child.htm this book and on the online guide, he ticks all the boxes.

If you had asked me 3 months ago if I even thought we'd be at this stage with him,I would of refused to believe it.He is a much happier boy now he has let himself be able to poo (and obviously the increase of fluids has worked)and us being constant too-I'll admit that sometimes we lapsed with the encouragement though sheer bloody exhaustion,I was sick of shit tbh most of the time.

BUT there is light at the end of the tunnel,believe me!.

[jabberwocky]

Yes, ds1 has that type of personality too. Interesting observation.

[GivePeasAChance]

It was incredibly incredibly hard to truly get rid of my anger, but when I had the lightbulb moment and understood how upset HE was about this, the tigress kicked in and I just wanted to protect him and make it better - and that generally does not involve feelings of anger.

For me, the children who behave like this do tend to have certain personality traits, but most of all probably have feelings that they have no control over when they do it - after all, it is their body and their poo and they should be able to control what they do with it (and I suspect that is what they are doing when they hold it in, eventually leading to soiling). So they also have probably been subject to a level of 'helicopter parenting' ( I can say that because I was one !) which leaves them in a place where the only way they can have some control (because mummy is always saying "do you need a poo? I will give you a star if you do a poo" etc.etc. etc - you all know the story !) is by holding it in.

But then in the meantime, the physical problems do manifest themselves and some help there is also required !

God, it's hard.

[poshwellies]

Yes, my ds (age 6) is just like yours IG.

We have had lots and lots of 'poo' problems too.

Have to go on the school run now but I will post later..

Stay strong!

[IrritableGrizzly]

Well, since I posted a few days ago ds1 seems to have had a relapse, and has had 2 days of what seems like constant accidents, including 3 at school. So much of what's been posted here I feel like I could have written myself. My ds also doesn't tell me if he's soiled, the teacher emailed me and told me he wouldn't admit it until she told him she could smell it. When he got off the bus the smell was so strong, it was awful; there's no way the other children hadn't noticed.

That was a really good post GivePeasAChance, and it made me feel guilty because I know that you're right about letting go of the anger but I find it so hard, it's so frustrating, when you just don't understand what's causing this, and when they don't seem to want to help themselves. You've really inspired me to just stop with the anger and disappointment, and instead support ds unconditionally in getting better.

I've been thinking about the behavioural/psychological aspect of this problem, and started wondering if there's any link between the child's personality and their predisposition to this condition. My ds is sensitive, (sometimes overly so), a bit of a worrier, very private, quite shy - definitely not a straightforward personality. I'm sure he feels so much more than he lets on, but he doesn't like to share how he's feeling very often. Does this sound like anyone else's dcs?

[jabberwocky]

It seems to be a really common response for them to not tell anyone when they've had an accident. Ds1 was exactly the same. I even tried to talk to him about the fact that other kids might tease him but he didn't seem fazed about it. One of my friends who is a therapist said that some children seem to enjoy the warm, soft sensation

[Hangingbellyofbabylon]

ha, ha! no don't worry. I just remember that bit from school days biology for some reason. Dh normally home and 6pm and at 6.02pm I heard 'mum, can you wipe my bottom'? I was willing dh to walk through the door but he managed to turn up a few minutes later just as I had finished dealing with it and was gagging in the sick .