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?

[jabberwocky]

Oh, and tethered cord syndrome is something to consider.

[jabberwocky]

eeks, killed the thread

[accessorizequeen]

course you haven't jabber, had time to read your post but no time to reply sorry!
thanks again for your thoughts on this, I've asked for a referral back to gastro paed to try and get somewhere. I have asked about diet before, but was assured by several people that his diet was perfect and not to take out dairy or even bananas which I thought were bad. Hmmm.Currently working on his water intake and getting the dose right, shall tackle sitting next I think. I'm going to keep a daily diary, I might add food to that as well to see if that's affecting things.

[DesperateHousewifeToo]

Sounds as though you have a good plan.

I stopped giving bananas to ds for snack and now he only has them occasionally. I figured they were not key to his health so he would not miss them

Unfortunately, all the fruit in his lunch box has come home uneaten this tyerm so far.

He's had house points for a healthy lunch- shame they didn't wait to see what he ate first

[sphil]

We had a similar, though admittedly milder, problem with DS1 from the age of two until very recently (he's nearly 8). GP prescribed lactulose, but it had very little effect. We started putting Epsom Salts in the bath - not with him in mind at all but for his brother, who has autism (there's some evidence that Epsom Salts help with the symptoms). DS1 usually shares a bath with him - and after about two weeks has started going for a poo every day (from once or twice a week). It's come as a complete surprise, to him and to us. But would obviously check with dr if he is on other medication.

[Celery]

Jabberwocky, your advice is really interesting, thank you. I wonder if it is a coincidence that dd was mildly intolerant to cows milk when she was a baby, causing eczema. We used goats milk then, and it was wonderful stuff. She does now eat at lot of cows milk products and drinks a lot of milk. Also the information you give about probiotics. I will also look into the epsom salts. Thanks everyone.

[accessorizequeen]

Yes, me too Keep posting, celery - we'll support each other through this. Rewarding ds for drinking has really helped already - well in that he's drinking loads more 6 cups a day.

Is there any actual evidence about the bananas before I (sigh) get rid of them again? Gonna be hard, that one as both ds's love them and so do the dt's!

[jabberwocky]

celery, you're very welcome. Ds1 was sensitive to cow's milk early on as well so I guess it shouldn't surprise me that he still is.

I am going to give the epsom salts a go as well. Can't hurt

[DesperateHousewifeToo]

Re: bananas.

Do a google of ''bananas constipation''. There are quite a few results. They give different views of whether bananas help or not.

One site mentions that ripe bananas are ok and that it is the greener ones that are binding.

As far as I know (and from personal experience), banans, chocolate and eggs (ds never had eggs as allergic) are binding.

When I stopped ds having banans daily, it did help but there obviously could have been other factors involved.

I'd just give it a go cutting them out/ cutting down on them and see if it helps.

Well done on improving his water intake. Has there been any improvement in actual bowel movements?

I also used to give ds a treat for doing a poo on the loo (whilst ignoring the ones in the pants).

Epsom salts? Will look into it

[Hangingbellyofbabylon]

we're with you on this one - have a 4 year old dd with chronic constipation. The turning point for us has been adding senakot to the equation. Doc explained that movicol makes poo runny but senakot actually forces the body to let the poo out. We're now doing half a sachet of movicol and 7.5ml of senna daily and most days dd is doing one large poo after dinner. However, the movicol makes her sensitve to any dietry changes so if she happens to have a bowl of strawberries the same day she'll have really liquid poo and accidents the next. . It is a constant battle, it rules our lives and we feel we can never just leave the house as we have to have the full clean up kit. We are working on a little reward chart,only 10 stars worth (a star for each poo in toilet) and when she reaches that she gets to choose a magazine from the shops. It's not ideal and it's not a solution, it feels like there is no solution and no end at the moment. I'm sorry for all of the mums and children on this thread, chronic constipation is something that sounds really trivial until you actually live with it.

[GivePeasAChance]

I think you are getting good advice here. However I do think there are more things you can consider for the psychological aspect - it is almost definitely a factor and by addressing it, you will aid recovery.

DS1 is nearly 7 now but until 1 year ago we had problems too. When we sat down to talk with him about it he said to me "this is the hardest thing in my life". That really broke my heart and also made me turn a corner to not see this as something to be cross with him about (even holding in the anger, I am POSITIVE they know you are angry anyhow - kids are so so intuitive).

So instead it became something to support him with - let him take the lead and give him the environment to be able to really tell you his feelings about which parts he finds difficult and give clues to what made him anxious.

Because I was actually able to not feel angry AT ALL when it happened (previously I would have been angry but tried to hide it) then almost overnight the tension lifted. I felt so bad that he felt so bad about it.

I know you have said that he doesn't seem to care and DS was exactly the same - I thought he didn't care. But I would place bets that he does care and it is upsetting for him.

So ours was solved with a combination of psychological support and half a square of senna chocolate. Once the environment was created to let him lead the process and I genuinely was not angry, things got so much better. In fact it has been a whole year with not ONE soiling incident.

It was very difficult to change my mindset on this and understand this from his point of view, but the behavioural aspect cannot be ignored. It is hard hard work, to be honest with yourself about why this is continuing, but so very worth it. I completely sympathise with you, it is a nightmare and hope you can help him be able to sort this.

[DesperateHousewifeToo]

Great post, peas.

I'm going to look into senna chocolate too

Ds is due to start a new school in September. I thought really hard about whether to put anything on the medical form. In the end, I did. I decided it was best they knew in case we had a flare up whilst he was there.

[Hangingbellyofbabylon]

good point peas, it is really really tough not to get cross at some point, especially those days when you're up to your eyes in poo. It sounds like you've really turned a corner with your ds, well done.

[accessorizequeen]

Senna chocolate sounds v.interesting. Absolutely see your point, peas. I got so angry for a long time with ds and I'm fairly sure my attitude caused him to withold and caused some of the problem in the first place. DP and I tend to vary about it - I'm at home all day so I've had to come to terms with it and get rid of my resentment about it so I'm not radiating anger etc. I don't anymore (well don't think so) but I do get cross when he doesn't tell me that he's had an accident. He didn't tell school today and was only picked up after lunch when he started to smell . Really don't know how to tackle it. Have had endless 'relaxed' conversations with him about, he promises to tell us/school & then utterly fails to. I think it's partly because we have got really confused in recent months about whether it's accidents or whether he's just not bothering. And no-one seems able to tell us! DP goes off on rants at him every now and again (this is when confiscating toys etc came in) but often when I'm not around to stop him. Not trying to make dp look like an ogre, but he comes home at 6 after working his a(*e off and the first thing he's confronted with is a bottom to be cleaned and an attitude to go with it. I'll talk to him about it some more this weekend, but I think he's fed up of talking about poo at the moment! It does dominate your life really as all of you know!
Babylon, bit confused by your post as I was told Movicol took the place of both lactulose & sennoket i.e. it softens and pushes out?
Must go and wash some more trousers & pants for school. Sigh.

[Hangingbellyofbabylon]

that's interesting, not sure really but the last paed we saw said senna was needed to initiate peristalsis. I guess what matters is that this combo seems to be working for dd at the moment, getting the right balance for your child is so complicated.

[accessorizequeen]

Absolutely, we haven't got the balance right yet! What is peristalsis? (ignorant emoticon)...

[Hangingbellyofbabylon]

peristalsis is the movement of the gut and bowel to push the food/poo along. Hang in there, I know exactly what you mean about when your dp comes home and he is faced with a pooey bottom; I have really bad morning sickness at the moment so the second dh walks through the door he's on poo duty.

[accessorizequeen]

I should have known that, shouldn't I? I really have trouble following the biology stuff. Have either been pg or with 1/2 newborns when talking to drs about it! Erggh to poo when pg, the pits!

[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 .

[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

[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?

[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!

[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.

[jabberwocky]

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

[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!.