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Recurring constipation/faecal loading - please help!

(110 Posts)
Tweedledumb Fri 30-Mar-12 18:57:37

I've namechanged for this as it almost certainly outs me in RL to those who know me.

Subject says it all. DD (4) has had rather atypical constipation for over 18 months now. She started going less and less regularly, but I didn't really fret over it because she was never in any pain pooing, and they didn't seem particularly hard (and there was never any withholding). She was probably going every 3 to 4 days.

She gradually seemed really unwell, with no diagnosis, and then eventually started soiling about 4 months after first seeming ill, at which point I finally twigged what the problem was - she was massively faecally loaded.

We disimpacted with movicol, got a referral from the GP to the nurse-led constipation team within the local paed gastro team, and have been under them ever since (about 9 months).

However - it's been 9 months under them, and nothing works. We've tried maintenance doses of between 1/2 and 4 movicol (obv not from day to the next - this is at separate times!), and also no stimulant laxative up to 5 mls of sodium picosulphate.

The pattern is always exactly the same - she's well and no soiling for 2 to 3 weeks after disimpaction, then starts soiling again and becomes unwell (with no hard poos/days without poo/straining at all), then we have to disimpact all over again.

We've been doing this for 9 months, and have only seen a consultant once.

So where do we go from here? She's so distressed and embarrassed by it, and we as a family can't take much more of her either being ill and loaded (and soiling) or being ill and disimpacted (and in nappies) - it's no way for her to live if we can help it.

If anyone out there has any similar experience or professional expertise on what should come next, please, please let me know - I'm so sick of pushing for further investigation or intervention and being fobbed off sad.

Springforward Fri 30-Mar-12 19:52:52

Nothing useful to offer but I'll watch this thread with interest - my 3yo DS has a similar issue (maintenance doses of lactulose etc.) and, unhelpfully, is currently going through a phase of rejecting fruit and veg....

I understood that the trick was to keep the laxative going for as long as it takes to establish a reasonably regular pattern again, so the bowel has a chance to shrink back to normal size and regain tone, but we're not having a huge amount of success with it either. I am going back to GP to ask to be referred on again.

Tweedledumb Fri 30-Mar-12 21:16:58

Oh, good luck with that, Springforward - I'm really sorry to hear your DS is suffering too.

Aye re maintenance dose - the problem is that we just don't seem to have found one!

For what it's worth, it might be worth pushing for Movicol rather than Lactulose (Movicol's more expensive, I've been told, so I think sometimes GPs in particular try not to prescribe in the first instance). My (non-professional) understanding is that Movicol works in a slightly different way, and can be more effective (though obviously makes bugger all difference for us grin).

DorisIsWaiting Fri 30-Mar-12 21:34:25

Really sorry to hear about your dd.

we had similar issues with soiling (wee and poo) with dd1 at about the same age as your dd. We have been through all sorrts lactuloase then movicol then school refered to continence team (GP wasn't bothered despite dd's distress).

DD is now on a dairy free / soya free diet ( she was suffereing massively with abdo pains aswell) and has 4 sachets of movicol a day. We are now being refered on to the paeds but I don't envisage much change ....

DorisIsWaiting Fri 30-Mar-12 21:35:30

Forgot to say dd's now 6 nearly 7 I am beginning to wonder if movicol will now be a permenant feature in her life sad

Springforward Fri 30-Mar-12 21:40:28

Thanks for the tip - tempted to speak to pharmacist first so i know what to say to gp!!!

Sometimes I am sure DS is trying not to poo because it's scary, then soils. We try hard to make the big poo as unscary as we can (potty in front of telly etc) but i do kind of feel that if we could crack that we might get somewhere?

WipsGlitter Fri 30-Mar-12 21:40:29

I feel your pain, DS is on Movicol. On a different track was there anything that might have triggered the withholding? Dud shecstart school or pre-school? Did she not like the toilets at school?

3littlefrogs Fri 30-Mar-12 21:51:23

You need to be consistant with the treatment dose of everything for at least as long as the problem has exisited. No stopping and starting, and no reducing the doses. Each time you change the regimen you end up going right back to the beginning again. This should have been explained to you right at the start of treatment.

When dd had this she had 3 different kinds of medication: Lactulose, senna and docusate. Large doses of everything daily. After 6 months I thought we had sorted it, but as soon as I reduced everything we were right back to square one. In the end it took about 2 years to get a normal pattern of bowel function in place.

In the beginning we had to use glycerine suppositories every 2 days because she was so frightened of "going", because of the pain.

I think that in recent years, movicol is used more frequently, but it wasn't an option back then.

HTH

sunshineandshowers13 Fri 30-Mar-12 21:51:42

ok. I'm not sure our experience will help but. . .
you're not alone. My dd2 who is now 8 has never never pooed normally. Ever. A cycle of constipation - disimpaction- soiling- over and over since she was a baby. Our disimpaction regime at one point consisted of 12 sachets of movicol daily for 3 months, you can imagine how that went! We were on 30ml of senna daily, 15ml sodium picosulphatealso used enemas and suppositories. We were dairy free for 3 years and also soya free- all to no avail - she still didnt poo. She missed nursery then school, playdates, parties, sleepovers, day trips, swimming the list is endless and i'm sure very similar to yours.

I felt we were constantly being fobbed off with "childhood constipation" and not getting anywhere. Meanwhile my beautiful daughter was getting thinner and more exhausted by the day, not to mention the embarassment and shame she felt having soiling accidents at school and in front of her friends.

She came to me one morning saying she would be better off dead as then the rest of us (me,dh,dd1,ds) would be able to do whatever we liked whenever we liked and not have to work things around her all the time. So after i managed not to break down in front of her and get her to school, i went to work (GP receptionist) and broke down in front of GP.

Fast forward 1 yr - we are now doing daily rectal washouts. I know. Colonic irrigation without the posh bathrobes grin She now admits she no longer hates them, only strongly dislikes them - this is a HUGE step forward for her. BUT no more accidents or soilings and she is *well*. I wont pretend its not horrendous for us every night but we can deal with it in the privacy of our own bathroom and its something she has control over.

wimini Fri 30-Mar-12 21:54:10

I also feel your pain. I have two children on movicol - fortunately the maintenance dose of 1 sachet a day works wonders for the eldest and the little one (18m) is making a bit of progress on it but we're having ups and downs. We have kept the eldest child's dosage steady for more than 2 years now, and when we reduce it we're going to do it very, very, very, very slowly.

sunshineandshowers13 Fri 30-Mar-12 21:55:08

like 3littlefrogs says when we talk about keep the dose going - i mean for aggeeesss! Triple how long you think you need and then leave it a few weeks longer grin We were told it would take as long again for the colon and rectum to "shrink" again as it did for it to stretch in the first place.

Movicol apparently passes through your system with the water its mixed in, lactulose absorbes water from the rest of your body to soften the poo. You need to drink lots when on movicol - not just the movicol itself.

3littlefrogs Fri 30-Mar-12 22:00:49

Oh - and don't give things like weetabix, bran, or high roughage food. It just builds up in the stretched bowel and causes an enormous hard mass that blockes everything up. This is not ordinary constipation so the usual advice doesn't apply.

Things that are good are:

Stewed apple
boiled mashed carrots and swede
apple juice
tiny amounts of bananas
small quantities of broccoli.
Vegetable soups, small amounts of lentils, all with loads of liquids
plenty of wet foods like custard, yogurt,jelly etc.

Springforward Fri 30-Mar-12 22:06:54

3littlefrogs, I didn't know that! Will put that into practice TOMORROW, thank you! DS loves weetabix....

sunshineandshowers13 Fri 30-Mar-12 22:11:37

hope i havent hijacked blush
should have also said that you need to make sure next time you see the consultant and not the registrar/nurse etc. Be polite but insistant. I think sometimes they underestimate the emotional impact of soiling etc on the child and the family. Make it clear how much this affects your entire family. Write it down and take it with you if needbe. I was unwilling to discuss everything in front of my dd2 as she was so embarrassed and felt it was her fault, so took my mum along and she waited with dd in the waiting room for some of the consultation. Felt i could then speak freely about just how bloody awful it actually was.

Do you live in England where you have the choice of hospitals and consultants? We are in rural scotland so had no choice where we went or who we saw.
Have you tried the eric website? www.eric.org.uk
We found that movicol just doesnt work for our daughter and the consultant did say he hadnt met any other child like her - i know there are others out there. Movicol is not always the answer.

Kione Fri 30-Mar-12 22:14:54

My friend has a son with this problem, he is 4, and after giving him suppositories, laxatives, and nothing working, someone told her to try fig juice. She said it worked, its very difficult to get holf of and she buys it on the internet (but we live in a very small place).

Its worth a try as it is tasty (he likes it) and it won't harm her. I know other adults that have that problem that eat figs, so it must be something on them.

Tweedledumb Sat 31-Mar-12 07:38:26

Oh my goodness - thank you all so much for posting - I didn't expect to get so many replies. It's lovely to know that we're not alone (I know that in theory, but in practice I never meet anyone else whose child has this level of constipation and soiling).

On the dose change comments, I know we've to-ed and fro-ed, but that's been under the aegis of the nurses and consultant. The upping of dose has been because she's reimpacted on a smaller dose, and the lowering of dose has then been because her soiling was attributed to being on too high a dose of movicol (but transpires that she was actually just impacted and soiling again). I quite agree that we should stick to a dose, but we haven't found one that stops her getting impacted.

I should have mentioned, but was worried because my OP was already so long blush - she's extremely gluten intolerant (though not coeliac), so was already off gluten before this started. And she was off dairy and soya when this started, but has since grown out of that intolerance and so is back on them (although we're actually stopping dairy and soya again just to rule them out definitively as the cause). I actually wonder whether the diarrhea from the gluten might have masked this issue when she was little, as it the constipation started a few months after she'd come off the gluten.

Sunshine, thank you so much for your posts - you haven't hijacked in the slightest! I'm so sorry to hear of your daughter's distress; that's exactly the direction I can see mine moving in at the moment. She told me yesterday that she wants me to work at her nursery so that she wouldn't need her accidents and nappies changing by the helpers rather than me sad. And she had her first bitchy comments from a 'friend' the other day (meaning to be bitchy, not just curious - quite sad from a 4 year old).

I need to post and run as we're off on a day trip today, with approx 1,000 nappies (!), but will post more this evening. Thanks so, so much again - perhaps we can provide a bit of mutual support through this thread....

Mummyinggnome Sat 31-Mar-12 07:46:18

Hi,
Ii know someone with this problem and found the only way that didn't mean taking high doses of laxative like substances over a sustained period was to eat no bulk forming food, ie pasta, bread, etc and a largely vegan diet. Basically no animal protein. A bit drastic, but the long term usage of laxatives can't be a good thing.
In her case, after years of trying to sort it out, she is now completely 'normal'.
Good luck.

ellenbrody Sat 31-Mar-12 09:03:47

Mummyinggnome - as I understand it, Movicol is one of the few laxatives that you can be on long term. OP - I feel your pain. The last year of my nearly 8 yr old DD's life has been pretty much spoiled by this too (not to mention missing school, work etc). A real lack of knowledge from the GP resulting in prescribing immodium ( worst thing ever!). She's on 10 sachets a day ATM & 10ml sodium Picosulphate, we were told to reduce this VERY slowly (over months, not weeks) with the help of the nurse) and it may take up to 2 years to get better. Its a real long process.
3 lttlefrogs- I didn't know that about the diet! Advice is so patchy isn't it? It seems I probably have not helped on the diet front.
Drinking lots seems key. My DD has a drink chart where she adds a star for each cup, when she gets to 8 she gets a sweet or something,

sunshineandshowers13 Sat 31-Mar-12 09:42:53

Ellenbrody - thats my understanding of movicol as well. There is just a massive lack of information for us and i think what will work for one child may not necesarily work for another child.

Tweedledumb Sat 31-Mar-12 20:04:30

Back again!

Sunshine - yes, I'm trying my hardest to emphasise every time I speak to the nurse just how extremely it's affecting DD and the rest of the family. We get the usual platitudes, but no one actually seems to do anything to move it all along. It's like Kafka with poo!

We also try to do a two adult approach to appointments, so that things can be discussed in more depth without upsetting DD (well, what appointments she has - most of this is done over the phone, including diagnosing impaction now!).

I've tried talking to the folks at ERIC, but actually they haven't been that helpful (I suspect because it's not a very standard case, as I've heard very good things about them from our health visitor etc).

I'm desperately pushing to see the consultant again, but it looks as if the nurse just didn't actually make the referral she said she would for a few weeks, which now means we can't see a consultant till May (having disimpacted in February, and now disimpacting again all this week!!). And meanwhile I'm being told to basically carry on with a dose that doesn't bloody work once I've disimpacted her, so I'll probably have to disimpact her again before we see him angry

Those of you whose children are on much, much higher maintenance doses - can I ask how you reached those? Did you start on the normal 1 to 2 movicol, get reimpactions and so get told by your healthcare professionals to up them? I pushed to try 4 movicol (which didn't sustain things, admittedly), but was told at the time that it was too high...

And also, has anyone's child actually been offered further investigations (like, I don't know - maybe manometry, gut transit studies, etc)? Sunshine, in particular - given that your DD's had this from birth, have they not biopsied for Hirshprungs?

So sick of this. The sense of loss of the happy, confident, well child you once had is just awful sad. I know it could be SO much worse, but I feel I can air that emotion on this thread. Thanks for at least reminding me that we're not alone....

Tweedledumb Sat 31-Mar-12 20:06:15

PS - Ellenbrody, so sorry for your DD and you. I'm so shocked by the immodium prescription - i assume that's labelling soiling as diarrhea?! The mind boggles....

Tweedledumb Sat 31-Mar-12 20:07:59

Sorry, PPS (a glass of wine down!) - I think the lack of information, and the fact that different things work for different children, are both key.

I keep having the same stuff trotted out to me by the nurses when it's obviously not making a blind bit of difference to DD - it's as if they don't care that she doesn't fit within that framework, they just follow the same route with everyone.

sunshineandshowers13 Sat 31-Mar-12 22:54:04

tweedledum - i'll pm you.smile

ToadsPorn Sat 31-Mar-12 23:12:05

Please please keep going with movicol, insist on seeing consultant etc. my daughter has had this problem since she was 2. We have thought that we'd cracked it so many times, and stopped medication. She's had senna, lactulose, picosulphate, movicol, everything. She's hated all of them, and its been such a battle. She's now 17, and still has a problem. She's been hospitalised 3 times, had nasal drips and digital removal of impaction under general anaesthetic. She missed gcse exams, and has now dropped out of college because she's missed so much school.
I feel so guilty for failing her and not forcing her to continue with movicol, but 8 to 12 sachets a day requires real commitment.
Next stage is removal of part of her bowel. She 's had a gut transit study, and her system is just incredibly slow at processing waste, so build ups are inevitable

sunshineandshowers13 Sat 31-Mar-12 23:14:39

Ooh should have said that it was consultant who sent the movicol dosage. Start at 2 sachets twice a day i think then work up to 4 sachets 3 times a day.

But then movicol doesnt seem to work for us confused

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