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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.

sunshineandshowers13 Sat 31-Mar-12 23:20:27

Oh toadsporn you havent failed your dd sad. Those of us on this thread know just how bloody difficult this sodding regime is. My dd would drink it til she was actually throwing it up sad and then i would have to steel myself to coax her into just a little bit more honeypie, take your medicine like a good girl.
For fuck sake my poor baby girl what am i doing to you.

We are consistantly told that our children will grow out of it and i have to hope that in most cases this is what will happen.

I have to believe that.

Or i just dont know what i would do.

ToadsPorn Sat 31-Mar-12 23:41:15

My daughter didn't do a poo at all for a whole year aged 16. She just had overflow every 10-14 days, for 4-5 days at a time. She spent a week having some vile substance called kleenprep via a nasal tube aged 15, which was supposed to clear the blockage. It didn't. She then had her birthday, and so the paediatric consultant was no longer interested, we had to wait for referral to the adult consultant. In the meantime, she just became more and more impacted. No one seemed to understand what she was suffering sad

ellenbrody Sun 01-Apr-12 10:31:40

ToadsPorn - Your poor poor DD (and you). I'm so sorry for everything she is going through and my heart really feels for you <<hug>>.

Tweedledumb Sun 01-Apr-12 14:29:29

Me too, ToadsPorn - I'm so sorry she's suffered so much, and that you've had to watch and support while all that goes on. Your post, and Sunshine's, made me cry for you both, and all that your daughters and you have had to put up with. A big unMN hug from me too smile

used2bthin Mon 02-Apr-12 08:37:27

Just been reading this thread for some tips-DD, 5 and a half has had bad constipation since being put on reflux meds age 1 (she was put on them because the steroids she takes for a genetic problem caused stomach erosion, bit of a cycle).

Anyway we saw the constipation nurses for a couple of years but then got discharged after accidentally missing an appointment (we have a lot of appointments) and I haven't asked to be re referred as felt they were repeating the same advice each time. We are also lucky that movicol works for dd and mostly if she has it every other day it keeps her well but it is interesting to hear of children seeming unwell due to this-dd sometimes mysteriously seems very ill, she recently had a funny turn at school (possibke epilepsy related) and has been on and off unwell this year but it works both ways for her-the minute she is unwell she dehydrates and gets constipated and the normal dose is no longer enough, we'll get a week or so of dreadful behaviour, wetting herself etc then huge poos and bleeding, it is awful.

I give her weetabix every day! I tried the oat ones when trying to sort out her psoriasis and she hated them, I thought weetabix was good, oh dear will have to find a different cereal.She also eats tons of pasta-wonder if gluten/wheat free would be better or is it best avoided anyway?

OP lots of sympathy it is really awful when it is bad and it sounds like you have had a hard time of it.

3littlefrogs Mon 02-Apr-12 11:30:37

Just to clarify:

High roughage is bad for children who have an overstretched colon due to impaction and overflow over a long period.

If constipation is not due to chronic witholding, impaction and overflow, a small amount of roughage should be fine, as long as it is given with plenty of fluids and cooked fruit and vegetables.

If a child who suffers from chronic constipation (or any sick person really)becomes ill/feverish/not eating/drinking, giving a high roughage diet is counterproductive because they end up with a hard blockage. So if the child is ill, you need to adapt the diet to include the soft cooked fruit and veg plus lots of wet foods.

This is why we used to give sick people an "invalid diet" - small portions of easily digested food - typically "soup and sweet", or poached fish, stewed fruit etc. All this seems to have been forgotton now. Nobody knows how to nurse poorly people at home any more.

miarosemum Mon 02-Apr-12 19:27:17

i have had same problem with 5 year old dd. worst cycle of impaction was last summer, was referred to hospital and was admitted as inpatient for deimpaction with massive doses of movicol and an enema. x-ray showed complete blockage all the way from her rectum to large intestine. only after complete disimpaction and weaning her graudally off the movicol did she start reception in september just in time with everything back to normal (normal for us being opening bowels with no pain every other day). I suggest tweedledum that she maybe was never completely cleared out, and that the bowel movements need to be coming out like yellow water (sorry if tmi) to be completely cleared out before you start weaning her off the movicol gradually.

used2bthin Tue 03-Apr-12 07:19:22

3littlefrogs, thanks am not sure if the constipation is due to impaction etc, I think the chronic problem probably is, she certainly tends to have a cycle now of hard lumpy huge poos that would be painful to pass for even an adult and then a few days after that of normal ones.

Because of her consdition I have never felt able to give her a proper clear out with movicol in case it dehydrated her so maybe this didn't help. I think I will try cutting down the weetabix and pasta, she eats such a lot of it,its not that unusual for her to have 3 weetabixs. The sick diet makes sense, I very rarely have her home when she has been properly ill but will bear it in mind for the next milder illness or when we get home and she is recovering.

Reading this thread though I am grateful that DD has responded to movicol enough to help as much as it has.

Tweedledumb Tue 03-Apr-12 08:32:35

Miarosemum, I know, it does sound as if she's never disimpacted properly, but sadly she really has.

We've had xrays post disimpaction to confirm, and are achieving those delightful clear water poos for three days each disimpaction before dropping dose gradually. Never tmi for me where poos are concerned, sadly.

Can't believe my most responded to thread ever is all about poo; sob! Thanks so much for all your responses, though. It's really interesting to hear the approaches taken with other kids....

miarosemum Tue 03-Apr-12 08:48:57

because it is such a common problem sadly and you feel so alone in treating it, untill you realise exactly how many children do suffer from it. I have also tried (dare i say it!) homeopathy but as an additional therapy not to replace conventional therapy. this greatly helped dd in her first bout of constipation and she had a massive clearout and helped with her tummy ache. I have also concluded that I have to steer clear as much as possible from antibiotics as she always reacts when she has had them.

Tweedledumb Tue 03-Apr-12 09:49:00

Miarosemum, I know, it does sound as if she's never disimpacted properly, but sadly she really has.

We've had xrays post disimpaction to confirm, and are achieving those delightful clear water poos for three days each disimpaction before dropping dose gradually. Never tmi for me where poos are concerned, sadly.

Can't believe my most responded to thread ever is all about poo; sob! Thanks so much for all your responses, though. It's really interesting to hear the approaches taken with other kids....

Tweedledumb Tue 03-Apr-12 10:30:56

Bah, silly phone! That's interesting about homeopathy: I've been wondering about some form of complimentary therapy. Admittedly, it would take a lot to get me to try homeopathy, but it's not like conventional medicine is wowing me with its efficacy right now!

sunshineandshowers13 Tue 03-Apr-12 13:02:14

i'm sittin here laughing at us all talking about poo so easily!! I sometimes forget when i'm with my rl friends and they do kinda go uurrgh tmi blush

Have to admit we have a poo dance and one of the happiest days of my life was when dd2 did a poo without any laxatives only once, only one day and never happened since but focus on the positives grin
I also think that its important for the kids to talk about it too even if its only to us parents, its still seen as a bit of a yucky taboo subjects but its one of the few things that everyone does.

sunshineandshowers13 Tue 03-Apr-12 13:07:14

ooh tweedeldumb, meant to mention about nappies. I think i read further up thread (sorry if i'm wrong) that your dd wears nappies? When my dd went into nursery we found that she was really embarssed about the nappy thing and even pullups had the wrong connotations for her IYKWIM. In the end i bought dozens of pairs of cheap pants and she wore them. Obviously when we were disimpacting it was a nightmare and tbh honest threw out most of them immediately. But on a day to basis i was able to rinse, soak and wash them to a certain extent (napisan is ace as it kills the bacteria too) It did mean that we had lots of changes of leggings/tights/jeans etc but it also meant that dd was able to feel a bit more grownup and the same as her friends.
Sorry if got this wrong - dont have to time tor ead through the posts as at work blush.

ellenbrody Tue 03-Apr-12 13:31:23

Sunshine, you are right about it being taboo. We are really working on being more open about it in our family. I really did not know my daughter was constipated until it had gone too far. Luckily she has a wicked sense of humour and we try and see the funny ( hard!) rather than the gross. I keep thinking if I'd known a year ago, we could have avoided all this carp ( literally!!).

I think being open and honest even if it feels a bit odd at first us the way to go.

I also second the 'lots and lots of cheap pants' route, Napisan bucket in the bath, chuck clothes in and wash all at end of the day. My DD did wear a pull up at night when it was really bad though.

Tweedledumb Tue 03-Apr-12 14:03:35

She's only in nappies when we're disimpacting, as it's just too difficult for her then. Otherwise, she's in knickers. She potty trained no problem at all, so was used to wearing knickers for quite a long time until this started.

Interestingly, I think it's a relief for her to wear nappies (though increasingly she's conscious that it's a more babyish thing to be doing). I think nappies take away the shame of "accidents" for her - that's sort of what she's said.

Unfortunately, DD doesn't want to be open about the soiling - she hates talking about it now sad. We do however do a good dance and high five if she has a successful poo, and she will tout it round the house to show us (all time classic: "Look, mummy, it's like a number 6...[swivels potty round]...oh, or a number 9"!).

Well, ladies - you can hang out the bloody flags on my behalf. I have acquired a consultant appointment next week, rather than in over a month's time. Managed to speak to the 'right' person (in fact, a secretary in a different department hmm), who sorted it out in two minutes, literally. It's just always such a battle....

Tweedledumb Tue 03-Apr-12 14:05:10

Oh, PS - my top tip for those less advanced down this route than I am, esp for little girls really, is always to layer clothes, so that their trousers/leggings/tights are under a dress or tunic, so that any soiling isn't obvious immediately. I dunno - DD wouldn't realise, but I feel it's a little something I can do for her.

pooandmorepoo Tue 03-Apr-12 15:07:10

OP - My DS has had similar situation and was on 4 sachets of movicol a day for a year but bowel has not recovered its size at all but impaction was misdiagnosed for a long time. He has had colonic transfer marker xray and now general anasthetic to put camera in both ends and do biopsies.

In our case they took it seriously when he stopped growing, before that he was just very slow growing, now he is 7 and measures just 1.02m tall and is skinny too. Also low iron levels have not improved after a year of supplements which suggests he is not absorbing properly as apparently stocks should rebuild within 6 months. Doubt there would have been these investigations if we were just reporting the soiling and stomach pains.

sunshineandshowers13 Tue 03-Apr-12 17:13:57

Yesyes to layering! Tights under jeans with long top/cardy = camoflage (sp) grin and i used to have a "nice" bag for spare clothes etc with pink nappy bags for the dirty stuff when out and about. Anything to make it a little less traumatic for her.
i heartily recommend the poo dance Ellenbrody - its liberating and silly! How old is your dd? has she tried the Eric website? We did and she has benefited slightly from the responses on the forum bit for kids, its helped a little to see shes not the only one. However i'm not sure it would have helped her when she was younger. Not convinced about the rest of the website tbh - not overly impressed and didnt feel it was relevant to our situation.
And tweedledumb good for you getting appt!!

sunshineandshowers13 Tue 03-Apr-12 17:15:30

dont mean to be demoralising but we were "clear" for about 3 years and still her bowel did not return to size sad. its a very very long process - but each child is different

ellenbrody Tue 03-Apr-12 18:07:18

3 years!! Oh dear. My dd is nearly 8 and has only just been diagnosed after a year of stomach pains and soiling since Christmas. She is old enough to be mortified by it all and has missed a lot of school.
We are doing our first disimpaction but it's taking a lot longer than expected. 2 gps and a consultant paediatric gastroenterologist diagnosed ibs and gave her immodium!

ellenbrody Tue 03-Apr-12 18:22:50

Oh forgot to say, great news on the appt Tweedledumb, keep us posted!

fivegomadindorset Tue 03-Apr-12 18:25:35

DD has been on Senakot for over 2 years now, she is six, still don't feel we are getting anywhere, refuses to poo on the loo, and still in nappies at night.

3littlefrogs Tue 03-Apr-12 18:45:34

Gosh fivegomadindorset - I am really surprised that your dd is on senokot and nothing else. It really isn't the best thing because it works by really irritating the lining of the gut. It is usually only used short term, in conjunction with lactulose and docusate. Then the amount of docusate and senna is reduced while the right dose of lactulose plus diet is found.

Senna can cause horrible colic and pain too.

fivegomadindorset Tue 03-Apr-12 18:48:28

Shw was on LActulose but came off it about 6 months ago, the dosage has been upped from 5ml to 10 ml recently, she never clears hersefl out and she is in pain on some days. Bugger.

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