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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.

Plopsicle Thu 21-Feb-13 16:39:45

Can i ask how you would know if your child was impacted?

Ds is 9 and only poos once a week, the poos are really big though. No issues with overflow/soiling.

Eachpeachpearwherestheplum Tue 19-Feb-13 22:39:58

Can I bump this thread? Really hoping all you lovely mums have good news to now share, months on?
Really struggling with DS and years of issues. Daily movicol, 1 a day works for a few weeks, then back to square one sad Really had enough. Under Prof Candy and awaiting Nursing team to contact us sad

Tweedledumb Wed 01-Aug-12 20:43:00

FFS, fivegomad - what on earth would parenting classes add to sorting out a serious constipation problem? Or is it supposed to be as an additional support (even so, doesn't sound like the right avenue)? What have you said?

That's really interesting re your friend in Australia. I had a strong feeling that we'd not had the best treatment we could have done, but this thread has really brought home that it's true across the board. Really depressing.

fivegomadindorset Wed 01-Aug-12 19:17:28

Sounds positive, we were referref to the specialist incontinence school nurse who wants to refer us to parenting classes hmm

Interestingly I was talking to a friend who is a GP in Australia and ashe can't understand a) why DD has not had any physical examinations to make sure that everything is in working order and b) why we haven't been referred to a nutritionist to see if she has an intolerance, both of which are very common referrals out there.

Tweedledumb Wed 01-Aug-12 19:11:31

Ah, thanks for sharing that, cestlavie, that's really interesting.

I've asked the consultant about this specifically, particularly because my DD had heavy duty reflux meds when an infant, and also had gluten for a long time when very intolerant of it. However, he was a bit dismissive, and said it would normally cause diarrhea rather than constipation. But I know that's not the case! I think I might just try it anyway without consultant input, as there's no harm in giving it to her.

I'm really pleased it helped your son - hope he's doing much better now.

Thanks again smile

cestlavielife Wed 01-Aug-12 14:43:37

dont know if already said but my son had severe impaction and constipation/overflow issues - one gastro recomended probiotcs daily and this has really helped -we use biocare acidophilus powder half teaspoon in juice daily.

Tweedledumb Wed 01-Aug-12 12:19:40

Bumping this...

Tweedledumb Fri 27-Jul-12 12:57:48

Hi NormanboysMum - thanks for your kind message.

I'm so pleased that things sound to be finally moving forward for your son - what a terrible time he and you must have had dealing with this his whole life. I can't believe he's never had any of these tests, after all this time sad.

Not sure how things are, actually. Not as straightforward as we'd hoped (though I'm not surprised, to be honest).

We've had a lot of success coming off the Movicol - no soiling in over 3 months now. But unfortunately DD has reimpacted/reloaded a couple of times already, and now seems to have reimpacted on 20mg a day of picosulfate!! It's so hard to tell with her as it's really atypical, so she'll still be going off to do poos at least once, if not several times, a day, but stuff seems to get bunged up again in her saggy old colon.

Thanks for telling me so much about Great Ormond Street. That's really interesting to know. At present we're under a specialist paediatric gastro consultant at a children's hospital, but we've only seen him twice as we've been under the care of the associated nursing team (previous posts will tell you how that went!).

We're going to have to try and see him again as quickly as possible, and I really think we need very regular consultant input from now on, as the nurses just can't deal with this. But we're not far at all from London, and I've been wondering for a while now whether to try and switch over to Great Ormond Street if we don't get more help soon.... Definitely something to bear in mind in the upcoming months.

Will you please post/personal message soon to let me know how your son has got on? I really hope you get clearer answers (and hopefully a good prognosis) as a result of all the tests. What a brave boy.

NormanboysMum Mon 16-Jul-12 12:23:14

Hi Tweedledumb..so glad to hear that you are at last getting somewhere...how are things going ?? Really feel for you..my lad is now 10 and has faecel impaction all his life, with the soiling etc. Changed consultant at local hosital 18 months ago who refered him to the Gastro team at Great Ormond Street hospital and he is now under a consultant who specialises in motility disorders....It has been a revelation ! DS spent 3 days as inpatient last month and has every test they can possibly do on his lower intestinal tract, colonic manometry, endoscopy, colonoscopy, ano-rectal manometry, full thickness biopsy from his rectum. We go back to London next week to get all the results, but one they have disclosed so far is that he does not have any rectal "relaxation" reflex hence he cannot open his bowel.
I would seriously recommend any parent who is "getting nowhere" with local hospitals to ask for/get a referal to nearest childrens hospital who specialise in these problems. When DS was there they had 3 Dr's who where doing research, so he was able to provide a iopsy towards that and help other children. We have had years of the stress, the worry, the unnecessary comments, an unhappy child and unhappy parents...I really do hope you are getting on well !

ellenbrody Fri 20-Apr-12 16:30:49

Ha! Yes, that was the word and I remember thinking exactly the same thing! Tee hee

Tweedledumb Thu 19-Apr-12 13:08:40

Really glad to hear the constipation team are good, ellenbrody - that must feel very reassuring. Welcome to the gang of "one of those things" constipation! Did they say idiopathic? I always like to think of it as idiotic wink

ellenbrody Wed 18-Apr-12 20:40:10

Just checking in, I'm glad to hear of some successes. We have seen the 'constipation team' at the hospital who are helping to manage us now, they seem very efficient - return calls quickly and ask all the right questions! They did say that there is no way of knowing how long DD will need to stay 'medicated' and that only 3% of cases of impact ion have a clinical cause. She had a medical term for it )can't remember what it was!) which means 'one of those things'!!

Tweedledumb Wed 18-Apr-12 09:46:03

Oh no - I've killed my own thread grin

Just to see how everyone else is doing - hope your DC are doing OK...

Tweedledumb Fri 13-Apr-12 18:56:26

Ah, thanks ellenbrody - that's kind of you to remember. The consultant appointment was yesterday, actually; I haven't had a chance to post until now.

It's been a fruitful week, I think.

The first update is that we saw a new specialist constipation nurse, not part of the hospital team, on Wednesday (our health visitor has been encouraging me to go down this route for a while, as she really rates this community nursing team).

This nurse seems really clued up, incredibly friendly and efficient, and it seems very obvious from our chat with her that there are plenty of other meds we can try in different dosages/combinations before we abandon all hope. She was realistic, and wasn't promising the world, but it just looks like a service that would provide far more tailoring to DD's needs and the fluctuations in her symptoms.

She also suggested using Dulcolax pico perles (tiny little balls of stimulant laxative) to disimpact DD, instead of vast vats of Movicol. This has been such a success - DD loves them, as they're like tiny raindrops, so it's like a magic experience instead of a horrible trial smile.

This nurse also bothered to write up a really thorough and clear plan of action and then dropped it round to my house the next day and talked it through with me!

The consultant appointment was also good. I had to kick up a stink to see him rather than the registrar, even though they acknowledged we were supposed to be seeing him hmm.

However, when we did finally see him, he gave us a lot of time. He basically ran through all the possible organic (so, underlying, physical causes) to reassure us that they've been right to exclude them (and that's fair enough and quite right).

We talked about our total lack of success in finding a maintenance dose, and he basically said no Movicol if we don't need it (which I've been saying to her hospital nurse for ages, with no avail), and use stimulants which we can then juggle and increase and lower doses very flexibly according to her bowel movements - not advice we've had at all so far!

Also interesting was the fact that he said palpation (feeling the tummy) wasn't going to be a reliable diagnostic tool for DD as her impaction is often soft, so we should be going on symptoms instead. Somewhat puzzling given that on more than one occasion I've said that DD's been obviously ill again, soiling, bloated etc, but been told that she's not impacted based on palpation by the nurse...ho hum.

So, the upshot is that we're going to use this new community nurse, who seems really helpful, and then liaise with the consultant if necessary (he said I could contact him if we needed further help, which is a bit of a miracle, although notably no follow-up appointment made). I guess we'll still be in touch with the hospital nurses, but I'm going to basically try to get things under control and then just inform them what we're doing.

Sorry - really lengthy, but I thought there might be a few things in here that could be of use to others on this thread, hence the level of detail!

Hope everyone else is doing OK....?

ellenbrody Fri 13-Apr-12 10:11:26

Tweedledum, how did the consultants appt go? It was this week wasn't it?

Tweedledumb Sun 08-Apr-12 07:36:34

That's exactly what you're aiming for; hard enough for her to control, but soft enough for it to be comfortable and keep flowing through. I'll keep everything crossed that the maintenance dose goes well for your DD; let us know how you get on....

ellenbrody Sat 07-Apr-12 22:11:24

We've dropped down from 10 to 5 and halved the Picosulphate until I speak to the nurse on Tuesday, poos still like 'gravy', am not sure what we're aiming for, but a bit more solidity without being hard?? Thank you for asking!

Tweedledumb Sat 07-Apr-12 18:35:27

We've already changed consultant, though mainly by chance. I think the new one's better, if we can just see him more often...

How's the disimpaction going, ellenbrody?

ellenbrody Fri 06-Apr-12 20:26:03

Tweedle - it took a change of consultant to get any joy, first one was pants!!

Tweedledumb Fri 06-Apr-12 19:53:26

Ugh - the saltiness....yeuch. I've been testing DD's out a bit today, so hoping I haven't drunk too much myself grin

Yes, fingers crossed for you here too, ellenbrody. And that's really interesting what your consultant said about when the problem might have started - you see, DD became symptomatic a few months after cutting out gluten. So I'm starting to wonder whether the gluten really was masking this underlying problem all along...

I note that other people's consultants have at least told them practical, helpful information about what to expect. Pah! The all-time classic line from our previous consultant, when we saw him for the first time and I told him I thought DD was impacted again (DD had already been disimpacted under GP supervision) was that in a few months I'd view all this as just a developmental blip. Hahahaha!

He also didn't examine DD, as apparently she couldn't possibly be impacted if she was on 2 movicol a day. 2 months later, when we finally attended the nurse clinic - guess what? Yup - impacted.

Can you tell I'm feeling a bit ragey today?! I've just pruned a tree very hard, though: that told it grin

sunshineandshowers13 Fri 06-Apr-12 19:14:01

There's almost a saltiness to it as well isn't there [shiver] bleurgh. Fingers crossed for you ellenbrody smile

ellenbrody Fri 06-Apr-12 18:26:37

Chocolate??? Urghh. It's not the TASTE, it's the slimy texture! DD says its ok in apple juice but dosnt like it in squash. We've gone down to 5 sachets a day (from 10) so I hope we don't suffer a setback, fingers crossed!

Our consultant said it takes the bowel as long as it was impacted to be able to work properly again, but it's difficult to know exactly when the problem started, as it was probably quite a while before symptoms started.

Tweedledumb Fri 06-Apr-12 18:03:50

Chocolate movicol - is that by any chance from the studio that brought us chocolate philadelphia? grin

Tweedledumb Fri 06-Apr-12 18:02:38

Fivegomad, I'm really pleased to hear that your DD had some success yesterday - she must have felt really pleased with that (as must you!). Sounds as if it may be keeping her more cleared out on the higher dose. I've had my fingers crossed for you today - has it also been a bit better?

Re clearing impaction with stimulant laxatives, like senna, as opposed to softening laxatives, like movicol - my understanding is that clearing an impaction with stimulant laxatives alone, without softening the stool first, is not usually advisable (for obvious reasons, like it'd be worse than labour!). I thought I'd flag that up in case anyone wanted to try it home on DCs.

3littlefrogs, I'm glad you came out in one piece! (The memory of post-operative impaction is still all too vivid for me - I was in this position a few months ago, and ended up needing 2 enemas to clear it. It was far more painful than either of my labours, and another reason why I feel so very sorry for all the kids on this thread...)

I agree on the time of bowel recovery probably depending on the individual, and the length of impaction. I'm really glad it cleared up quickly for you, Highlander smile

pooandmorepoo Fri 06-Apr-12 15:53:44

we were advised that the time it takes for bowel to recover depends on the time child was impacted - they may have said 18 months for every year?

In our case we were advised it would take several years to recover as DS had been impacted for so long but no recovery after a year on movicol so as sunshine says it doesnt work for everyone but is great for the majority.

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