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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.

3littlefrogs Tue 03-Apr-12 19:00:26

used2bthin - the huge hard poos are probably due to the weetabix. Stewed apple and stewed dried fruit like figs plus lactulose would result in softer poos that would still be bulky enough to encourage a regular habit. Oranges are great for constipation too. 3 weetabix in one go would be too much for me and I would end up very bunged up!! I suffered from this very problem all through my childhood and only really got it sorted in my twenties. I never eat high fibre cereals, and restrict my wholemeal bread to a couple of slices a day.

I don't need any medication, but I watch my diet very carefully and drink loads of fluids.

sunshineandshowers13 Tue 03-Apr-12 19:10:28

My understanding was that senna caused your bowel to contract thereby propelling the poo through. And unfortunately senna was the only - and i mean the only thing that worked for my dd. She was on 30ml of senna daily for around 3 years and this usually kept her clear. There were still some days where she didnt go but on the whole it was senna that kept her going. We tried everything including lactulose, movicol, docusol (docusate), sodium picosulphate, picolax, enemas, suppositories and more and combinations of them!
Also in my dd's case it was (and still is) completely irrelevant what she ate. In "normal" (for want of a better word!) people the foods 3littlefrogs mentions will of course be beneficial but i think in children like mine/ours its irrelevant (certainly in our case).
I'll also mention that when she had her colonoscopy in october there was mention of some inflammation that is being attributed to her senna usage - but it was mentioned as being of little significance and improving all the time now she is off it. I wasnt happy giving her enough senna to make a horse poo - but we had no alternative.

sunshineandshowers13 Tue 03-Apr-12 19:17:32

And tweedledumb i was thinking about your consultant appt. I think i spent a long time pretending we were coping and that we could manage. It was an act although i can only see it now looking back. I honestly dont know how we managed for so long and i also dont bloody know how the consultant didnt realise there may have more going on.
I think everything changed when i held my hands up and said - do you know what this is bloody awful and we cant carry on. My dd of *7 yrs old* wants to kill herself to escape this horrible horrrible thing and you have to do something to help us now. Its in a mums nature to pretend that we can cope and manage and soldier on looking after our darling children and sometimes the best thing we can do is admit actually we cant.
I know i asked for help many times from the hosp (saw the same consultant every 3 months for 5 years) but can only think i didnt make it urgent or clear enough how bad things were, and of course i trusted their diagnosis of basic childhood constipation. I hope you can make your situation clear to your consultant and that he listens and acts to help your family. Fingers crossed for you smile

sunshineandshowers13 Tue 03-Apr-12 19:18:32

ooh goodness they were a bit wordy - sorry blush dont really like to talk too much in rl about this as dd now very embarassed!

sunshineandshowers13 Tue 03-Apr-12 19:23:00

ooh and used2bethin - movicol shouldnt dehydrate if you mix it with the right amount of liquid - thats meant to be the beauty of it. It works by travelling through your system as a whole liquid to the bowel instead of something like lactulose which will absorb fluid from the rest of the body. hth

ellenbrody Tue 03-Apr-12 19:28:39

Well said Sunshine, that came from the heart. (my dd has also said how she hates her life sad )

sunshineandshowers13 Tue 03-Apr-12 19:32:45

thank you ellenbrody - i felt like i had failed her and it just broke my heart sad

Tweedledumb Tue 03-Apr-12 20:01:35

Yes, it's the feeling of having failed them that's so, so terrible - and particularly when you've managed to miss the fact that they're impacted (DD had all kinds of investigations, including heart scans for the heart murmur she'd developed, prob because her poor little body couldn't cope sad). I'm interested to hear that other people's DCs have had this missed, too.

Sunshine, you're right. I've been trying and trying to convey to her nurse that we can't go on like this. (I know the total time is a tiny fraction of what many of you have experienced, but actually all the more reason to fight now, it's becoming clear from this thread). I just keep getting the brush-off, and have to wait and wait for an appointment with a doctor, while fannying about with different doses that never work, and getting the usual stuff about toileting and diet (both of which I strongly suspect make bugger all difference in DD's case, but that's just a hunch).

I even said that it was making DD really distressed, and asked about psych support. But got told that she was too young (I know this is not the case, as a child psych friend of mine suggested it!), and that I should just downplay it all. Already a bit late for that.

Meanwhile, because I want to be reasonable and keep everyone onside, I keep being polite and reasonable myself. I thought that would get results, but obviously not....

Tweedledumb Tue 03-Apr-12 20:07:19

Ellenbrody - have you actually complained formally about these misdiagnoses? What on earth did these doctors say by way of explanation? I think the problem for those of us who had to fight and fight to even find out what was wrong is that we're exhausted by the time we get to the starting line on actually battling over the constipation!

I'm so sorry your DD feels so sad about it, though not surprised. Good luck with your first disimpaction.

We're currently trying to disimpact DD while she has a temperature of between 39 and 40 for the last 3 days, with raging nausea to boot. Suffice to say that, having just reached clearout, I've had to bring the movicol dose down as she just can't take it. So will probably have to re-start next week. Poor old poppet sad.

Tweedledumb Tue 03-Apr-12 20:11:29

Pooandmorepoo (feeling I should have claimed that name for my OP!) - I'm so sorry that your son's had to go through so much before any investigations were done. That must have been so worrying and distressing for you.

The thought of basically just leaving a child ill, until they're so ill it's affecting the very way their body develops - it makes me so angry.

Interesting what you say about iron levels. When DD had full bloods done prior to anyone realising that she was impacted, the iron was quite low (though not anaemic). I'd assumed with hindsight this was probably an absorption issue, but noone ever specified....

pooandmorepoo Tue 03-Apr-12 21:18:51

I doubt anyone has ever had any success complaining about misdiagnosis because it is impossible to prove child was impacted at that time even if later found to be so. I would be very interested to hear from anyone who has tried complaining. I think it is one of the most commonly misdiagnosed illnesses.

I would be very wary of pushing for psychiatric help as it can easily be twisted round to the constipation being the result of stress or even abuse rather than the stress being as a result of the chronic constipation especially with extreme pain and soiling but no diagnosis. To the extent of children actually being registered as a child protection concern with no evidence other than these symptoms.

Only those whose childern have had their whole lives affected by this condition such as sunshine described can know the stress it causes the whole family, it is unimaginable to most people which makes it very hard to discuss in RL. No friends, no social contact for the rest of the family, being called stinky at school, loss of self esteem, anger at being in pain and being bullied or just at the unfairness of life, no appetite, low iron levels, often also causing day and night wetting, poor growth and depression to list a few.

ellenbrody Tue 03-Apr-12 21:39:56

No, we havn't complained, but my DH got VERY angry at their apathy toward us which resulted in an apology and swiftly changing us consultants to a specialist who (touch wood) has been good, she said how surprisingly common it is and she sees a lot of it - poor kids sad

sunshineandshowers13 Tue 03-Apr-12 22:10:11

we actually did get some pyschological support - but onnly after my dd expressing her wish to no longer be on this earth angry thats what it took!

Pyschologist was lovely but dd was embarrassed talking about her acciddents and poo and was really not going to talk to this new lady that she has only just met no matter how nice she is. I also think that she just didnt understand how bloody awful it all was for her and us as a family. There was never any suggestion of the constipation being the result of anything "done" to her.
Talking about iron levels - when dd was in hosp in oct for scopes they of course took gallons of blood. Got the results in MARCH saying that she was very anaemic and to start iron. So; you are really telling me MR DR CONSULTANT who is meant to know what they are doing to give my extremely constipated and impacted daughter IRON. seriously. give me strength.

fivegomadindorset Tue 03-Apr-12 22:11:45

It just goes on and on and on, fed up of all my clothes smelling like shit. The paediatrician has made us chnage the time we give DD her medication which measn that she is now back to soiling at school.

sunshineandshowers13 Tue 03-Apr-12 22:16:00

should have clarified actually - of course if she needed iron then she needed it and i would have given it to her albeit reluctantly. But by the time we got this result she was the healthiest she has ever been.

This thread has progressed a bit so i feel a bit more comfortable saying more about our situation. We started peristeen back in Septmeber and it has been immensly successful. My girl is now healthy, not constipated, hasnt had a soiling accident since we started, has a varied diet, has gained weight and height not to mention confidance and freedom and independance which she didnt ever have before.
I suppose i didnt want to mention it in case i made you all worry about the outcome of your own child and situation blush hope i havent upset anyone by not giving all the info from the start.

sunshineandshowers13 Tue 03-Apr-12 22:17:00

five - has your dd any help to get cleaned up at school? Must be very hard for her to manage on her own sad

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

They are very good with her. She had just got it sorted that she could get through the day without wetting herself and soiling herself and now feel we are slightly back at square on, we will see how we get on this holiday.

sunshineandshowers13 Tue 03-Apr-12 22:22:17

how old is she five? Its hard isnt it when there doesnt feel like there is any progress? And holidays should be fun whereas i felt we always used to have to change dosages and be near a toilet!! some fun eh?!

fivegomadindorset Tue 03-Apr-12 22:27:02

She is 6. I do find it sad as I still have to take spare clothes for her and not for her brother who is 3. We tend to do things in the morning if we go out and she is good, but when she is at home she relaxes and it is all day. Mum has given us some money to buy her some summer clothes next week as I just can't afford the amount of trousers/shorts when she can get through 6 in a day.

sunshineandshowers13 Tue 03-Apr-12 22:33:49

i know that feeling well five. i hope this change in meds works for your dd.

HansieMom Wed 04-Apr-12 03:33:17

Toadsporn, you said your daughter may have to have part of colon removed? I read about a child aged around nine who had a tunnel made at the bottom of her ascending colon. Her mom would give her an enema each day thro the opening, which would move the bowel contents along for normal evacuation. They might have used her appendix for the tunnel. While not sunshine and roses, this would be preferable to removal of part of her colon.

Tweedledumb Wed 04-Apr-12 06:31:51

You're quite right on the misdiagnosis point, pooandmorepoo - it's just too difficult to prove. However, it still seems mighty unfair that these kids get left for so long.

Your wording on psychiatric help (it's actually play therapist/psychologist I'd be after, but suspect we're along the same lines) is very strong. I see where you're coming from, but is this really the case? Have you actually experienced this, or do you know other cases where this has happened?

ellenbrody - good on your DH! Maybe you need to hire him out to people like me who are being too nice about it all wink. Actually, if my DH started, I think he'd never stop!

pooandmorepoo Wed 04-Apr-12 10:17:43

Yes i do know personally of a case where a family was referred to a mental health team team when the paed was unable to diagnose their childs condition.

Child protection concerns were then raised for emotional abuse as they had not found a medical cause for the soiling.

Luckily another paed diagnosed the medical condition at the parents request for another opinion just days before the professionals meeting to decide on outcome of the abuse!! Concerns were then dropped but no apology! It was very serious and has destroyed the family of course.

HansieMom Wed 04-Apr-12 18:33:46

Five, you should check out used clothing stores. The clothes are soft from washing. I like buying there. You can sure tell quality brands from cheaply made ones there, and she can have some quality cute clothes for not much money.

I'm in the states. I have not seen encopresis mentioned once. We are talking about the same condition (mostly)--fecal impaction, diarrhea slips past, cleanout needed, then regular sits after meals and maybe bedtime to use gastrocolic reflex to produce bm. Also medication regularly, it all takes years.

One mother in a forum talked about The Smell. The family would get ready for an outing, pile into the car, get going, then be faced with The Smell.

So, in England, do you not use the term encopresis?

sunshineandshowers13 Wed 04-Apr-12 20:31:53

Hansie - think we are talking about the same thing smile
Here it seems to be labeled simply as chronic constipation or idiopathic constipation.
Is it something that is readily diagnosed in the states and do you know of any support on offer?
I'm afraid it seems that there are too many children and families for whom this is a way of life sad

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