AIBU to think faecal impaction should be easily diagnosed by the NHS?

[medicalmisdiagnosis]

Have been following a thread on AIBU about a DD wetting herself. Several of the responses are from parents whose DCs have experienced misdiagnosis of faecal impaction by GPs or paediatricians. We have also had a dreadful experience of misdiagnosis resulting in my DC being in constant pain for years and being bullied and called stinky at school and having the other parents asking for DCs removal from school for reasons of hygiene.

Surely professionals should be able to follow the comprehensive NICE guidelines and the map of medicine website in order to carry out all the necessary assessments to ensure it is promptly diagnosed. 95% of children with soiling problems have this condition according to NHS research and it is also a very common cause of wetting so it would be reasonable to rule it out before concluding that the problem is due to behaviour or abuse.

I was lucky with our Dr, who took the trouble to listen to me about DS. He's always suffered with constipation ever since he started solid food. He's now almost 8, and we have been on a repeat prescription for Movicol for him for about 3 years.

Our Dr is now more sympathetic about this because his DD (younger than my DS) also suffers.

We've been using the Movicol in conjunction with coaching DS about his body and how to tell when he needs to go, with the result that as he got older and could talk about his body and how it all felt, he can now do his poos regularly, just needing a dose or two of Movicol (aka "tummy juice") when he can tell it's building up again. This is prob now about once every three weeks approx. He likes to tick the calendar when he's done a poo, so I do get an idea of his habits.

I've often had the feeling that as a baby he instinctively held it back when needing to poo as it hurt, so using the movicol helped reduce the pain, etc which enabled his to realise it wasn't so bad after all.

Bowel problems are very common in my family on both Mum's and Dad's sides, so perhaps I shouldn't have been surprised to have one DC who had an issue! Most of the children who had problems did eventually grow out of it, so I am hopeful.

interesting. I read the guidelines, but my GPs don't take kindly to me advising them on possible causes for discomfort to myself or DD. We shall just see what happens. DD was nearly ready to come out of nappies at 18mo but then suffered chronic constipation and was on movicol for 4 months, cleared it and I restarted toilet training her.

Recently (for the past 2 months) she has started wetting again but this was thought to be a regression and possible laziness on her part, now i'm thinking not.

I'll go back and find out and see how they take to me diagnosing her again, thanks for bringing this up as part of me knew it wasn't laziness but maybe an inability to not recognise the signs of being about to urinate.

Another one that's really read this with interest.

Need to do some googling and some thinking about DC, but thank you OP for raising this here.

Hope your DC is on the road to a happier childhood now.

kingbeat - I agree dont go to the GP and start by saying what you think it is. I would recommend however giving them a list of your DDs symptoms based on what you have read on NICE guidelines or on this post ie mention previous constipation, wetting, how frequently she needs to wee a day, if there are damp patches, how much warning she has of needing to wee, night wetting etc if relevant in the hope that it prompts the GP to consider it.
If the GP doesnt have a plan to investigate further then you could say someone had suggested impaction to you and hope that doesnt sound like you are trying to do their job.

This is a really good website - Childhood Constipation

Thanks sidge - lots of useful information but do note that the site is sponsored by the makers of movicol so all articles including all the true life stories promote the use of it.

Having said that I think it is a miracle drug that has certainly transformed our lives just not sure if it does for everyone.

It is, but I think despite that it's a very informative website. And given that paediatric Movicol (or equivalent) is first line treatment recommended by NICE I think it's reasonable to promote it!

Read this with interest too, thank you medicalmisdiagnosis. It is a problem that affects both my DD and DNiece.

I asked for my DD to be assessed for impaction after reading about it on Mumsnet! Movicol has cleared it up and she is so much happier and healthier. I dread to think how long she'd have had to cope with the pain and humiliation otherwise.

DS is on movicol due to a rectal prolapse ( having previously had bowel surgery at birth to remove a blockage and he had a colostomy bag for a while).

He still has issues with controlling his bowel movements and he still wets the bed (8yo) could faecal impaction be the cause, even if he is having the correct dosage of movicol? I am yet to approach the GP as DS has asked me not to as he is embarrassed. He also tends to urinate a lot in a small space of time (four times in one hour), but then will go hours without needing the bathroom.

This has been a really useful thread OP, thank you.

It was thanks to mums net that ds1's constipation was dealt with quickly.

I read on here about movicol. Went to GP and asked for it and blimey did it work. He had it for about a year, gradually deceasing the dose. I would have been clueless.

Looking back, he was withdrawn and quiet for a long time. Angry. He is a different child now.

And he ate heaps of fresh fruit and vegetables and drank loads.

Yes, I DO get it over the counter - but I don't always have the money. I am on a tight budget as am a Lone Parent on benefits. Once you add in the fresh fruit and veg that I buy to try to help, I don't have much money left.

My PCT may be unusual in the fact that they are near-enough bankrupt, and don't prescribe hardly anything. They don't even prescribe the test-sticks for diabetics, cream for BABIES with severe exceme, any epilepsy pills that aren't generics (which often don't control seizures as well due to having a different half-life to the branded pills), headlice lotion, and plenty of other things.

We don't have a Neurologist OR an epilepsy nurse, we have just ONE SALT to cover an area with a population 1/3 size of Central London, ONE physio, no continence clinic. Only telephone contact with an asthma nurse, even for the most severely affected. Only one orthotics specialist. And these are just the services that affect MY family. And I am, apparently, no longer allowed to even go and see my out-of-PCT-area Neuro as they can't afford to fund it. I was only 'allowed' to go once a year before, now NO-ONE in my PCT has ANY access to a Neurologist. (I, along with a whole group of others, am fighting that decision).

sounds like you are massively struggling for healthcare for your family Hunty, sorry to hear that.

Reindeer - yes, chronic constipation/impact can affect bladder control.Hope you can persuade him to discuss this with GP.

Reindeer - NHS guidelines recommend assessing for an impaction if there is night time wetting as it is a symptom. Also weeing more than once an hour or more than 8 times a day are listed as symptoms of an impaction.

Even on movicol he could still be impacted as it can take a huge dose to clear the impaction so it may never have fully cleared. If the movicol has properly cleared the impaction then my understanding is that bladder control should improve. Certainly in our case day and night control was gained very quickly once the impaction was cleared.

Main problem is that the distension of the bowel can last up to a year and a half afterwards - so the problem often recurs.

Hunty - our consultant advised that it would be 18 months to 2 years for every year that DC had suffered with the condition for the bowel to return to normal so in our case it could take years.

Has anyone tried eliminating food such as wheat or dairy to help this?

DD has been referred to paediatrician today, but I'm none the wiser - they keep finding traces of blood in urine. Wonder if that means its not likely to be impaction?

I tried eliminating milk. This was before DS was diagnosed with faecal impaction. A milk intolerance was put forward as something to look into by the school. Also at DSs last appointment I was told by his consultant not to give DS glasses of milk to drink because a large amount of milk in the diet may cause constipation (or at least won't help shift a blockage).

Anyway, long story short re eliminating milk, there was no different. TBH I breathed a sign of relief. What a nighmare to keep to a diary-free diet.

Hope you don't mind me joining and asking a few questions..my 4 yr old DD has been on movicol for about 18 months now and I sooooo know how much the whole poo thing can take over your life. We're now on 2 sachets a day and I still feel like things aren't right. I saw that Huntycat said that the bowel can take up to a year and a half to recover but is there anyway you can tell whether it was blocked, or stretched or still is blocked? You see I don't know if she was ever impacted or if it was just a bad case of constipation, but I just want to make sure that there isn't blockages in there.

My daughter always has the long pencil type stools which always finish with very runny dribbly type poo and her appetite is always variable.She eats really slowly and it's always worse when she hasn't been to the loo and I know she needs to. She's always complaining on and off of a tummy ache and the whole thing just worries me. Is it the movicol, the poo, just a 4 year old saying her tummy hurts to get out of eating?

She has a good diet I think, lots of fruit, veg..and she drinks ok but I suppose I could try to get her to drink even more if that would help. I just feel so sorry for her as she changes so much when there's poo to be got rid of. She's lethargic, grumpy, gets tetchy and moody...well I'm sure this sounds familiar!

Whenever we've been to the docs they've felt her tummy and said it felt fine, but reading that blockages can be missed has got me concerned. Are there any tests/xrays that I can push for to make sure that there really aren't any blockages still there?

ta

bobkate - xray showed the blockage in our case. Has a paed rather than a GP felt her stomach for impaction although our paeds still missed it?

In our case a year on from impaction being cleared and still on maximum daily dose of movicol symptoms sound very similar to yours ie pencil stools, irritable and stomach pain but also have explosive stools and virtually no appetite - eating half the recommended calories according to the dietician. My DC still cant feel the passing of a stool. However it is a huge life transforming improvement to the time before the impaction was diagnosed.

I do wonder if there could be food intolerance but I cant remove the obvious foods when calories are so low anyway without proper support.

Friends who have been private have been given far more advice on dose and diet after impaction has cleared and seem more satisfied and I am considering this just to be sure that we are doing everything we can and that this is the correct speed of progress.

Thanks mmis...hmm I think I'll make another appt to see the docs, may try one of the others this time just for another opinion. Haven't seen a paed yet - do you think I should push to ask to see one, as she's been on the movicol that long?
Yep - my DD has explosive poos too....I'm glad that your DC is showing some positive signs of improvement, but it's so sad seeing how it affects them isn't it. So frustrating in many ways