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.

OneNostrilTooMany The child will do solid poos if given enough stool softener or perhaps a microlax enema. The runny liquid will bypass the solid matter and sometimes people might think this is diarrhoea. If someone is becoming impacted they experience a lot of pain, nausea and their breath might start to smell faecally or just plain nasty. If a person becomes totally obstructed they will vomit faecal matter and are at risk of rupturing their bowel.

If the condition is chronic, they may do solid poos, but there will still be matter further up the bowel which is constipated and at risk of becoming impacted. It shows up well on x-ray.

Yes florie.

Time and place.

Maybe time to leave it now eh?

OP, does your DC still suffer from impaction or has it been rectified by the drs ?

Is there any way that you can contact the Community Continence Nurse in your area, maybe ask the nurse for their details and see if they can help.

My dd is disabled and doubly incontinent and requires daily bowel flushes, we were prescribed Movicol which definitely works well maybe the drs could give your DC this.

For those asking for an update on my DC yes the impaction is cleared and DC has already been on maximum dose of movicol for a year. Whilst bladder control is gained almost immediately once on the medication it takes years to regain bowel control. We were advised that it will be two years of medication for every year it was misdiagnosed and left untreated so I am guessing DC will be on medication until an adult at least. My poor DC still cannot feel if a stool has passed or not as the bowel was so stretched and has to look in the toilet to know as there is no sensation. We have to follow a rigid toileting routine with DC sitting on the toilet after every meal.

LeBof - glad you had a positive experience with paediatricians who were able to diagnose it easily. This was not our experience as all professionals including GPs Paediatricians, incontinence nurses etc failed to diagnose it. We ended up referred to a team of psychiatrists, psychologists and social workers looking at fabricated non medical reasons whilst my DC was in absolute agony, very angry and unable to eat.

It's even worse if your child suffers from faecal impaction on a regular basis, your PCT refuses to prescribe movicol, AND there is no continence service in your PCT. DS2 has awful problems with this, despite all the preventative measures we take (Lots of fresh fruit and veg, keeping him hydrated, regular tries on the loo blah blah blah).

I've only had a diagnosis for the last 11 months and now on long term movicol which has slowly been reduced. It took a private surgeon to diagnose but was paid for by the NHS as they wouldn't reach their targets. I can now distinguish if it's building up myself but would never have known before so how can a child tell when its all they've ever been used to?

HuntyCat- do you know why your DS2 suffers from it regularly. I was doing some internet research on it last night because of DS1's problems and found some interesting things.

It is more difficult to diagnose because (rightly) invasive rectal exams are no longer routine in the first instance. Whether a child or a very elderly dementia patient, professionals should be looking at the signs and symptoms and listening to the patient/parent/carer. It is the most horrible experience for any human, the condition and the treatment. I believe there are times when the old fashioned exam that could make the patient feel uncomfortable could still be better than the condition being ignored or misdiagnosed. It isn't a little bit of constipation, it is a serious problem. I am a nurse, I find poo quite funny sometimes, not impaction though.

I'm so sorry to hear about your DCs OP. My DD has cancer and a side effect of treatment has been severe constipation leading to fecal incontinence and huge doses of movicol. It's horrible; I really feel for your DCs having to go through that at school. They must be very brave.

Huntycat - I am horrified. Our child will be on movicol for years now. My understanding is that without long term use of movicol the impaction will just keep reoccurring regardless of diet or fluids. Have you read the NICE guidelines CG99 as I understood that PCTs had to follow this and that would included prescribing movicol?

Yes. I am in, erm, (polite way to put it...) dialogue with my PCT at the moment on this issue. Cause? Possibly related to bowel issues that plague dc with Autism...

Hunty that's interesting. DD has had so many bowel issues in the past before the leukaemia, and I never realised that autistic DC were more prone (she's Asperger's). That could explain a lot. Thanks.

kinkydorito - sorry about your DD. I used DC to mean a child not children. Luckily all my other children are healthy and fine but were affected by the stress of the situation and by DC's anger. Not sure if the other parents at school would agree that my DC was brave as the reaction to the teasing and being called stinky was to retaliate with violence, luckily this has ceased now.

My DC was being assessed for aspergers as part of the misdiagnosis, we were aware that autistic children had more bowel issues. We were told that it was not aspergers just extremely intelligent but there are certainly sensory issues and many other similarities.

This is interesting to me. DD had impaction at the beginning of the year but with a dose of movicol, managed to progress to doing solid poo's but now reading this, it seems like she should have been on it for longer?

Also, am I right in reading that incontinence problems re: wetting could be caused by impaction? DD wets herself everyday and has no sign that she is wet. However, she is 2.9 and has been in knickers for 6 months, is this impaction problems or just her age?

My Dr is regularly fobbing me off with lame excuses as to why she has had loose poo's and pain so would be interested to read responses on this.

Think DD1 may have this - she's been in pain since November, tried Buscopan and lactulose, school are now starting to ask why she is not being treated by GP, but GP keeps saying carry on taking medicine. So how can I get a diagnosis? What is the key to getting a referral, and who to - paediatrician? Am seeing GP Monday morning so if medical or anyone can come back on with ideas would be very very grateful - wonder if this needs to be moved to children's health or general health, or if its best saying on AIBU so that it gets more traffic.

DS1 was referred to a paediatrician 10 days after the start of his symptoms. Given the intensity of his symptoms he was seen within hours of the phone call from the GP. It was diagnosed following a stomach X Ray and they kept him in for a night until the medication had started to work.

I am a community nurse and quite often do the good old rectal on pts to see what state the rectum is in. I'm guessing this isn't routine on children/

kingbeat - day and night wetting are very classic symptoms of impaction as it can put pressure on the bladder. A child with wetting should be always be assessed for impaction according to NICE guidelines. My DC wet 10 times a day and always had a damp patch and leaked through pull ups at night. Within weeks of being on movicol all wetting stopped both day and night. I think it is a miracle medication - totally life transforming. Our experience has been that GPs have no knowledge of this and paediatricians not much more. Read the NICE guidelines, list all possible symptoms and ask for second opinions and xray if necessary. Friends who have been private for this condition have been given far more advice and support once diagnosed than we have received on the NHS even since the misdiagnosis.

In addition to the classic symptoms of constipation some of the less well known symptoms can include the following :- sorry if T.M.I.
Day wetting or constant wet patches on pants or little warning of the need to wee.
Needing to wee more than 8 times a day or more than once an hour.
Low iron levels as nutrients are not absorbed properly which can then cause tiredness and irritability.
Poor or variable appetite as impaction can make you feel full.
Pain which may manifest itself as anger or bad behaviour or depression in children as they cant explain the pain.
Distended stomach but the impaction can often be felt by a professional
generally feeling unwell.
Growth can even be affected.
Diarrhoea which can be overflow seeping round the impaction.
Soiling/sneaky poo especially little bits/smears in pants regularly.
Long thin pencil type stools.
Tiny dry flaky crumbly bits around bottom and in pants.
Small pellet type stools.
Passing stools in bath or immediately after as water acting as an enema or during the night.

NICE recommend investigating for impaction if there are just a few of these symptoms

There does not need to be any classic constipation ie straining to pass hard stools for an impaction to be present
95% of children with soiling is due to an impaction it is therefore quite rare for it to be anything else

I would add vomiting and extreme stomach cramps! And depending on where it is, the impaction can't always be felt...

Missbetsy - thanks for this - I think this is the problem that the symtoms can really vary and even how it affects children from listless depression to real anger. You were very lucky to have it diagnosed so quickly. Our family was almost destroyed by the misdiagnosis, we will never trust any professionals again and my DC's childhood was ruined and I dont think will ever fully recover from the psychological trauma or be accepted by the other parents, hopefully the other children will be more forgiving.

DC never had vomiting and am unsure re cramps as my DC has never been able to vocalize any pain instead would just lash out in anger at unexplained times which we later realized were linked to pain. Totally agree impaction cant always be felt.

Would welcome any other additions to the list to raise awareness and help others to self diagnose when professionals are unable to!

His was a very acute case that became very bad very fast. I'm loth to add more information about his symptoms but the X Ray did give pretty conclusive evidence of the impaction. It also helped rule out the possibility of appendicitis or obstruction.

It makes me so sad to see the extremity of the impact this has had on your family's life. Your DC is very lucky to have parents who persevered for her.

with my child it was one straightforward trip to the GP to diagnose, it's a shame that not all GPs are so clued up. We eventually got a continence service referral, which was v helpful, and the nurse felt GP had advised well.

Hunty, I thought Movicol was available OTC, or is that only for adults? Though am v surprised that it's not prescried in some PCTs

Sorry I meant that everyone is welcome to add any symptoms I have not included in order to raise awareness not just missbetsy

Thank you, I think I'll take DD to the GPs and see what they say.