2 years of treatment and no improvement

[Tw1n5]

Hello

My little girl is 5 years old and has struggled with constipation and withholding since starting pre-school when she was 3. We have undertaken 2 years of treatment with laxatives, toilet sits etc and things have never improved. During a good phase, she has a few soiling accidents a week. In a bad phase she is having multiple soiling accidents per day. These aren't just smudges of poo in underwear - sometimes these are full poos that go down her trousers to her feet. Obviously this is causing huge problems with her now being in school.

I've done absolutely everything I can think of to help her. We've tried disimpaction, maintenance laxatives, stimulant laxatives, potty sits, potty toys, alarms, being a "poo scientist", keeping poo diaries. I've read all the books I can find about this condition. I've paid to speak to a specialist nurse privately, and still we're struggling for things to improve.

Things are as bad as they've ever been. We are trying to disimpact now, on 12 sachets a day and adding in 10mls of Senna on Saturday. We 've never successfully disimpacted (never had the rusty tea with bits), and advice seems to be that we can't disimpact forever, and just to go back onto a maintenance dose if disimpaction isn't achieved.

I just don't know what to do next. We've tried contacting paediatric gasto specialists in our area, but we haven't heard anything back from our enquiry. We're also on the waiting list to see our local Bladder and Bowel team, but it's a 9 month wait and is only a phone consultation in any event.

My questions are:

1. Does anyone know what the pathway should be if we can't disimpact from oral laxatives and stimulants alone? Are there different stimulants / enemas etc. that we should be trying, and if so, who prescribes these? Is it the GP or does it need to be a specialist?

2. Has anyone in the UK had any more involved investigations? I know in America they would do an Xray to check the extent of the problem. Can we get that here?

3. Has anyone in the South of England got any recommendations for paediatric gastro specialists we could see about our daughter? We're in Bristol but we'd be willing to travel and to self-fund to try to get her some help.

Thanks so much.

[ERIC-Charity Partner]

Dear Tw1n5

This sounds really stressful for you, have you made contact with our Helpline at all? the team will be very happy to offer support.

The NHS has a National clinical pathway for constipation, which can be found here england.nhs.uk/publication/...

You might also like to look at NICE Guidelines for the diagnosis and treatment of constipation nice.org.uk/guidance/cg99

Finally, here's a link to our Poo Ladder which details the different levels of intervention eric.org.uk/poo-ladder/

Do reach out to the Helpline for further support. best wishes, ERIC

[Nozzynozbourne in reply to ERIC-Charity]

Hello - thank you so much for your reply. Yes - I’ve spoken to the Helpline team a lot. They’ve been so so helpful, and I don’t know where we’d be without them. But I know that they can’t offer individual medical advice. It feels like the GP system is failing us a little, as we just get sent on our way. Most of the time with the GP, I go into the consultation and ask them for what I want based on the Helpline’s advice (e.g. I think we need to disimpact, I then have to explain to them what disimpaction really means (the GP advised me to up the dose by a few sachets for 3 days), ask them to add in a stimulant laxative etc.) . The GP then just authorises the prescription based on what I ask for. They don’t seem to have any real knowledge of the condition, so I feel like we need some specialist input.

We have a GP appointment tomorrow, so I’ll keep my fingers crossed. We’re three weeks into disimpaction now and still just sludgy poos. My little girl is struggling to take all the fluids on board plus she has a cold now, which isn’t helping.

It’s good to see the poo ladder. I hadn’t seen that resource before.

Thanks again for your help x

[Aggie82 in reply to Nozzynozbourne]

Hi, my daughter is nearly 7 years old and has been constipated from around 2 years old. I aggre with you that GPs knowledge is minimum and not helpful at all. I battled them in the last few years. They were prescribing movicol without any mention about disimpection regime. I have to mention that my daughter doesn't go on the toilet for pooh, it's either soiling or nappies. When she was 4 years old I have pushed GP to request a pediatrician appointment but Hospital refuse it cause apparently they not dealing with constipation. A year later I have pushed for it again and we got on the waiting list. 10 months later still on the waiting list...I rang Hospital and said that I have enough,that this affecting my daughter and our family life,mention anxiety and depression. Next day I finally received an appointment. Pediatrician explained me about disimpection regime and her trauma. Any GP could do that in the last 4 years. So much time waisted. We just finished disimpection and trying to find the perfect balanced dose. It will take months or years for her now to overcome her fear. The health system is failing extremely. The country that I come from a pediatrician is a doctor that child see in the first place,not GP. In UK seeing a pediatrician is like winning a lottery.

[Constipated in reply to Aggie82]

Have you found out why she might be holding in on purpose?I began holding in age 13, because bullies were teasing about taking so long in the toilet,so I quit poop at school completely,and at home I shared a bathroom with 3 sisters ,so I rarely had time to poop in peace.

Add to that a poor diet (to much cheese) ,and it turned into chronic constipation and severe impaction,I was going 5 to 6 days in between bms.

Mom took me to doctor,I had mega colon, impaction, hemmoroids all by age 13 ,I was too embarrassed to tell mom or the doctor about the bullying.

This was back in the 1970s ,and the only cure for impaction was weekly enemas ,it took 4 years of enemas till I was cured , embarrassed but necessary.

[Marc3456]

We are in exactly the same position. I feel like I could have written exactly the same post 2 years in with our 5 year old and just having tried/failed for 10 weeks to disimpact and now back to soiling when we came down slowly from 10 to 4 movicols despite staying high on picasulphate. Were having help from a continence nurse but the suspicion is no one really knows what to advise once you've done everything in NICE guidance. The best thing I can advise while trying to figure it out, which is what we're trying to do, is try to stay positive and relaxed and minimise the stress you pass on to your little one - easier said than done but it's a good starting point

[Purplepanda1981 in reply to Marc3456]

This sounds so similar to us. Our GP has advised once we've achieved rusty tea in this latest disimpaction to slowly reduce to 6 sachets then reduce by a quarter of a sachet at a time every 2 weeks. Any signs of constipation to go back up. He thinks our 5 year old needs a maintenance dose between 4 and 6 because when we went to 4 last time he started bunging up within days. But this disimpaction we've had to keep upping picosulfate and been very slow to achieve so I'm not sure that even helps him!