Disimpactation always needed?

[Mummybecs]

After 2 years of waiting we finally got a telephone consultation and a dr who agreed with me that my 5 year old has had chronic constipation (hooray!) causing his soiling.

We have received the movicum sachets and letter regarding dosage and it says just 1 to 4 a day to find the right dose. Nothing about more to disimpact. Everything I have read seems to start with a full clear out. Has anyone else just been told to start like this? I'd go back to the dr but goodness knows how long that will take!

For context he doesnt soil daily, he goes through cycles of no accidents for a few weeks, then daily ones.

Thanks

[Yaleamanda]

Soiling is usually a clear sign of impaction and therefore you need to disimpact.

[Starryeyes2000]

We were prescribed the same and only told to disimpact after a trip to A&E. even then we were told not to go above 8 sachets. All this meant was that we never fully disimpacted. Our third attempt was in May and we built up to 12 sachets a day, stayed on 12 sachets for three weeks and now on 5 a day. My daughter has had a poo daily since this disimpaction and her poo looks more like what they want from the Bristol stool chart. I got so much conflicting advice but it was someone on here who suggested I keep her on a higher dosage for longer, not to rush to get her down to fewer sachets. I imagine her bowel is completely stretched so giving her help to pass poo softer has been great. Good luck with it all xx

[Bambie83]

I was only told about disimpaction when speaking to Eric! The GPs seemed to know very little about it... I ended up being told to go to A&E for suspected appendicitis! Doctors put her on more antibiotics (which I think caused the impaction) and soon she was soiling her self all the time.

At no point did anyone mention that it could be a blockage and so by the time we figured it out she was in quite a bad way.

My advice would be is to follow your gut instinct - disimpaction is messy but completely harmless and if done well (and not rushed) can be very affective.

[Sammy4421]

It took us a year to finally get referred to a paediatrician. Armed with info from the ERIC website, helpline and this forum, I also finally convinced our GP to give us enough for a disimpaction. We were on a fourth day of 12 sachets per day (having done 4, 6, 8, 10, 12) when we saw the paediatrician and she said our son (now 7) was still very full of poo. I think it’s really important to have an in person appointment so the doctor can feel your son’s tummy and give you specific advice. All the guidance is just that, guidance - everyone needs different doses for different lengths of time, but a full disimpaction is definitely the first step!

It’s hard work getting through to the GP if they don’t have much experience with disimpaction, so your best bet is to educate yourself as much as possible using the ERIC website and helpline and NICE guidance for disimpaction.

I’m going to be on the phone to our GP again today to get more Movicol - you’re not alone in the struggle with the GP, but it really helps to feel confident in what you are asking them for. Good luck!

[Mummybecs]

It was actually the specialist not GP who has prescribed this, after the GP saying it was behavioral for 2 years. He isn't soiling daily, it comes and goes in waves and at the moment he hasn't soiled for about a week, we are doing 1 sachet a day

[Sammy4421]

In our experience, if you haven’t done a full disimpaction, giving 1-2 sachets per day just made soiling worse (I felt like I was going to break down if I had to clean one more pair of pants soiled that heavily!). My best advice is to call the ERIC helpline. The phoneline is pretty busy, but if you’re able to keep calling, you’ll get through eventually. They really helped us and I felt much better after talking to them.

[Mummybecs in reply to Sammy4421]

Will they go against the Dr advice though?

[Sammy4421 in reply to Mummybecs]

They are just there to advise, but they may help you to understand more about what’s been going on with your son and may be able to suggest things to do to help him, even without medicine. It’s up to you! If you feel that your son is making progress following the schedule from the doctor, then that’s great! We unfortunately didn’t have greatly informed GPs, so the ERIC helpline and website really equipped me with the knowledge and confidence to push forward with getting my son on the right course of treatment for him.

[Mummybecs in reply to Sammy4421]

Thanks, we are away next week so going to stick with this until we are back then reassess x