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ERIC
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6 year old with chronic constipation. At my wits end.

My son has been suffering from chronic constipation for the last few years. He's waiting to be seen by the children's bowel nurse for the second time but should I be requesting a gastro referral. He's taking picolax sulphate and movicol but today has been his worst day ever. He's screaming every time he has a bowel movement but is only really passing overflow.

Even thinking of taking him to A&E tonight as he's in so much pain.

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Bless his heart ,have you tried children's glycerin suppositories? We hit a really bad patch just before Christmas because our daughter wasn't allowed any laxatives for a week whilst they did a bowel tracking X-ray. This also ended up with her becoming doubly incontinent because the stretched bowel was pressing on her bladder. The suppositories worked in spectacular fashion though and certainly gave relief . Good luck.ps you can buy them over the counter.

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Thank you. I might try them. Not sure how he'll cope with suppositries. I can hide his movicol in Apple juice but don't think he'll be up for the other end. How did you get referred for bowel tracking?

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We got referred for the second time,we've been going for six years,because she was having so many UTIs due to the soiling. We have now also seen a bladder and bowel nurse,she has been very helpful. The suppositories aren't as bad as they sound,they're quite soft and go in fairly easily if you wet them. After the first one she did them herself but she is a lot older,nearly ten.

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Thank you so much for replying so soon. I'm going to push for a referral when he sees the bowel nurse.

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It's heartbreaking to see isn't it?

No advice I'm afraid as battling to get my son sorted who is of a similar age.

Hope you get some help - fingers crossed

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It's kind of reassuring that there are other people in the same boat. Totally breaks your heart to see your child in so much pain. I hope you get help too.

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Thanks. Hope he isn't in too much pain.

I'm trying to get the School to have more knowledge and understanding in helping children like ours but it's a battle!

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I would go a and e if you feel it’s necessary. You know your child best. Have you done recent disimpaction with movicol gradually up to 12 sachets? If you haven’t might be worth starting it and see how he goes. You can combine that with the glycerin suppositories or the bisocodyl ones if you’ve got them prescribed. But if pain too bad then hospital

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We're keeping him off school today as he's still really crampy this morning. Will try increasing movicol and think a visit to walk in centre. Thank you

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Has he been diagnosed with encopresis?

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No. At the minute I think they're putting down to him not likening going to the toilet but it's gone on years. Saw GP today and got to double Movicol every day until he's up to 12 sachets. If he gets worse before, advised to go to a&e.

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Yeah a&e for an emend. It’s a fucking joke. Go to the drs and tell them you think he has encopresis, u can’t afford to constantly by pads/pull ups, new bedding, sheets, new pyjamas, underwear etc. Then you can contact the dwp to get disability living allowance for him. It’s classed as a disability so u are entitled to it. U will get money for all ur needs, what I said previously, pull ups etc etc

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I had to Google encopresis but it's exactly what he has. He's seeing the childrens bowel specialist nurse in a couple of weeks so I'm going to try and push for an actual diagnosis and help.

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If he’s screaming, he could be too heavily impacted despite the meds or even have a tear.

I would take him to a&e right away so they would have to disimpact before discharging him. And they have the meds to do it in a day or two, and checking with an X-ray that he’s clean.

The longer that poo sits inside him, the harder it gets, more damage to the nerves etc.

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He's not been screaming today so that's a good sign. If he gets worse again, We'll be heading to A&E though.

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We tried to disimpact with Movicol and i don’t think it works. We’ve tried other ways, pico prep and Klean Prep in hospital, that’s the way. Movicol is such a mess, takes so long, so much overflow and in the end you’re still not sure whether the poop is still stuck somewhere up in the colon.

How old is your boy?

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He's 6. It's coming away slowly and we're up to 6 sachets a day. It's definitely coming away though.

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Mine is 6 and a half and has had encopresis since he turned 4. For how long have you been dealing with this condition? First disimpaction?

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Oh sorry, just noticed you wrote he’s had this for a few years.

I am in New Zealand so it seems the sistem works a bit different. We first saw the MD, then got referred to a paediatrician in the public system who works at the kids hospital. He put us on Movicol and Senokot, make us disimpact at home with Movicol, another time with PicoPrep, then we started micro enemas in the mornings, he finally ordered an X-ray after 2 years, then disimpact in the hospital with Kleanprep. Now we are scheduled for a biopsy and Botox injection under anaesthetic.

What’s the process in UK for enco? I often don’t understand what people talk about, incontinence nurse etc.

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We've seen our local doctor several times. He's never gone for more than 2 days without soiling incidents but they happen pretty much every day. The Dr initially put it down to him just being a bit of a lazy boy but now he's nearly 7, they're taking it more seriously. He's seen the children's bowel.nurse once when he was 4 and we were given the usual advice about fluids and fibre and encouraging him to go to the toilet but he's never ever had 'normal' bowel function.

He's seeing the nurse again in a couple of weeks so we're going to push for a gastro referral and proper tests.

He's never been impacted this badly before and hope he never is again. It's heart breaking seeing your little one in so much pain.

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Here, the family doctor can only do so much. I had read online about encopresis and found the ‘sneaky poo’ manual where they said to give the child a stimulant in addition to laxatives. I asked the MD and she said she can’t prescribe a stimulant. Any change in the last few days?

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We'll definitely no longer impacted. Poor lad has been leaking so much and hopefully at the end of this episode. Our GP told us to stop the picolax when he's impacted as it causes more pain and he can't pass until it's no longer impacted.

We see the children's bowel nurse in just under 2 weeks so hopefully get referred to gastro to see what's actually happening with his bowels and nerves. Thank you for your support through this. This group has had an incredible impact on us. Good luck with your little one and hope you get some answers from biopsy x

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I hope things are improving, it's such an awful situation.... The only thing I would add is to ring the bowel nurse and beg/cry to get an earlier appointment - there might be a cancellation etc .. anything is worth a go x

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