Bowel incontinence

[greenseahorse]

My daughter is 9 years old & been diagnosed coeliac for 3 years now. She's always suffered on & off with constipation before & after diagnosis even following a strict gluten free diet. She started having severe tummy aches in October last year & after several visits to gp & hospital was finally diagnosed as chronic constipation with xrays. She was put on a high dose of laxatives, sodium picosufate & senokot in November & in December she became incontinent. To date now she still has daily soiling especially in the evening. She's had 5 sessions of bowel clean prep & now on 7 laxatives a day but accidents have not gone away. We have been told she may have to have at home daily bowel irrigation if doesn't improve which worries me a lot. Can anyone please offer any advice or help as this is taking over our lives & we are not being given a clear diagnosis. Thanks.

[Alicass]

Have you disimpacted with Movicol or similar? Do you have a toilet plan in place so she regularly sits on the toilet?

[greenseahorse in reply to Alicass]

Yes we have done the whole disimpaction process. She ended up on 12 laxido 30mls sodium picosulfate & 15ml senokot daily. This was slowly reduced with the guidance of a paediatric nurse but then the incontinence started. She sits on the toilet at various times of the day but still the accidents happen especially at night when all she wants to do is go to bed.

[Robinia in reply to greenseahorse]

My son is in the same boat- he’s been bowel incontinent for 2.5 years. He’s now 11. He’s been prescribed trans anal irrigation for home use which unfortunately isn’t working well. He’s on a waiting list to have a manual evacuation and then try irrigation in hospital after that to see if it will work once he’s been emptied. We did a disimpaction half term which did get a fair bit out but I can’t keep him on 12 sachets once he’s back to school- it causes foul smelling wind and bloating- he’s managing 6 a day at the mo. I will do another disimpaction Easter. There are kids who meds don’t work well for (I know other ones) and it’s then usually irrigation and if that doesn’t work surgery (his friend has had an ACE done and it’s changed his life). You need to be under a paediatric surgeon to get the balloon irrigation. Don’t be put off by the irrigation. In the short window where it worked well he didn’t mind doing it, he seemed to like it. Also they might prescribe a smaller system - there is a cone you can use as well but that doesn’t work on my son. The Peristeen website has good videos about products and Eric do a really good leaflet for kids with complex bowels about using aids to help with going for a poo. I’ve found the psychological aspect as important as the physical side, if not more. My son has a psychologist and an OT through the NHS. Helps with coping with the condition. My son wears pads and showers loads- it’s actually a bit easier now he’s 11. I hope you are having good support from health professionals.

[greenseahorse in reply to Robinia]

Thanks so much 4 your reply its good to know we r not alone as it's really getting us all down. She is under a paediatric consultant who has talked about the peristeen system if we can't get the laxatives right. Honestly I don't think the laxatives work effectively 4 her anymore. She is currently on 9 & can do a small amount of pooh in the morning & then starts having accidents anytime from 3pm & these can continue till about 10pm.

[Robinia in reply to greenseahorse]

I tried for ages to get my son irrigation- now we’ve had it nearly a year, we are still struggling to get it to work well but without it he has no chance at all of getting continent.

Feel free to keep in touch (you can msg me privately if you want)

It deffo helps to meet others in similar position.

It’s helped my son loads to meet other kids with same problem and feel less alone.

Hopefully you can find other kids locally who also use aids to help them go xx

[greenseahorse]

She already wears adult nappies in bed as also never been dry. We were addressing this before the soiling started and was on desmopressin for a while with good results.

[Esther_wing]

I would stop the laxatives with immediate effect ... control the condition and pain with diet instead