Incontinence help!

[Mehew98]

Hello,

My daughter has suffered with chronic constipation since birth. Being a ‘lock down baby’ she didn’t have the usual checks and was born passing unusually large, painful stools. We were always told that this would ease when she started weaning and introducing fibre.

Unfortunately, this was not the case. With hundreds of visits to A&E for incredibly painful constipation she was prescribed Movicol and has been on that for 4 years. It has proved unsuccessful, we disimpacted many times; introduced senna; bisacodyl supositories; enemas (which have now scarred her!) and sodium picosulfate.

We could never find the perfect balance and her constipation suddenly resulted in just incontinence. Both bladder and bowel are totally immobile, she feels she has no sensation and is having accidents hourly. We were finally (after 4 years of battling consultants at the local hospital) transferred to GOSH.

She underwent colonic manometry studies, anal rectal manometry studies and biopsies. Her manometry study caused question and thus prompted further biopsies (currently awaiting Hirschsprung’s results) and indicated that she has left colonic dysmotility.

We have been put on a regime of 1 Movicol sachet a day and 1 Bisacodyl tablet a day. She is having accidents 16 times minimum a day. The constant liquid stool has been happening for as long as we can remember and she hasn’t passed a ‘typical’ stool since September 2022.

We are at a loss as to what to do! We are now not dealing with constipation but now just chronic bowel incontinence. Our nearly 6 year old daughter has had to go back into pull up nappies and is mortified by this. It is impacting our whole families mental health and we just want to make it better for her.

Is this normal practice? How long can we expect this to go in for? What more can be done?

[Shazabeliski1]

Omg we are in the same predicament to my little girl. All we ever get told is de-compaction 10 ml senokot and 8 sachets a day then to reduce to 6 a day. We struggle to get her to drink that much let alone 8 sachets. Again like your little girl she has no control over her bowels or her wees and wears pull ups for school. Now in Yr 1.They want us to encourage her to use the toilet but it's a constant struggle getting her on it when all she does is jump up and down and say 'wait, I need a poo'. This is a constant battle for us too . I just wish there was more that they could do for her.

Sometimes the professionals make us feel like we are not doing it right. And want us to complete more daily charts and sweetcorn tests ( which by the way we never see pass through).

I just worry that she'll be doubly incontinent for the rest of her life as despite what we do the poos are constantly runny.

It's so sad for these children and I believe more should be done to help them.

[Mehew98 in reply to Shazabeliski1]

Oh my goodness! I cannot believe how similar our situations are. My daughter is back in pull ups too and is absolutely traumatised by it, she is so worried that other children will notice and recognise!

[JenniferSee]

This is so terrible! I feel for you and your daughter! Doctors don’t have any recommendations?

[ERIC-Charity Partner]

Useful resources: eric.org.uk/childrens-conti... and eric.org.uk/poo-ladder/