My daughter Izzy is an active seven-year-old who loves gymnastics and swimming. Izzy has had chronic constipation since the age of two. At four she was also diagnosed with an enlarged bladder – bigger than an adults’! She’s also hypermobile.

We are part of an active family of four, plus a gorgeous beagle called Buzz who has helped Izzy through her bad times. Amazing what a doggie cuddle can do!!

Getting out and about is hard

Izzy’s conditions have made it hard for outings. Izzy’s dad works shifts, so it was normally me on my own, meaning I had to drop everything to run to the toilet with her or go and locate a toilet suitable to change her in.

We used to have to keep an eye out wherever we went for the toilets. Long journeys were a no-no unless we put Izzy in pull-ups. She is still in pull-ups at night, which she doesn’t like as her four-year-old sister was dry as soon as she potty trained at two and a half. We’ve tried many times to get her dry in the night but when sharing a bedroom and bunk beds it’s hard on everyone being woken up.

Izzy was unable to join in any club unless I could attend in case she needed changing. She also wasn’t able to go to friends’ parties or even go round for tea as I didn’t want to have to put it on another parent to help change my child if she had an accident.

Fighting for better care for Izzy

Izzy’s health visitor tried getting her help after a couple of years with an incontinence service, but due to our postcode we were refused! It took years for Izzy to be referred to hospital to see a consultant and even then that took months as the doctor referred her to the wrong department. I have researched ways to help until I am blue in the face, but haven’t found anything that helps her.

When Izzy was five I complained to the doctors, consultant and school nurse about the care she received and ended up admitting Izzy to a ward to help break the cycle we were in. Luckily the consultant saw how much I was struggling when I broke down in her room during a conversation. Five days in hospital and she was well and truly cleared out, we had the best summer of no accidents! But she went back to school and, bam! back to her old ways.

Help at school

Izzy’s school in reception year were fab. She had easy access to a toilet and a teaching assistant knew all of her ‘signs’ for needing to go to the loo. Unfortunately, trying to speak to anyone about her issues at school now is hard, even the head teacher refused to talk to me!

I sent in ERICs Right to Go leaflet about managing continence problems in school, but I don’t think it was read! As soon as Izzy moved years, the problems reoccurred. It was worse in year two when the boys and girls share toilets. A boy walked in on Izzy changing which made her uncomfortable, yet the teacher asked why she didn’t get changed in a cubical! I would love for schools to acknowledge bowel and bladder problems properly rather than believing it isn’t happening and they can’t help!

We're not the only family going through this

I stumbled across ERIC while searching online for something to help. It was nice to be able to look through ERIC’s forum pages and realise I wasn’t on my own – lots of parents were going through the same thing.

Since getting help from ERIC, I am not as worried when going out or as embarrassed when Izzy has an accident outside the home. I am also always checking back onto ERIC’s website for new information or to see if anyone has any ideas to help when Izzy gets bad.

To other families in a similar situation I would say keep going, you are not the only ones in this situation. Push the medical professionals to get the correct help for your child even if it is a high dose of meds, and push school for help to keep your child confident and happy.

Emma ran the Great South Run for ERIC on 22 October 2016. 

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