How Emily overcame poo withholding

Emily is now a happy, carefree 4 year old. But from the age of 2, she struggled with chronic constipation brought on by withholding her poo. Her mum Rachel shares their story in the hope that is helps other families... 

Emily is normally a happy, carefree, wild little person. She is fiercely independent and will only learn something if it’s on her terms. She has a fire in her belly which can’t be put out – which means she is very strong willed!

Time for potty training!

Emily decided on the first day of New Year 2020, "I don’t want to wear nappies anymore!". Having absolutely no concerns about her health, we were thought great, potty training – bring it on!

She did really well to start with. Mastering the art of weeing in a potty really quickly and passed a few poos – we thought woooo!… But number 2s we noticed were more difficult. We’d always been told that comes later with some kids, so we never thought about it for too long just thought, ah we’d wait and see.

A poo problem creeps in

Before lockdown Emily was at nursery 4 days a week and they had a toilet training plan in place. We were really open about going to the loo at home - letting her know it’s not a scary thing, just a normal part of life. Initially, she did a couple of poos which we celebrated. But then she got into a stretch of doing it at night. We thought we would wait to see if it worked itself out, but then Covid hit.

Accidents during lockdown...

During lockdown we were full time parenting, full time working. Even though we were keyworkers, we couldn’t get her into nursery for the first 2 months. We were working from home which set her back a bit. Like everybody we were going crazy. She suddenly started having more accidents.

We thought she’s only a few months into potty training, this is normal we’re not worried about it. this is part of how it is. We contacted our health visitor who was brilliant. We were given some ERIC information including Poo goes to Pooland story which we read to Emily.

Night time soiling and withholding

By the summer however, Emily was getting increasingly distressed. She was still soiling at night and would refuse to go to the toilet at all. She would hold everything in crossing her legs and screaming.

It was torture, if I’m honest. Quite often she would wake up, be ok for half an hour and then she would need the loo and then that was it. The rest of the day was on/off the potty. She would cross her legs and go into a funny stance, and you could see she was in so much pain and not wanting to address it or talk about it.

Pain and upset

Emily was doubled up in pain some days. She was so terrified, and we didn’t know why. It would get to 6pm, and she would be so grumpy, so upset, she wouldn’t be communicating well, and she was really sad.

We got so used to it that every day was really similar. Nursery tried to encourage her, but she still had multiple issues a day where she would pass poo in her pants. She might say she needed it, nursery would take her, then nothing would happen, and she would get upset.

Back and forth with GP

By this point, Emily was 3 and getting nappy rash. She would cry and call it spicy bum.
We had a telephone appointment with our GP. They suggested trying her on lactulose. She had always been a rubbish drinker, so we tried to work on that too.

At this point we thought we failed if I’m honest. She was at nursery, we kept taking her to the GP and we thought this must be how it is. We blanked it out in some ways to cope, because we weren’t coping.

Reaching crisis point

Which is how we got to the place we did. She didn’t go to the toilet for 4 days; she spent an hour on the toilet after nursery in tears because she was in so much pain. She wouldn’t let a doctor go near her or examine her tummy.

It felt like we were in crisis, and no one could see it. We thought we were really crap parents.
It was heart-breaking to see her so upset and not know what we could do. But in other ways we got so used to it we got numb to it.

Finally getting help

Eventually we broke down with an out of hours GP who agreed to speak to the paediatric team. From that point, everything changed. The paediatrician agreed something was wrong. and asked us to come in. Only one person could go in and I knew I would break down, so Andrew went in whilst I sat on the bench outside crying.

As a mum we take it so personally, we take it to heart that we created this being and yet we are not looking after her properly. And that is what really hurt. Have we done something wrong for 4 years? Are we to blame? Up till that point we hadn’t realised how distressed Emily had been. She had masked it and coped so well.

Using macrogol laxatives to disimpact

We came out of hospital with a big plan of using macrogol laxatives to do a disimpaction. Reading through all the different stages of medication we thought ‘this is huge’, this isn’t just a little thing she is chronically constipated, that is the problem. If someone had been able to assess her a year ago, they could have told us that straight away a year ago. But they couldn’t because of COVID.

The disimpaction was a bit of work, we had to use a lot of bribery! But from that point, everything changed. Within 3 or 4 days there was no wailing to go on the toilet. She went happily to go on the toilet. She was so much happier. She knew exactly what she needed to go and managed it herself, even going to nursery whilst on disimpaction.

Help and encouragement from ERIC

We have had relapses, but we were confident in knowing what we were doing. And part of that is because of ERIC. Fiona on the helpline said "Tell me about your day, tell me where you started, tell me what your next steps are". It was amazing to tell her about the difference in our family life.

End of a nightmare

It was such a relief to see the change in Emily. Every day wasn’t a nightmare anymore. In the past, we would dread picking her up from nursery because we would have to hear of her issues, if she hadn’t done a poo which meant we KNEW we would have to deal with a massive one tonight. And then the ongoing effect of trying to make her drink.

Because we’d had the support from ERIC and paediatrics it meant things were recognised differently to how they were before. It made a huge difference. Emily's nursery backed us on the medicine. They let her have it during nursery and helped her drink it every day. Such a little thing that kept her regular and smoothed everything over. She learnt drinking during the day as a routine.

What life is like now

Now we can go out. We used to dread going out for daytrips because she would be in so much pain. Or she would bottle it up during the day and then it all came out during the night when her emotional outburst would be pure terror. She wouldn’t go out, wouldn’t go in the bath, wouldn’t even let me touch or brush her hair. If your stomach hurts, everything hurts. Now we can brush her hair and she is fine.

Once she was on Movicol, nursery noticed a difference in her confidence going to the loo. She didn’t need help and she happily talked about poo. We had so many celebrations about poo!

At nursery, they were so supportive of it and helped her feel more at peace with it. it is amazing, the difference now. Her demeanour as a child – she has gone back to where she was when she was 2.

The difference in Emily

When she was in pain her focus was on her stomach, rather than playing or concentrating. She would be fidgety and then it would be taken over by anxiety and then sadness. Whereas now, she will make up games with imagination, run around carefree and go to the loo unbothered. No more sitting in the corner cross-legged. It’s amazing.

Whilst we had information from the paediatric team, it was Fiona at ERIC who was instrumental in helping us think about how we do that properly. She talked us through how other families handled it. Being able to give that information to my husband and thinking about to manage it on a daily basis made it feel much more manageable.

ERIC has taken the shame and stigma out of it for us. It doesn’t feel like an awkward thing to talk about. And it’s not parents fault when things are difficult. There are so many other families going through the same thing.

Looking back..

We feel we should have pushed for more reviews and more action. We feel let down in ourselves that we didn’t push that.

Right now, we feel so relieved we are not putting blame on ourselves. It isn’t that we failed her, it’s her digestive system and its nothing we can pinpoint.

We don’t panic anymore about her poo. We can feel more relaxed and able to enjoy the day.

My advice to other parents

Speak up sooner than you think you need to. 3 months into potty training, we were so convinced ‘this is normal’. I encourage parents to go back your Health Visitor if you have that good relationship. Someone to help you advocate and be that support system.