Lily’s story

Lily* struggled with poo accidents and tummy pain due to chronic constipation, that left her stressed and missing out on childhood experiences. Transanal irrigation (TAI) treatment turned things around – and ERIC’s resources helped on the journey.

Story written by Lily, aged 9. Edited by ERIC. *Names have been changed.

I am Lily* and I am nine years old. I have had chronic constipation since I was four. It has been difficult, although there is a treatment that is now helping.

I have had lots of tummy aches and hard times on the toilet for the past few years. Lots of poo accidents have been happening too, at home and at school. That was a bit stressful, and it got really annoying because I kept missing lessons.

I have had macrogol laxatives every morning for about four years. It doesn't taste nice, so we add some squash to make it taste better. It still doesn't taste that good, but I get on with it.

Having a poo problem is difficult and it can make me feel sad and anxious. I have had a mental health lady from another organisation come to talk to me for a few weeks. We were working on building up my confidence to go to the toilet at school.

I know that it's important to go to the toilet a few times a day so that the poo doesn't get stuck in a traffic jam. Sometimes I used to not want to go to the toilet at school, as I didn't want to find an accident in my pants.

How I decided to use transanal irrigation (TAI)

I love pasta and bread, but the doctors think that gluten might be causing some poo traffic jams. I'm staying off gluten for a while to see if it helps with the tummy aches. There are still a lot of accidents though, and the doctors suggested that TAI might help.

[TAI stands for Transanal Irrigation. It’s also known as a rectal washout or a bowel washout. It means putting warm water into your bottom with a special tube that your doctor or nurse can prescribe. The water goes in and helps the poo to come out into the toilet when you take the tube out.]

When this was suggested to me, I didn't think that that was something that could happen because I had never known or heard of it before.

When the doctor explained it to me, I felt very scared and like there was no way I was ever going to do that. My mum was upset too.

A few weeks went by before I went on a short holiday. In the time that I was there, I had a lot of tummy aches, accidents and I really didn't feel well. That wasn't very nice, especially because it was a holiday!

At a meal out at an Italian restaurant I had some pasta, and I had to leave more than half of it as I was feeling that unwell - and remember I really love pasta! So right there and then, I decided that I was going to do the TAI treatment.

Super brave

A few weeks later, a nurse came to my house. She showed me two different options for equipment, and she showed me how to use both of them. The first one looked simpler, although both my parents liked the second one better. I didn't really mind but I chose the second one as well.

It made me feel a bit better being able to see and feel what the equipment was like, but it gave me the tingles inside all the same.

A few days later we had our own equipment delivered, and the nurse came round to have a test try with us. I was really nervous at first and it felt really weird when it went inside me. It was actually quite quick, and it didn't hurt at all. It was a lot better than I’d thought! Plus, I got to have a day off school as well!

The nurse was very supportive and kind, which I liked a lot. She told me that if I wanted her to stop at any point, I could just say stop and she would. Afterwards both mummy and the nurse said that I had been super brave, and they were very proud of me.

How TAI has helped my constipation

In the first few weeks of using TAI, I went to camp and didn't have to use it while I was there. Some days I felt quite good about using it, some days I felt okay, but some days I just really didn’t want to do it. Mummy got me some new books that I could read whilst I was on the toilet, so that's something I liked doing for the 20 minutes on the toilet afterwards. The nurses rang my mum every week to check how it was going.

Now, 6 months later, I have been doing really well at the TAI treatment. I can do the whole process without any help whatsoever. I am really glad about how far I've managed to get doing this.

I was worried about not being able to go to sleepovers at my family’s houses but now I can just take it with me.

The other week I went to my aunty's house for two nights and I managed to do the TAI without my aunty having to do anything. We have been keeping a diary of everything that is going on and so far, it's looking quite good. Everyone that knows about this, including my friends, are really proud of me as I've been really brave.

ERIC’s website helped me

We were recommended ERIC through the constipation clinic. On the website, we read some information and we watched some of the videos. It helped me to understand things better – like how ERIC described constipation as a ‘poo traffic jam’ – and it helped us to talk about things more easily.

When we were on holiday, and I was upset because I was missing out on swimming as I’d had to get cleaned up, we came across Willow’s story – another girl who used TAI. It helped me because I knew that there were other people who had to go through the same thing. I felt like I wasn’t on my own.

We didn’t need to worry about TAI

My hopes for the future would be to stop having accidents and concentrate more on the things that are fun or important, rather than worrying about my problems. I think if we carry on with this treatment for a while longer, then I won't need it anymore. Soon we will start reducing the number of times a week that we do it and see if anything starts improving.

I hope everyone reading this will be inspired and encouraged to be braver in times like this. At first, me and my mum were upset when we thought I’d need to use TAI. But we didn’t need to be worried! That’s why I’m sharing my story now. I hope that if there are any other children who need to do this, they will feel better having read my story.

*Names have been changed.