Willow’s story of using Transanal irrigation (TAI)

As soon as she went I wanted to try it so mum helped me set up the first one to make sure I was doing it right. It is a bit weird putting something up your bottom, but the cone is clever because you just run it under water and it gets slippery so it’s easy to put in. It doesn’t hurt at all.

Then you squeeze all the water from the bottle out and through the tubes and into your bottom. The first one was quite a weird feeling and I did a poo straight away along with the water. I could feel I needed a poo.

Sometimes I can’t feel when I need a poo and that’s when accidents happen. It is actually faster for me to use this than to do a poo, as normally I sit there for ages until it comes. At the moment I am using this once a day.

Success!

I actually felt I needed a poo one afternoon and I did one without needing the kit and the nurse says maybe in 6 months I might have regained enough tone and sensation to not need to be on any laxatives or need this treatment anymore.

I am slowly coming off (macrogol) laxatives which is good because I don’t like the taste of them (mum puts it in the fridge and adds caramel drops to make them taste better).

Once I got over the awkwardness of the idea of this treatment, I really like it. It’s great because I know I won’t have an accident for a good while after using it. When I use it I usually do a poo when I use it rather than sitting for ages and nothing happening.

I am now also starting to feel when I need a poo (I couldn’t before) so I go when I feel I need to. I feel much better too. We had to do a disimpaction before we started using it and that wasn’t much fun, but I feel much bouncier now!

Feeling better

It’s also funny because after the disimpaction and starting with this I now feel hungry all the time. I think it’s because now I have room in my tummy! Mum says I seem much cheerier and the daily tummy aches have stopped.

I only want my mum to know about this treatment, my brothers can’t know and nobody at school.

Not sure yet how we will manage the school residential as I am NOT taking the kit with me and I can’t really poo anywhere except at home, but mum says it won’t be good to hold onto my poo for a week, but maybe I will be all sorted by then. I do hope so!

Trial and error

I have had a couple of tiny accidents since using the system when I waited a bit long between treatments (every 24 hours at least is best for me).

Sometimes I wasn’t always getting a poo after doing the treatment so we have just swapped to a system with a bit more water to see if this helps me but this one is a bit more fiddly to use so I am swapping between them while I work out which one is best for me.

If other kids are thinking about trying this treatment I would say - give it a go, it’s only water and you might not need medicine too. It won’t be forever.

I’m hoping this is the thing that cures me of my poo problems forever.

Mum says I still need to remember to drink (I’m not good at that!) and get a healthy balanced diet and exercise etc. Boring. I might still need medicines sometimes, but hopefully I can get to the point of no more poo accidents so I can start secondary school without any worries on that front.

Fingers Crossed!

Willows’ mum’s story

When Transanal irrigation (TAI) was mentioned as a possible treatment pathway for Willow I really wasn’t sure, it seemed so intimate and invasive and I thought she would never go for it. Obviously it’s not something you could ever force her into, and given taking her medication was at times a daily battle then I really felt it was a very long shot.

Reluctance at first

Her reaction when I first mentioned the possibility was a very clear NO so I thought that would be it. Then we had a really bad run of accidents, and I am in regular contact with her continence nurse (who is INCREDIBLE) who raised the possibility again. She recommended I not google it as there are many quite alarming versions on the internet (something I ignored so I did scare myself about the treatment too!). The nurse offered to do a home visit with the kit so we could see it and have a play with it and demystify it for us and then if Willow was interested, she could try it.

Facing our fears

At this point Willow said she wanted to see it and was open to trying it.  While waiting for this appointment I was chatting with friends and family about it as an option they were also somewhat judgmental about this treatment as an option. They felt it seems quite a hardcore approach for “only constipation”, but then they haven’t lived with the ten years of family life being dominated by poo issues like we have.

This treatment offers a chance to finally sort this issue for good, and as it turned out was nowhere near as ‘scary or difficult’ as we imagined it might be.

Help from an amazing nurse

Luckily Willow gets on really well with her nurse and is always happy to see her, so when she came over to show us the kit Willow was excited and interested.

So much of getting Willow on board with this process has been about her relationship with her nurse and me and us planting a seed but it being totally on her own terms. (Willow has recently been diagnosed with autism and ADHD which also makes sense for the enduring poo issues).

Once she saw the kit and it wasn’t a scary unknown any more, she was unexpectedly very happy to try it as soon as the nurse had gone.

The kit was much smaller and less scary in real life to my googling! It’s really well designed with a self-lubricating cone and the bag it comes with doubles as a waste bag and even has a sticker so you can attach it to the sink to put the tubing waste in and seal the bag and dispose of it.

The downside is the level of plastic waste (the cone and tube are single use only, the bottle you use for a month), but hopefully she won’t need to be on it for too long. We get a month’s supply at a time and just have to call up for more.

A new routine

I helped her with the first set up and talked her through it, but she did it all herself. Once I knew she could do it herself, I waited outside the bathroom to check she was okay.

Now Willow doesn’t like that and prefers for people to be far away from the bathroom in case they hear anything. Unfortunately the treatment can cause some brief diarrhoea style sound effects as the water comes out again with the poo, but we pop some music on and make sure her dad and brothers are downstairs and so far it has been absolutely fine.

Willow was even happy to do the treatment at her grandma’s when we went to stay for a few days, which was a relief.

Willow has taken to TAI like an absolute duck to water. It genuinely does feel like a game changer for us as a family. The relief in knowing she unlikely to have an accident within 24 hours of the last treatment (and soon we don’t need to remember daily medicine) is immense.

She is so much happier doing the treatment than she is about taking her medicine. The fact she immediately does her TAI with no argument speaks volumes about how good she finds the treatment for her.

We are still trying to work out best kit and water volume for her but she is fine about the changes, and we are getting excellent support from the Bladder and Bowel Service (although sadly our amazing original nurse has now moved to ERIC - they are very lucky to have her!).

Before, we would have battles to get her to have toilet time or take her medicine. She also just seems really relaxed and happy at the moment and feels like it has helped us turn a massive corner for her.

She is understandably very private about this (Willow is not her real name!) and I do hope she won’t need to do this for too long, but knowing she is very unlikely to have an accident for the next 24 hours means the transition to secondary school will hopefully be much less anxiety inducing.

She is already at the stage where a known poo accident would be ‘social death’ (luckily, she has somehow managed to never have an obvious one at school).

Getting back on track with poo

Timewisec, TAI is a much faster process than I expected. I had been worrying about how we were going to manage a much earlier start for secondary school when she also needs to fit in a morning toilet sit.

Now I don’t need to worry about that because if she is still using TAI by then it’s all done in about 5 mins, or hopefully in time she will have a regular and efficient bowel habit.

Laxatives have always been a bit of a nightmare to get the balance right and if we accidentally missed a dose, it would cause problems days later, or accidentally up the dose thinking she is constipated only to accidentally cause diarrhoea.

What I love about this treatment is it's just water, nothing else and its effect is immediate. Honestly if your child is experiencing enduring poo issues, don’t dismiss this treatment at the outset because of worries about the nature of the treatment. It really could be just the thing your child (and family needs) to get back on track with their poo!

Good luck!

More help and support

To find out more specialist interventions for treating chronic constipation take a look at ERIC's Poo Ladder.