Lola’s Story – a healthcare professionals’ and parents’ perspective 

Andrea Jordan, Lead Clinical Nurse Specialist: Paediatric Surgery, and Georgina Malakounides, Consultant Paediatric Surgeon, Addenbrookes Hospital, Cambridge 

Our Children’s Colorectal clinic was established by Ms Malakounides (Consultant Paediatric Surgeon) and myself at the end of 2018 to provide a dedicated clinic to children with congenital bowel conditions and for whom their prognosis necessitated specialist follow up.  Secondary to demand and also because Ms Malakounides and I have a particular interest in the care of children with constipation related issues, more recently the clinic was expanded to accept referrals of children with chronic, severe, constipation who have failed standard medical management. 

Lola was seen in our clinic in April 2021 following referral by her local paediatrician.  Constipation became an issue for Lola after the commencement of toilet training, and at the time of our assessment, was associated with continuous daytime soiling and only short-lived improvements with high dose disimpaction.  Some associated bladder symptoms were also being experienced. 

X-ray colonic transit study revealed a degree of megarectum with faecal loading.  Alongside fundamental key messages including ‘active toileting’ we discussed benefits of transanal irrigation (TAI) as part of Lola’s treatment to achieve more effective emptying and thus prevention of soiling and faecal accidents.  We felt this, in turn, may also benefit Lola’s bladder emptying.  We demonstrated the low volume Qufora IrriSedo MiniGo Flex irrigation technique; Lola engaged with this well and was willing to try it. 

As for all our children, Lola receives regular nurse specialist led telephone follow up.  Lola started to see benefits of TAI very soon after commencing her treatment.  As Lola has gained improved sensation to stool and independent effective emptying, we have commenced gradual weaning of frequency of TAI and laxative medication. 

When we introduce TAI to our families, we know that engagement by the child and a supportive family who are prepared to keep an open mind are keys to success.  We recognise too the need for regular contact by us, to support and advise on the patient’s journey.   Low volume TAI has been sufficient for Lola, as it is for the majority of our children, and as such is an invaluable tool in our treatment regimens. 

We caught up with Lola’s mum who said: 

“Lola has been using irrigation for about 16 months and it has been a really positive experience. Straight away there was a big reduction in the amount of soiling and that, along with her medication, has resulted in Lola having a much more ‘normal’ life.  

Lola’s problems with soiling and constipation started when we attempted potty training at around 2.5 years. It was very hard to get a diagnosis and difficult to get treatment as an actual problem until she was about 7. It was always something we were told she would just grow out of. Finally in April 2021 we got sent to the amazing team at Addenbrooke’s Hospital who adjusted her medication and introduced us to the Qufora IrriSedo MiniGo Flex irrigation system. Lola took to it straight away. It’s not painful or messy and it meant that even if she couldn’t do her usual ‘morning poo’ by herself she could still clear out which resulted in little or no accidental soiling during the day. Previously Lola would sometimes have to change 4/5 times a day! 

It’s had a huge impact on her confidence, especially at school where she no longer has to go to the adult’s toilet to clean up and get changed. She no longer has to wear incontinence pads in her underwear. I no longer have to throw away countless pairs of knickers or need to take a rucksack of clothes out with us if we go out for the day. 

She now enjoys swimming, play dates and sleepovers without having the worry that she’s had an accident she was unaware of. I also love the fact that it’s just water cleaning the body rather than relying on chemicals.  

We’ve recently been able to have a couple of days off the washouts a week and are now reducing the medication she’s taking. For the first time in 8 years we are finally seeing some light at the end of the tunnel.” 

Lola said: 

“I would recommend washouts because I had been like this for my whole life and using medicine for years and it made no difference but after doing washouts for a year I have been loads better.”