6-year old Emily has had problems with constipation from a young age. It was obvious to her family that things were not quite right, but despite this, it took visits to several doctors before she was diagnosed with constipation. Emily is now on an oral treatment called macrogol 3350 plus electrolytes. she takes a couple of times a week and feels much better. However, she still sometimes needs to increase her dose when she becomes constipated due to changes in routine such as school holidays. If this happens, treatment helps get her bowels back to normal.
Emily's mother talks to us about living with childhood constipation below.
When did you first think that Emily might have problems with her bowels?
Emily often complained of a tummy ache and was very bloated. Even though she was young, it was obvious that things were not right. She also started to develop a real fear of doing a poo. We noticed that her poos were either very large and solid or pebble like. She also experienced distressing symptoms such as leakage of liquid poo and wet wind.
This all occurred when she was 18 months old. In herself, Emily did not feel right. She became very tired and irritable.
When did you decide to visit your GP?
We went to a see our GP early on. The GP and health visitor we saw suggested that we try to increase the amount of fruit and vegetables in her diet. We found this advice difficult to follow because we already ate a lot of fibre as a family.
Some doctors we saw suggested that Emily might just be “playing up” and also thought that things would probably resolve themselves on their own. This was not the case at all.
We saw several doctors before Emily was finally diagnosed with constipation. At this point she was prescribed senna (which we added to her SMA milk powder) as well and lactulose together with Calpol for the pain.
How quickly were you referred to see a specialist at your hospital?
Emily was referred to The Portland Hospital in London through our own private health insurance. She underwent various tests which she found very difficult, and which were ultimately inconclusive.
We finally attended a specialist clinic at St Thomas’s Hospital. The specialist at St Thomas’s Hospital is working alongside our local hospital’s home care team to manage Emily’s condition.
The specialist nurse looking after Emily helped her by teaching her to relax on the toilet and addressing other behavioural issues. Emily was later referred to our local community specialist nurse to avoid the stress of repeated hospital stays in London. This worked out well and was less embarrassing and disruptive for the entire family.
Our community specialist nurse ‘clicked’ with Emily straight away and gave us lots of reassurance, help and advice.
What impact has constipation had on Emily?
Emily went from eating well to having no appetite until the constipation was treated. She became tearful, irritable, sluggish and tired. If she was away from home, she would only use the loo at her granny’s house and, as she got older, sometimes hid her soiled underclothes under her bed knowing she was withholding and that this was wrong.
Emily was always worried about the pain she may experience when she went to the toilet to do a poo and often found it hard to concentrate.
What impact has constipation had on Emily’s education?
The school have been very supportive; ensuring that water is available for her all day on her desk (also takes a bottle with her). Her pre-school nursery carers were also supportive, suggesting that we send her in pull-up nappies to make things easier (not normally allowed)
What impact has constipation had on family life?
It is very stressful having a child in fear of going to the toilet because of pain and dealing with soiled clothes time after time. You are constantly (24/7) keeping a diary of events to know if she can go to a party with some confidence, for example, and not have “an accident”.
Which drug treatments have you been given?
The GP prescribed lactulose, senna and Calpol© for the pain. However, she became very suspicious of medication when it was given to her on a spoon
We had to enlist the help of the community nurse to encourage Emily to take the medicine. Her bowel had become stretched due to the increase in volume as she became older and she passed large volumes of stools. Even enemas would not always be effective as she held her poo back.
She was then given a children's version of a macrogol based laxative (at age 4) which worked quickly and had an almost immediate effect. This medicine became known as a “special drink” given to her by the specialist community nurse. It was easy to administer in any situation (e.g. holidays, visiting relatives). It can easily be disguised in fruit squash drinks.
What have been the benefits of treatment?
It is pain-free and stress-free, easy to administer and can be dissolved in any drink. It also works fast. We have not experienced any side effects when using it.
Things are now 100% better. Now that Emily is older, we are able to explain the condition to her and the benefits of the medicines.
What does the future hold?
Emily no longer requires constant supervision when she takes part in activities at school and with friends, such as playing or in the swimming pool. This is a real weight off our minds.
She does not need to take a children's version of a macrogol based laxative every day now; we have reduced her dose to three times a week or when we notice a change in her bowel habits due to stress etc. She is very sensitive to changes in routine i.e. school holidays so knowing that there is something we can give her to restore her natural bowel rhythm is reassuring to us all.
*NOTE: Emily is not the child's real name and she is not shown in the photograph - It has been changed to protect her identity