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Paul* is a five-year old twin boy who has suffered from constipation since the age of two. His twin brother has never suffered from the problem.
Paul’s story is told by his mum
When did you first notice signs of constipation and what were the symptoms?
When Paul first came out of nappies at about 18 months to 2 years old. We found that he would only poo when he had his nappy on and liked to go somewhere quiet for this. As a result, we tried giving his nappies back to encourage him to poo, but then decided that this might not be such a good idea. My husband and I even tried putting the potty in the quiet places he used to go to poo with the nappy on e.g. behind the curtains but this didn’t work either. We noticed a bit of soiling from time to time but not much.
Paul started to hold his poo in and put off going to the toilet. We tried everything but he went days without having a poo. He would get hungry but was not really eating properly as had lost his appetite and would pick at his food. He would usually say that he felt full up when he had really hardly eaten anything.
We noticed that Paul became moody, angry and irritable, often complained of tummy aches. I used to rub his tummy, which was very swollen, to help him feel better.
I think that he didn’t like the fact that poo was brown. We explained to him that everyone poos and in fact our Community Paediatric Nurse gave us a book called ‘everybody poos’, which was very useful.
When did you decide to visit your GP?
We went to see our GP fairly early on but he wasn’t that sympathetic or rather he seemed to treat rather than address the cause of the problem. The GP gave Paul Senna, lactulose and suppositories to give at home. Upon examination, the GP found a small tear in Paul’s anus and thought this may have been why he had put off pooing. It might also have been that he didn’t want to miss anything by going to the loo.
The suppositories that were prescribed were difficult to administer and then failed to work which was heartbreaking for us as a family.
How quickly were you referred to see a specialist at your hospital?
We were not referred by the GP, but one day, after Paul had not done a poo for about two weeks, had a very swollen belly and was really uncomfortable, we took him to the Accident and Emergency Department at our local hospital. In hospital, he was given an enema which was immensely traumatic for him and for us but it did clear him out. We were then referred to the home care team and were placed under the care of a Community Paediatric Nurse, who has been brilliant.
When was your son diagnosed with constipation?
When he was 2-3 years old.
What impact has constipation had on Paul and the rest of the family?
He was moody, angry and irritable, as well as not eating and picking at his food. It also affected the rest of the family. It was difficult to deal with because one twin was fine and it is a lot of work to look after both twins especially with one of them being constipated.
We were constantly talking or worrying about whether or not he had pooed and sometimes this started disagreements between us. I sometimes found myself comparing the twins to each other and wondering why one was ok and one wasn’t.
Really, we just didn’t know what to do but we were so worried about him.
It has been an immensely stressful time for us. We felt that we were on our own and didn’t know where to go for help or who to talk to. It is not something that is discussed much – as it is a bit of a taboo subject.
I just didn’t know what the right thing to do was and used to discuss it at great length with my husband. We didn’t know what the best approach was to making Paul feel better.
What lifestyle changes have you adopted to tackle the problem?
None really. The twins always had vegetables each day and fruit and drinks. They think that branflakes are cornflakes and eat them every day for breakfast. As a family, we also eat brown bread.
We have encouraged him to drink more water and he takes a large bottle to school with him every morning. The teacher knows he is on treatment for constipation and encourages him to drink throughout the day. He shows me the bottle at the end of the day so I know how much water he has drunk.
Which drug treatments has Paul been prescribed?
The GP prescribed lactulose 30 ml (three times a day) and senna at night. He was also given three suppositories. At hospital Paul was given an enema. At home, under the care of the Community Paediatric Nurse, Paul was given two more enemas and senna.
It was so traumatic giving him the enemas and suppositories. We had to hold him down and he would scream and scream and it was so upsetting.
The enema was very traumatic and upsetting but it did work in that it cleared him out. The suppositories didn’t work that well. Although the senna and lactulose did work, I felt as if I was constantly giving him drugs, and that he might have pooed anyway in the end, without them. After a while, Paul seemed to become ‘immune’ to the senna and lactulose and they started to work less well.
Our Community Paediatric Nurse then suggested we try MOVICOL Paediatric Plain (macrogol 3350 and electrolytes) - two sachets a day - which is now down to one sachet every other day. This was really good – it made his poos softer, was easy to give to him and there were no side-effects. It’s so simple, we just give one dose in his tea in the morning and that’s it. He is now in a routine and likes to go to the toilet before his bath in the evenings and has even gone at school. He never had a routine before.
Paul is a different person, much happier in himself. We feel happier as a family and more relaxed because things are simpler. It is a relief not have to worry all the time about whether he has pooed or not. I used to have to go into school with the midday dose of lactulose. Now it is simple, just one dose in his tea in the morning. In fact, now he is down to one sachet every other day.
It is wonderful not to have to think and worry about Paul all the time. I know that Paul will poo, although I realise that he will have to still take this treatment for a while. Sometimes under the pretext of helping him wipe his bottom I check his type of poo to see if it is soft enough, in case I need to increase the dose. We still sometimes text each other to say he has pooed if the other is out at work, so we haven’t completely forgotten about it.
Constipation is so much more common than you think, but you feel as if you are on your own. We feel as if have come through the other side now. Paul is so much happier and so are we.
*NOTE: Paul is not the child's real name - it has been changed to protect his identity
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