When Jack was four weeks old, Steve and I took him to our doctor who, in turn, sent us to a paediatrician; he thought that it was reflux and put Jack on Prepulsid, Zantac and Mylanta. But things did not get better. When he was nine months old, we stopped the Prepulsid, Zantac and Mylanta and that’s when four to five days without a poo stretched to ten days. As instructed by the doctor, we gave Jack enemas three to four times a week to keep his bowel clean. That was okay for a while but he was still a baby and he didn’t really know what was going on.

He was 10 months when he first went into the Royal Children’s Hospital in Melbourne. By the time he was 12 months old we were asked to make alternative childcare arrangements, as his Day Care couldn’t cope with his crying which was upsetting the other children! So we tried Family Day Care for the two days a week I was at work. Jack was still a very unhappy child and by Christmas 1998 he would not eat much and it would be as long as 14 days between motions. By now the laxatives and enemas were becoming less effective. It became a battle to change Jack’s nappy as he thought that we were going to give him ‘medicine’ (the enema). He was always trying so hard to do a poo. He would sit on the floor with his knees bent up to his chest and his left hand over his mouth because he would vomit. When Jack did ‘go’, it would be in volume and he would also vomit! Thank God for floorboards.

All the doctors we went to see would tell us it was just normal constipation, that it was becoming a habit and that we should continue with the laxatives and enemas. I remember that week I give Jack 60mls of Actilax and six squares of chocolate Laxettes and still he did not go! We ended up again at the Royal Children’s. This went on and on until a friend told me about a clinic at the Royal Children’s where she took her boys to deal with a problem they were having with soiling. It was March 1999 and I decided to make an appointment.

We told the doctor what Jack had been going through. He had his first x-ray that showed he was very full. Jack’s fluid intake was very good and he was on a very high fibre diet (later when I took Jack to a dietician, we were told that a low fibre diet would be better, which we found to be true). Jack still went 2 to 3 weeks with out a motion but his belly did not get quite as big so he was not in so much pain. After about six weeks, Dr Murphy told us that Jack had more than just constipation and referred us to Professor John Hutson at the Royal Children’s Hospital.

Finally we knew what Jack’s problem was, and we had a name for it. It was very sad but at least we understood what was happening and we could deal with it better. We did weekly large bowel washouts for about a year. I did it for a while but I got so upset one day when I started to realise Jack began to hate me going anywhere near him. My husband Steve took over, with the help of a very dear friend who is a nurse, but it did not get any better.

He now went four weeks without a movement and the bowel washouts were not working, I kept a diary detailing things such as laxatives, enema solution, diet, fluid intake, movements and amount. I also diarised his behaviour patterns - his behaviour was very bad and deteriorated during ‘build up’ but, when he was not so ‘full’, he was ‘our boy’ again. During all this time, our daughter Kate was dealing with the same tension and pressure that we all felt.