My son was born 9 weeks early in May 1997. He was diagnosed with Hirschsprung’s Disease when he was 3 weeks old and had his first operation when he was 3 weeks and 3 days old. He was given a colostomy and mucus fistula, which were next to each other and made it difficult to fit the colostomy bags. I was told that he would need a pull-through operation when he was 3 months old and then everything would be fine.
When Callum was 3 months old, he only weighed 8lbs so the doctors decided to delay the pull-through until he weighed more. By January 1998 he weighed 14lbs and the doctor arranged for the pull-through. He went into hospital 2 days before the operation and was not able to have any food and could only drink water and Kleen-Prep (a bowel cleaning solution). He coped really well with this, despite being only 8 months old. The pull-through operation lasted nearly 4 hours and it was a relief when he was finally back from theatre.
Two days later, Callum started to vomit green bile during the night. A naso-gastric tube was re-inserted and the doctors ordered x-rays to be done the following day. The x-rays showed a blockage in the bowel and the next day Callum was operated on again because adhesions had formed in the bowel. One week later we went home.
Callum had check-ups every 3 months and was on a variety of medication to try and slow his bowel down and thicken the stool. He was having a bowel movement about 20 times a day and quite often became constipated. He was given daily enemas to try and alleviate the constipation. When he was 2 years old he had a further operation to investigate why he was becoming constipated. It was found that there was a small stricture in the bowel. The cut this stricture and the following day we came home.
Callum continued to have about 20 bowel movements a day. His bottom was extremely sore and the medication would not slow the bowel down. He was due to start Primary School in September 2001 and his bowel was still not under control. He had no idea when he needed to go or when he had been.
We were given two options from the doctor. Option one: Leave things as they were and see if they would improve naturally. Option two: For Callum to have another colostomy to give his bowel a chance to rest. After a lot of thought and discussion we decided a colostomy would be the best option for Callum.
He went into hospital on 29th August 2001 and had the colostomy on 31st August. Unfortunately, this was not straight forward and the stoma would not work. The doctors tried various methods to get the stoma to work, but it would not. On 19th September the doctors inserted a central line because they were struggling to find veins to use and then on the 21st September they gave Callum a loop colostomy. Thankfully, this stoma worked and we went home on 29th September.
Callum still had not started school because of him being in hospital and once we were home he had further problems with the stoma. It would retract and prolapse often and by the beginning of November he had further surgery to change the stoma from a loop stoma to an end stoma. This worked very well and a few weeks later Callum finally started school. He had a further operation in January to reverse the stoma that did not work.
Callum managed the stoma very well. We went on holidays abroad, school were great with him and staff were trained to be able to change the bag. The other pupils in his class were told Callum had a “poorly tummy” and had to wear a special bag. The pupils accepted this and never gave Callum any problems.