Douglas Watson

Douglas was born in Dunedin, New Zealand, on December 2 1985, after a relatively uneventful pregnancy and labour. He was our second child, with a three year old brother. From the beginning Douglas slept and fed well, and appeared to thrive. I recall saying to the Plunket Nurse (visiting Child Health Nurse) when she first came, that Douglas had not had a bowel motion for the 6 days he had been at home. Because there were no obvious problems, the answer was effectively "Breast fed babies don't get constipated, he will develop his own pattern". I cannot recall whether or not he had had a bowel motion in the 5 days we had spent in hospital after his birth, or whether he passed meconium. I can only assume that he did, as I would hope that some concern would have been raised if he didn't.

Apart from the irregular bowel motions (the only record I have in his child health book is a comment from the Nurse at 21 weeks old, suggesting that he be fed prune juice as required), Douglas was a very happy and healthy baby. He grew steadily and gained weight at the normal rate. He crawled at 9 months, walked at 11 months.

Douglas developed a pattern where after a week or 10 days of no bowel motions, his abdomen would become hard and distended and his behaviour would deteriorate. Then, (almost always while he was asleep), there would be a very large motion, his abdomen would become soft and flat, and his behaviour would improve. This continued through until Douglas was 2½ years old. He had been seen by the GP (for constipation) on at least two occasions in this time, and had been prescribed lactulose. Toilet training was out of the question, and it finally reached the point where I could not accept that an otherwise normal and healthy child, who ate well and drank plenty, could be constipated so regularly. I remember saying to the GP "There is something wrong with Douglas, and I want to know what it is".

Douglas was then referred to a paediatrician, who organised a barium enema. The results were strongly indicative of Hirschsprung's Disease, and a series of enemas at paediatric outpatients, followed by a rectal biopsy was organised. The biopsy was normal, but it was suggested that the sphincter muscle was too tight. Two months later, the sphincter muscle was released slightly and we were given an anal dilator to use on Douglas. The only improvement shown by this was that we now got results from enemas (previously they were totally ineffective). In June 1989, (Douglas was now 3½), a further anal dilatation and biopsy were done. There was still no evidence of Hirschsprung's Disease, and another barium enema was done a fortnight later - this was strongly suggestive of Hirschsprung's! The surgeon decided to treat him as if he did have Hirschsprung's, and on August 8 1989, Douglas received his first colostomy. The immediate change in his overall health and behaviour was remarkable. Two months, and two prolapses later, a Soave pullthrough operation was done, and then on December 5, 3 days after his 4^th birthday, the colostomy was closed. His recovery was not straightforward, and it was almost a fortnight before he had a natural bowel motion. He was discharged, and we were told that there would probably still be the odd problem, but that he should grow out of it. Douglas was on constant doses of laxatives, but despite this, he had 4 hospital admissions in the next 12 months, all for bowel obstructions (or pseudo-obstructions, as no reason for these showed on X-rays).

In July, 1991, when Douglas was 5½ , we shifted to Christchurch. For the next three years, Douglas was more or less OK, but still permanently on reasonably high doses of laxatives. In June 1994, Douglas again was admitted to hospital with a bowel obstruction, and we were referred to a surgeon in Christchurch. Neither Dunedin or Christchurch at this stage had a paediatric surgeon, but a general surgeon who did all of the paediatric surgery as part of his caseload. We were told to carry on as we had been, and in addition to the laxatives, we were now supposed to administer enemas at home. At this stage we felt that we were never really on top of Douglas's problem, and that we were only maintaining at an unsatisfactory level. Douglas was hospitalised again in 1995 with an obstruction, and despite my pleas to the surgeon, he simply recommended that we increase the frequency of the enemas. As these were now being forcibly done to a 40kg nearly 10 year old, and the results were several hours of severe gripey pain, and not much else, I tried to convince the surgeon that there had to be an alternative. He replied that the possibility of more surgery existed, but that he thought it should be done later, not at this time. He did repeat the rectal biopsy, and at this stage we were told there was definitely aganglionic bowel present, despite the pullthrough that had been done 6 years earlier. Fortunately(?), before I had to start becoming really assertive (stroppy?) again, this surgeon retired, Douglas was left on a regime of laxatives and enemas, and we looked forward to the possibility of a new surgeon who might have better ideas.

In February 1996, just after we had been sent an outpatients appointment to see the new surgeon, Douglas was again admitted to hospital with a bowel obstruction. After this was cleared (these obstructions all cleared with a Nil by Mouth and IV fluids regime - usually in 2 - 3 days), the new surgeon (a colo-rectal surgeon, Greg Robertson) arranged to admit Douglas for another rectal biopsy (they all seem to like to get their own results), but in the week prior to this (and only 3 weeks after the previous admission) Douglas was again admitted with an obstructed bowel. The biopsy was done earlier than planned, there was definitely aganglionic bowel present, and it was agreed by all, including Douglas (now 10 years old) that a colostomy was the only answer - at least to buy time to consider proper decisions. There was also at this stage, the promise that a specialist paediatric surgeon (Spencer Beasley) would be starting in Christchurch later in the year, and that he would probably have some valuable input.

Once again, with a colostomy, suddenly there was no need for laxatives and enemas. Douglas maintained that the extra surgery, and living with a colostomy was still infinitely preferable to the constant enemas. His overall health and happiness increased markedly.

In consultation with Mr Beasley, it was agreed to go ahead with another pullthrough procedure, although he explained that it would not be straightforward (as he was having to work in an area that would probably have scar tissue from the previous surgery), and would certainly have no guarantee of success, but that it might work. He explained this very clearly to Douglas (now 11), and said that the decision had to be largely Douglas's. Douglas decided to go ahead with the surgery (he said to me "You can't win Lotto if you don't buy a ticket"), and on April 3, 1997, he spent almost 5 hours in the operating theatre, having the pullthrough done, and an ileostomy formed, as the bowel from the colostomy site was pulled down.

8 days later he was discharged, with the plan being that in 6 weeks time, the ileostomy would be removed. Unfortunately this was the beginning of a year that saw Douglas admitted to hospital 18 times! The first complication was a partial obstruction, 10 days after discharge. That was cleared, and he was discharged again. Unlike every other lot of surgery, Douglas failed to really recover from this round. I had contacted the stomal therapist, and she agreed with me that he didn't appear well, but there was nothing obvious wrong. Finally on May 10 he was readmitted, and after X-rays, a CT scan and an examination under anaesthetic, it was discovered that the join in the rectum had abscessed and was leaking. The whole pelvic are was showing signs of infection, so there were IV antibiotics, a catheter etc, and a dose of cellulitis as well. Between June and September, (at which stage I had taken long term leave from work) he had weekly admissions and trips to the operating theatre so the abscess could be drained, and the join worked to try and avoid a build-up of too much scar tissue. He also had a prolapse fixed, and 4 admissions for obstructions. On the last trip for an obstruction, the surgeon told Douglas if he saw him again unplanned, he would cut him open to see what the problem was. The threat worked!! The highlight of the year for Douglas was a 10 day trip to Disneyland, San Diego and other fun places, with other sick children, courtesy of Koru Care, funded and run by Air New Zealand staff. This had also provided some incentive for him to get better. By this stage the abscess was still being drained monthly, but he was essentially healthy, as long as he ate carefully - white bread, bananas and chicken, absolutely no roughage.

There were two more admissions for stoma prolapses, in December and February, and two admissions for unidentified abdominal pain in April and June. A gastrographin enema in April finally showed no leak at the lower join! - 12 months after the surgery for it.

On June 24 1998, the ileostomy was closed, the bowels moved 4 days later, and Douglas was discharged, supposedly at the end of his treatment. Alas, this was not to be. He was readmitted on 2 July, with an obstruction at the lower join, and then as that cleared, he developed his first ever bout of enterocolitis. This did not respond to any treatment and after getting progressively sicker on July 10, he was taken back to theatre, and a colostomy (at the very beginning of the colon - an ileostomy really) was reformed, but then just to add to his problems, he developed pneumonia, and a partially collapsed right lung. More antibiotics, and a discharge on 22 July. Four days after the antibiotics were finished, and the night before he was due to return to school after almost 6 weeks away, Douglas was again admitted to hospital with a relapse of the enterocolitis. A CT scan done showed that his whole colon was decidedly unhealthy, and there was a question at that stage as to whether it would all have to be removed, leaving Douglas with a permanent ileostomy. A colonoscopy in October showed that all was looking healthy, and there was now an option to move the current colostomy further down the colon, and into a more convenient site (the July one was dictated by his health). This was done in December 1998. The option remains to close this colostomy at a later date, but no-one (surgeon, Douglas or parents) is in a hurry to have another year like 1997 or 1998.

Since then, Douglas's only overnight stay in hospital has been as the result of a broken arm, sustained while playing rugby!!

He is healthy, and growing (at 14 he is 1.8m tall) and has shown that the colostomy does not need to stop normal life. He plays rugby and squash, body-boards, and had an overnight tramping trip with his class at the end of the year.

Rachel Watson

January 2000.

Update August 2001

Here are a couple of pics of Doug in their last game of rugby for the year.

You can see that it's a fairly physical game. Doug has always loved it, and it has provided him with incentive to get better on several occasions. Also for those worried about ostomies, he does all of this with a colostomy, and the surgeon gives his blessing!!