Jenni’s Story – The First

... by Jack's mum

Jack is now three and a half years old and, I am lead to believe, the youngest member of YOU Inc. Not really a title we were aspiring to for our young fella but who knows what life is going to throw at you.

Jack is the youngest of three children.  He has two sisters, one aged five and the other got to have her seventh birthday whilst Jack was having his fifteenth hospital admission in August. Both Jack's sisters and parents have no signs or family history of ulcerative colitis, so there's another first for our boy!

Jack was a normal, healthy boy except for the fact that every nappy was a pooey one and runny ... it was a bit of a joke with his sisters that boys were poo machines. At normal checkups it was dismissed as toddler diarrhoea and he would grow out of it. At age two and a bit Jack had a very bloated belly one day, was uncomfortable and then had an explosive and bloody bowel movement. We went to our local hospital (regional NSW) and luckily got a very good registrar who thought it was serious and took lots of blood tests and followed up with our Paediatrician. Things then slowed as he never took it seriously and we spent the next 7 months on all sorts of elimination diets, during this time I was getting fed up and started to write down everything that went in an out of Jack daily to try to be taken seriously. When it was all on paper it looked even worse with up to 17 nappies a day, most with mucous and blood. Our Paediatrician then tried to tell me again to come back in six weeks, after a bit of pressure (i.e. mum telling him that as there are education programs out there for adults with rectal bleeding to see a doctor so surely it is serious for a small child), dad took time off work and attended an appointment to get a referral as Jack was deteriorating before our eyes.

A few weeks later Jack was at the Royal Childrens' in Melbourne getting scoped - the Gastroenterologist's first words were “We have a very sick little boy here". Finally someone was taking this seriously! We spent some time in hospital on IV Prednisolone and then came home.

Jack had his third birthday at home and then deteriorated quite quickly over a week, twice I went to the Paediatrician with my bags packed and wanted him admitted.  Reluctantly, on our second visit within a week and my refusal to leave until Jack was admitted, we spent another week in Hospital before being transferred to Melbourne. Jack spent a few weeks at RCH deteriorating quite badly before he finally had his colectomy on December 6th 2006.

Jack had his colectomy and within a few days he was back talking ... he had barely spoken for the few weeks prior so it was great to have our boy back.  Better we had him with a bag than not at all (not saying we weren't in shock over the whole thing). We went home and got his strength back and things were going well. After some more problems with our local medical services - we presented with what we now know was an obstruction and they wouldn't even take his temp (twice to Emergency and once to the Paediatrician) - we changed local services to a town one and a half hours away and have found them to be fantastic.

When Jack is well you cannot tell there is anything wrong but we went through a period of obstructions - which luckily our new hospital worked well with the Children's and treated him or transferred him as needed. From March to August 2007 we have had thirteen admissions for obstructions, which usually means a few days of bowel rest, a nasal gastric tube and IV.

Last week (early September) we had our second op for obstructions and Jack had two adhesions on his small bowel which were like a piece of string tied around it, these were removed so the good news is maybe no more admissions for a while.  However, the UC is still flaring badly in the rectal stump and the options for treating it are running out - so we are awaiting our surgeon and gastroenterologist to "conference" with others and come up with some bright ideas.

It's been a hell of a ride for the whole family but Roma the stoma and Freddy fistula are well and truly part of our lives, and definitely bring lots of laughs. Roma has a personality of her own (not sure how Roma became a she) when she is loud even in public Jack says 'Roma is being Naughty' or when I pick him up from preschool he will tell me if Roma had been good or bad today (noisy or not).  The pre school teacher is great - he only goes for three hours a week and she is still getting used to changing the bags with a running commentary from Jack or him laughing at her when during a change he announces the Roma is pooing at her. Jack is getting quite good at looking after himself and is starting to change his bags with some help, although supervision is still needed. An early attempt saw him peeling it off with mum sitting in front of him ... he peeled the bag off and then flung it across the room. The discharge is quite watery so, as you can imagine, mum wore most of it but it really was pretty funny. Now he gets reminded most times not to let go of the bag.

Jack can attend preschool, goes to the swimming pool, rides his bike, plays in his sandpit and does most or probably more than most three years olds. Just in the middle of his busy and fun filled life we have admissions to hospital. Hopefully things will slow down for a while, but in the mean time Jack and Roma and Freddy are cruising along. One suggestion from a worn out mum - if you know something's not right stand up to the doctors and fight for either yourself or your child.  We are at a point now where I have access to the surgeon and the gastro team day and night and they do listen and will help if things go wrong.  It's taken a while but as one doctor said "You're his mum and that's your job to stand up for him and you may need to stand up to me on occasion, but if you do I will listen".

Reprinted from "Y.O.U. Inc Newsletter" (November 2007)

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