Judy - Continued

So you've heard from Sara who's kind of skipped to our current situation, so I'll just quickly fill you in on what happened once we left hospital.

Sara spent 7 days in hospital. 7 grueling days on "nil by mouth" for most of them. Gradually liquid was reintroduced, then light foods and we came home. Actually we walked out of the hospital a day earlier than anticipated because someone in their wisdom at the hospital decided that they would move a 16 year old girl in a ward with 3 men.

My GP referred us to the gastroenterologist he uses for a colonoscopy and endoscopy. Sara and I did not really like this specialist at our first meeting but my GP assured us he was "the best" (Lesson 1: Trust your first instinct and don't always listen to your GP). The colonoscopy showed an area of inflammation in the small bowel at the meeting of the colon. Further pathology tests confirmed Crohns Disease.

I guess I thought (naively) that once we knew it was Crohns, Sara's condition would just be managed with medication. In fact we wasted 2 months with this specialist who we didn't like and her condition just got worse and worse. Her CRP (which measures the inflammation in your body) results were consistently high, and a subsequent CT scan showed the area of inflammation had increased from 5 to 12 cm. The specialist appeared "stumped" at our last appointment and I went to my GP to angrily insist on a 2nd opinion.

Finally I think we have found a doctor and a team who'll support us until Sara improves. This doctor firstly acknowledged that she was very ill and that we needed to see the IBD (inflammatory bowel disease) clinic at the Children's Hospital in Randwick. Here we have access to a dietician, psychologist, pain clinic and doctors who all work out the next course of action.

So we find ourselves in this unpleasant situation. Sara is not allowed to eat any solid food for 8 weeks. Yes, that's right 8 weeks. She is surviving on a product called osmolite which she mixes up with nesquik and chewing gum.

It goes against every maternal instinct I have. I want to feed her up with vegetable and chicken soup. I'll happily puree and prepare special foods, but I'm not allowed to. The osmolite is giving her bowel a rest and at the same time we hope all the inflammation calms down and she's pushed into remission.

So fingers crossed. Week 1 is complete.