Last week we finally got to see a consultant at the adult hospital to proceed with her treatment. Last year she was told she'd be referred but we didn't hear anything. So I requested her notes from the hospital and they also sent me a disc of her scan results.
It was all very interesting, but there were two things that spiked my interest. Both were on a letter from the consultant that we had been told Lucy was being referred to. The first was that she wasn't taking any new patients and she didn't think Lucy required her help. The other was a question to the referring consultant asking if Lucy had been tested for slow transit constipation.
I was on it straight away. First I wrote to the referring consultant and asked if he was thinking of testing Lucy for slow transit constipation. Secondly, I wrote to the other consultant and asked if she'd actually looked at Lucy's notes and could see how obvious it was that her help was needed.
Then two things happened. Lucy was tested for slow transit constipation, which indeed she does have. And she was seen by the new consultant's team and her treatment is finally going ahead.
Sometimes you have to shout to be heard. I'm not very good at advocating for myself but I'd do anything for my kids.
So what is slow transit constipation? Well, it's the slow movement of the poo through the large intestine. Most bowel diseases occur in the small intestine, that's why Lucy does not have IBD. She does have problems though, and it gets a little more complicated when it comes to the large bowel.
Because Lucy has had these problems a long time it's hard to see what is causing it so the first line of treatment is to empty the bowel and concentration on medication to keep it empty, or moving. Lucy has had medication before but it's never really helped much, so now she's an adult they are stepping it up and we have two months worth of suppositories and enemas as well as pills to take. Once she is emptied then she will be monitored with the medication only. If that doesn't work, then there is a stronger medication. If that fails then she will undergo more investigation and could end up with an operation. But that's a long way off and I'm hoping the medication will work.
The big worry is the syringomyelia which could be the cause, but it could still be controlled with the right medication.
Fingers tightly crossed for my not so little, little girl.
