There isn’t anything blog worthy going on right now – which I have to say is a good thing.  Its nice to not have anything new to write about.  I am in a bit of a holding pattern until next Monday.  I have my first appointment with the Australian Crohn’s Specialist who lucky for me, operates out of Gold Coast Hospital.  What’s better is his consultations are free.  I was referred to him for a few reasons the main one being my complications.  I am hoping, perhaps unrealistically, that he might be able to keep me out of hospital for the next few years at least.  We’ll have to wait and see.  Ross offered to talk me to my consultation on Monday, he could hear my apprehension through the phone.  I am nervous because this consultation could also go completely the other way – as in “we need to get you in as soon as possible to remove the damaged section of bowel”.  If removing it would actually give me some relief then I would jump at the chance, but Crohns will reappear in less than 12 months.  So unless the piece of bowel in question is doing me harm, I just want to leave it alone.  Yes, anyway, Ross offered to take me which was beyond nice.  I know how much he loathes hospitals having seen the inside of so many so often over the last 3 years.  And with another surgery for his wife looming – I would put money on the fact it’s the last place he wants to be.  I will take him up on the offer if Stocker can’t get the day off… but as things are, we both have a lot of questions and it would be better if he were there in person to ask his and hear the answers to mine.  Of most concern to him is “when do I take her (me) to hospital, cause she’ll never tell me she needs to go”, true.  I should have ended up there a few times at the beginning of the year – but I protested so much he let it be.  Realistically though, any of those times could have turned into a life threatening episode.  You can’t tell by looking at me my bowel has perforated and time is defiantly of the essence in that instant.  Hopefully this new guy will be able to give Stocker some warning signs that will, if nothing else, put his mind at ease.

Other than that…. I have one burning question, which has only been raised in the last few weeks… If they had of correctly diagnosed me 12 years ago when I started to show signs of Crohns, would I still have got the stricture?  After everything I have read, I am leaning toward no.  The specialist I am seeing believes that my stricture is most likely solid scar tissue created by ramped attack after attack.  If the Doctors I have seen over the years hadn’t of told me “its not THAT bad” constantly, when clearly it was, I may have been able to avoid the dangerous part of the disease.  I would have been left with plain old Crohns, sure I would have still had it, but it wouldn’t have the capacity to be fatal.

I have already drafted half a letter to the GP who missed what my specialist considered “obvious signs” of Crohns Disease.  I intend to send it after I get this new question answered.  It’s not rude or hateful.  It’s factual.  I plan on telling him how much financial discomfort he caused us by not bulk billing my test.  I also plan on illustrating that occasionally it would pay him to listen more to what his patients are saying rather than just dismissing their pain as “not that bad”.  I have a feeling he knows most of this – I was meant to be contacted by him after I had the last lot of blood he ordered taken.  I did the test, but I was never called to make an appointment… by that stage he would have received the specialists report from my Colonoscopy.  He would know that it was as bad as I was trying to tell him.  I really hope he learns a lesson from what happened to me – because I can’t help but wonder how many other people are suffering in silence because he tells them “its not that bad”.