Hello adoring public.
My name is Amanda and as the name of my blog and this first story suggests, I have Ileocolic Crohn’s disease.
Its been a very long road getting to this diagnosis – well getting near it. I still haven’t been back to the specialist yet seeing he was booked solid for more than a month after “the test”. I started showing signs of Crohn’s disease when I was 15 or 16. Given my sporting choice and the fact I am not the most gentile, wallflower in the world, I broke a few bones in my hands. One ill-fated day, I went to South Coast radiology after breaking (yes I knew before they did the x-ray) the third and fourth fingers on my right hand. I would get into how I accomplished this – but the reality is it will make me look prematurely stupid. Next day I had the obligatory doctors appointment which proved nothing more than he could read the radiologists report. My doctor stared at the report for a long time that day. He then did something I had never seen before or since, he put the x-ray up on his little viewer and solemnly explained to me that I had joint inflammation in the fingers I had just broken and the areas surrounding them. I replied with something unwittingly sarcastic about a what good job I did. His tone didn’t change with my remarks – uh-oh. We sat down and talked about how this basically meant I had early onset rheumatoid arthritis. The reality of that conversation didn’t strike me till a few years down the track when my on and off ‘pangs’ of pain became more of a constant counterpart. I was on anti-inflammatories on and off, but the medical profession doesn’t like proscribing them to young people, so there was never any prolonged relief. Like most people with the disease I had good days and bad days… but I didn’t have that disease.
In August 2005 my abdominal symptoms started. I remember the date clearly cause I was celebrating my recent separation for my husband at the time in New Zealand – on my first ski trip. I remember being atrociously sick one night and not being able to get out of bed the next day. At the time I thought it was just something a bit off with my meal and carried on as usual – these things happen right? It happened again when I came home, and again. So I finally went to a doctor (not my usual one, one who bulk billed) who told me I had an allergic reaction to something in Mexican food (it just so happened that these symptoms occurred after I had eaten Mexican). So I stopped eating Mexican – but it kept happening. I did everything to try and figure out what was causing my illness. Finally I came to my wits end and went back to a different doctor to try and get my problems sorted out. After a barrage of unpleasant tests and a very long story that I will tell in smaller chunks, I have probable Crohns Disease. Remember, the fat lady doesn’t sing till next Wednesday. The scariest thing about what I have is how little is known and published about it. There is a bit of stuff on Wikipedia and on those doggie “diagnose yourself” websites, but all the material is very tactfully worded with a lot of conjecture. The reality is – no one really knows what it is, what causes it or what puts suffers into acute phases of it. So here I am. I have no hard medical facts, apart from what’s on my reports and what I am told, but here I will post my story. How I was diagnosed and cope with Crohns Disease.