Monday the 12^th of July I was accepted in to the public hospital system as a Crohns patient.

I feel a bit like pass the parcel at the moment… every time I see a doctor he strips back another layer of the disease and hands me on. I hope this is the last handball.

I was anxious going in because I knew that this consultation might not go in the direction I was hoping.

My appointment was with Dr E in the endoscopy ward at Gold Coast Hospital. The first thing I noticed was how nice the staff were… I don’t know why I was expecting them not to be nice? Perhaps its because they aren’t paid well for what they have to put up with? Or because occasionally in a public hospital they have to treat disrespectful, nasty and sometimes even violent people, cause that’s their job.

Dr E was dry… very dry, but I actually find that kind of entertaining. I like dry people – always have. He took a full history – well as much as I could tell him… It’s a bit hit and miss with me – because I was told it was “all in my head” for so long, I stopped talking about it… and more importantly, I stopped keeping track of it. At some point before he started reading my case or looking at all the studies done on me… he noticed the ulcers in my mouth. He told me to hold my mouth open and inspected them – with some curiosity it seemed. He concluded by saying that those ulcers were a direct result of Crohns disease. My mouth ulcers have been a problem for me long before problems with my joints were spotted. I remember as a child of perhaps 10, doctors trying to treat it with a foul tasting white paste I had to leave on my tongue for 30 painful seconds. At the time – I didn’t tell him that… I was a bit shocked… I mean I knew mouth ulcers were a possible symptom… but I had never considered that this disease could have been a problem further back than my teen years.

At some point, when I was discussing all the things that had been said to me by my former GP… he stopped, asked for his name and place of business, and then remarked that he would be receiving a letter. I was a bit stunned on the outside, at the same time I was doing cartwheels on the inside. Even if it means one person is not sentenced to the same future as me… then well I guess its all been worth it. I guess that doesn’t make sense. You can’t cure Crohns disease – I doubt you will be able to in my lifetime, but the longer its left to run ramped in your body without any treatment or controls, the worse the destruction. Later he did eventually look at my test results, happily he said they have “better” tests that the Small Bowel Series that entails you swallowing about 600ml of Barium, and that I may never have to go through that again. His face soured when he looked at the images. My previous hopes that I would avoid surgery were dashed in that moment. He said with some assurance that there is just too much damage – its no longer a question of “if” it’s a question of “when”. I will continue to see him for another 4 months while on the Budesonide, at the 6-month mark he will make a decision. He said with some certainty that I will go under the knife within 4 months – 2 years. Its not something that they like to do cause once that bridge is crossed, the likelihood is they will just keep cutting till there is nothing left to cut and secondly because Crohns patients are more likely to pick up and get sicker with a post operative infection than normal people. Unfortunately there is no longer a choice for me, because it was left to go on too long and this fact will be presented to the GP that allowed it to happen. I hope he reads the letter and he sleeps a little less well at night knowing that he is responsible for my Crohns disease getting out of control.

Diet is another thing we covered… the previous specialist I was seeing told me to “try and stay away” from high fibre food. He never gave me any indication of what that was… I mean I knew the obvious like brown pasta, bread, rice and anything that says “wholegrain”. But there is more… It’s not that bad though – it basically just suggest the food that I already eat with a few changes like de-seeding everything… which I have no doubt I can manage. It was nice to finally get a direction to head in though. He did say that the diet might not help avoid flare-ups altogether but it will help me get over them quicker and avoid doing more damage.

The last thing we covered was medication. I had done a lot of reading and thought I was prepared for what he was going to say, I wasn’t. We were on the topic of my worsening headaches when he identified that I was taking Sulfasulazine. He told me to stop taking it immediately. Apparently Sulfasulazine is only effective on superficial cases of Crohns, where the disease is contained to the outer part of the bowel lining – mine is not one of those cases, so its useless on me… it isn’t even that effective on my joint pain. I will admit that I have felt a lot better since being off the Sulfasulazine – I hope that is the root of a lot of my problems. Second to that – we found out that Entocort, the Budesonide, is only used as a contact drug to reduce swelling and calm flare-ups. Its is only recommended that you take it for a maximum of 12 consecutive months, if taken for longer its effectiveness reduces and it starts doing irreparable harm to bone density. They are only keen to keep me on it for 6 months so they can fall back to it should my situation worsen. After 6 months I will be rotated onto what they call a maintenance drug… he did mention the name – but I was on overload so I will find out more about it next time I see him. I had hopes that the Budesonide was going to be slightly cheaper through the hospital dispensary, he confirmed that it would be… Nothing shocked me more than when he said “well its still the more expensive option so the cheapest it will come down to without a health care card is $33.30”. Surely I had heard wrong… surely he meant it came down $30.00. No, anything proscribed by a specialist in the hospital comes to you at a maximum cost of $33.30 – the gap is paid by the State Government. I could have cried, in fact I nearly did. We were under the impression that I would be on the Budesonide for the rest of my life and it would continue to cost in the realm of $200 every month. Don’t get me wrong – we still aren’t in what I would call good financial shape, we are paying off about $2000 worth of tests, but my stress level has come down considerably. So the Federal Government might not give a dick about what they are doing to people who are sick and struggling, but at least there is some relief.

One thing I will say to everyone who has Crohns Disease in Australia, is get referred into the public system as soon as you can… tests and procedures are free… medication is subsidised and I have finally had a consultation with a specialist who is informative and I like. The only reason I would consider hospital cover now is so I can avoid waiting times for surgery. Perhaps the system isn’t as broken as I thought. Its more the attitude of the doctors and specialists that if you hold down a job you can afford to pay for your own health care. They don’t even take one minute to listen to your personal circumstances – they don’t care as long as they are getting their kick back.

The key to the system is to know your rights and their responsibilities. Once you are an outpatient in the public system everything changes. Our system is there to support those of us that are lower or middle class – the ones of us that cant afford private health and expensive medications. But it is obvious that there are some doctors and specialists out there who aren’t in it to help people – they are in it for themselves. Take it from my story – avoid the ones who tell you “its not that bad” and wont bulk bill your tests… cause they don’t want to be “troubled” by you – so they try to make money out of your misery. Doctors like mine who’s practice is in Mudgeeraba Qld, are low life scum who should have never got their license to start with – let alone be treating people.

It’s not the system that’s broken, it’s some of the people in it.