Another update (Crohn’s Disease)

Hey there! Scroll by guys if this post isn’t for you 🙂 … but I wanted to share a little update on my Crohn’s journey and I feel a little bit stuck, so sometimes it’s just good to write about it…

I’ve been patiently waiting for my doctor to get back to me about a new drug I was going to trial. I mentioned it here if you aren’t sure what I am talking about. In summary though, I haven’t been great, found a new doctor and he was going to try and get me on a new drug called ustekinumab (it’s a biologic with only a few people in Australia on it so far). This was my last resort before I headed down the track of a colostomy.

Anyway, it’s all turned a little sour. I am a feeling a bit lost and sad. The new doctor told me about 4 weeks ago to sit tight and he’ll put an application in for me to have the new drug and he’ll get back to me. I have been waiting and waiting…. Yesterday he rang and after a long conversation he basically told me I should go back to my old doctor. He had a bunch of reasons why. The thing is, I don’t want to go back. Not because my last doctor was bad at her job, because she’s not, she’s very good at it. But I felt like I needed something new and I made that decision to search for a new doctor with whom I could build a new rapport. I’m 40 years old (well in 3 sleeps I will be!) and have had this disease since I was 19, so I am not an easy case, plus I know I can be difficult to get along with sometimes. But I also know this disease, and I am the one living with it. I really wanted a fresh set of eyes and someone who is prepared to take me on.

Basically, the new doctor says he can’t get me the new biologic because I must be approved based on a particular and specific history chart which my old doctor has. Something to do with a history chart that was filled out to create a score out of 300 about 8 years ago. I don’t really know what that means, but it was something done when my disease wasn’t great and I needed humira. But I don’t want to go back there. I don’t want to be treated there. I wanted new eyes, a new face and I wanted a new care plan.

So after some tears I feel like I have to start again. I can’t possibly NOT be given the drug based simply on where this actual history chart is? Surely a new doctor can get that information?? And I refuse to believe otherwise. Because what happens if my old doctor stopped practicing? Surely any new doctor can gather all my old files and charts?

I feel like the new doctor just thought I was too hard and he’d been scrounging for an excuse to palm me off. Maybe?

Anyway, I am starting again. Sigh. I will have to go back to my GP and get a referral to another doctor. And start again. I saw a great doctor 10 years ago who now lives in Sydney and he was recommended to me again recently so I need to find out whether he can take me on. In the meantime I will have to try and keep well because again I don’t seem to have any proper care. I actually feel like I have been winging it myself for about 12 months now.

OMG is all I can say. Onward and upwards I guess! I am sure there is a doctor out there that will take me on. I am positive of that. This is just another bump.

Thanks for listening today. A ramble feels good sometimes.

♥ KC.