Thursday, November 12, 2015

It's G-Day! (a.k.a. Biopsy & Scopes Results Day)

Welcome to G-Day, my short form for "Go-Going-Gone Day". Today I get the results back from round #12 of the scopes & biopsies to see how the Crohn's Disease is responding to the latest treatment we're throwing at it - Stelara. Judging by the calls coming in to my mom, I'm thinking that things aren't going to be as awesome as the last set that showed improvement. They've already told my mom that there was more significant inflammation.

Today things need to change. I haven't been able to go to school in a week because when I stand up, I'm so dizzy that I want to fall over. Even just sitting down, I'm dizzy. I can tell you one thing for absolute certain - when you're feeling like you want to throw up, the feeling that everything is moving while you're standing still is NOT helpful! I've also been in more pain lately, but I don't really admit to anyone that I'm in pain, including myself. I'm scared that if I admit I'm in pain that it's going to set off this huge chain reaction of events beyond my control. Yet more and more lately I'm not able to meditate away or ignore the pain.

My mom learned just how rare I really am this week. She was talking to the Stelara drug representative and out of all the patients being treated at the largest children's hospital in Canada, there is only one other child that is on this particular treatment. I knew I was "special" but that special? I wish that things could just once be straightforward with no complications.

Something else really upsets me more than all of this though. There are treatments available in the world that I could try that are not available to me in Canada. For example, the latest Stelara studies to be done, showed that from a control group, to a 130mg group to the 6mg/kg group, the individuals in the 6mg/kg group showed the greatest improvement. The 130mg group had a tiny bit of improvement over the controls. I'm on 90mgs. If we go by weight, I would need about 300mgs, which is an IV infusion dosage. This is an available delivery method in the US, but not in Canada, here we only have 45 or 90mg injections. Then there's the newer medication, Entyvio, that's being used in Pediatrics in the US, and available to adults in Canada, but is months away from being approved here. These are two options that could really benefit the IBD community, especially people like me who haven't responded.

Go, going, gone. I wish that we could GO to this appointment knowing that things are GOING to get better to get these symptoms GONE. As I said, it's 'G' day!

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