A standard thing for any Crohnie on a long term medicine like Infliximab (or Remicade depending on where you call home) is the “level check”. How much of the drug is still in your system after a scheduled dose and have any antibodies developed that are fighting the drug making it less effective?
So I was having a follow up appointment after getting my own “level check”. I was in remission for several years at this point and a switch to a low carb high fat diet had helped reverse an increasing upward trend in my inflammatory markers. Things were actually going good. I had so much more energy and the dreaded “brain fog” wasn’t nearly as bad.
My number pinged on the appointment screen and I headed in to see my doctor. From the moment I walked in he was looking at me slightly funny. It was kind of a slightly puzzled look on his face.
“How are you feeling?” he asks as we shake hands (pre-Covid obviously!)
“I feel great. The diet is really working out”, I enthusiastically reply.
He looks up at me briefly, then back to the page that I assumed were my
test results and he asks again.
“No symptoms? No pain? You feel good?
“No. Nothing like that. I feel really good”.
His slightly puzzled look is still there as he continues, “Your blood tests are great. CRP is great. Liver and everything else look great. Everything looks fantastic actually“.
Everyone loves good news and I am obviously very happy to hear all that.
The doctor looks up and looks me dead in the eyes “You have no traces of
Infliximab in your system and you have some antibodies….“
That’s the noise of the significance of that flying right over my head.
For some reason instead I hear “your blood tests are a-m-a-z-i-n-g and as there’s no Inflixmab it means I don’t need it any more.” Inside my head there’s a marching band about to kick off. “Ho-ly. F*ck. He’s going to tell me I don’t have Crohn’s any more. He’s going to tell me I’m cured! I f*cking did it!”
I also notice that somehow I’ve crossed the fingers on my right hand and hidden them beside my right thigh on my chair.
I almost blurt out “Am I cured?” but the same voice in my head that’s ready to party says “eh, maybe don’t do that just yet, play to the Ref’s whistle!”
He continues “…You should probably be really sick right now, thankfully you’re not. Are you sure you’re ok? We have to move you onto another drug quickly, there’s been success for patients like you who moved to adalimumab. We can try that and if that doesn’t work we do have a couple of other options“.
I remember laughing to myself on the train home that I thought I had cured an incurable disease. Maybe I should have been more concerned about it, it is a big deal to lose one of the options that had been working for me. It could have put me right back to square one. It would’ve been more than a decade of hard work all gone. One thing I’ve learned living with a chronic illness is that you can do everything right and still it just doesn’t go your way so a sense of humour matters.
It was a few years ago now and I still get a chuckle out of the whole thing. You have to admit it would have been pretty f*cking cool in all fairness if I had actually cured Crohn’s by cutting out carbs and eating more pork belly!
And the fact I’d crossed my fingers too…f*ck! That still makes me cringe a little!