Friday, February 12, 2016

The 'R' Word & Me: Remission

Remission. Just saying the word completely stuns me and leaves me wordless. I recently heard this word referring to my health status and I want to write a blog post about how I have no idea what to say in response to this word.

Remission has been a dream since the onset of my severe, refractory Crohns Disease 3.5 years ago. We were hoping that the steroids would be enough to kick-start my system back to healthy and get the inflammation under control, then it was the sulfasalazine, the Remicade, the Humira... Each time the doctor would be hopeful, and each time it just wasn't enough, or the right medication. In 3.5 years I haven't caught a break, I've been in what's called a continual state of flare despite the doctor's best attempts to get in under control. And trust me, they threw it all at me, ending up with me often having to take handfuls of pills a few times a day. I guess my disease is just like me, strong and determined. I haven't decided if that's a good thing yet or not.

I think the main problem with me thinking about remission in terms of myself is that I feel no better physically (and that's a whole other post). I always thought that when I was in remission I would actually feel physically better. I would no longer be continually regurgitating my food for hours after eating, I wouldn't feel the pressure to be constantly near something in case my nausea went overboard. I thought I would feel healthy in remission, or at least a lot different than I do right now.

So if I don't physically feel better, what are they basing my remission status on? That's a great question and exactly what I asked at my last appointment when they gave us the 'R' word. The doctors are basing the idea of remission on my blood panel values. In Inflammatory Bowel Disease they often monitor your ESR, CRP and albumin levels as a sign of what your disease is doing. The higher the values, the worse off you are. My levels have returned to within normal range.

Fantastic, glad to hear that my levels have returned to normal. But hold up, there's a problem with this. In the past, just prior to having scopes done, my blood levels have also been within normal range and yet when they go in to have a physical look, it's come back that the inflammation and ulceration has been worse than ever. So I've had good blood values, but crappy looking insides. This doesn't really surprise me a whole lot though because even when I had my colon and was running to the washroom literally every 15 minutes (I couldn't leave the house and often left blood trails everywhere), I was losing straight 100% blood. With the amounts that I was losing, my blood values should have technically been in the hole, but somehow they were maintained at within normal range, at least until after I had my colon taken out, then I had to have iron supplements. But my point being, my blood results don't tend to reflect what is physically going on with me. Yes, I no am no longer outputting blood, except for my bottom end. That's awesome news. Yet my output is still crazy, at my last set of scopes a few months back I still had new inflammation popping up, and I've been feeling absolutely horrid. I don't even remember what it's like to feel physically well any more, but I know that this can't be how it feels!

Am I in remission? Only time will tell I guess, until then I continue on with the Stelara injections every 8 weeks and attempting to continue living life to the fullest.


  1. Wondrous expression of self... 0/\0 Truly captivating and indeed very thought provoking upon the void that still remain following a state of Remission..

    With Peace & Love Always

    Nicholas P. Timms

  2. Bless your sweet heart. It's hard enough for adults to deal with this disease, but a child should never have to. I pray that you find relief and healing soon. Stay strong little man! I have a Jacob too. :)