Friday, August 14, 2015

A Little 'Crohn's Life' Update

Happy Friday people!

So I have been putting off an update because things are kind of up in the air right now with this whole Crohn’s thing.

The short story is, I am still not in remission as a scope last week confirmed.

The other part of this is, that I am feeling the best that I have felt in year(s).

Like, seriously – can we just look at how much I am running these days? Team no rest days over here. (I am taking one Sunday I know I know I need to – and a day of Vineyard Touring is a perfect excuse, am I right?).

 On track for another 40+ mile week once I do my long run tomorrow


These morning views, be still my heart. I have missed waking to the sun rise and pounding the pavement.

I honestly don’t know what “remission” will feel like or if I will ever go a day the rest of my life without feeling a little “off” at some point. What I do know is that if the way I am feeling on a daily basis the past few weeks is how I could continue to feel; I am okay with that.

I am tapering off of prednisone finally after a couple months back on it, since it wasn’t effective. But I still have bleeding in my lower GI which is frustrating, so I am on a new steroid. So there is that.

I have a remicade infusion next week – and don’t seem to have any serious breakthrough symptoms which is fantastic I think. BUT the bleeding part has my doctor considering an antibody test to see if the remicade is still the best course of action to continue.

Honestly, I am scared to go off of the remicade or switch because I feel well so to me it seems like it is working (he has another drug that is also infused that he would consider instead). But apparently you can’t have internal bleeding and ulcers forever or cancer risks are raised, sigh.

Also the iron infusions have worked WONDERS. I go back to my hematologist today for an update and probably one more infusion since there is still bleeding but my hair has stopped falling out in clumps and I have stopped craving ice (which I never knew was a symptom of anemia but my father the dentist is beyond happy that habit is broken!). I still need lots of sleep to function but there is definitive progress. Anemia is one hell of a bitch and happy to feel improvement.

So that is all I’ve got.

On one hand, I FEEL HEALTHY (I better pray to god I am not jinxing myself). The past 10+ months of an active flare sucked. Like royally sucked. People do not take health for granted. I think that is why I am having such a hard time taking a day off from running. I had the life sucked out of me for so long that each day I just want to embrace and the thought of being idle and not taking advantage seems absurd.

I think deep down I am fearing a relapse will happen and need to get out of that mindset. We are still figuring out how to get me to 100% and remission but for now, good lord, I am happy.

Thank you to everyone for your support, I love all the messages and kind words. More appreciated than I could even say.


  1. I am so happy to hear that you're feeling this good, especially considering you're not even in remission! And you're running outside... that is AWESOME. Just in time for the best running season of the year -- fall!!

    1. I know! It's funny though I think after running inside for so long I am not even noticing humidity or wind or any negative elements because I am just so happy to be out there. But cannot wait for fall running! (and hopefully racing!)

  2. Here is my take: a) celebrate feeling well. b) you are not going to be in remission overnight. Inflammation can stick around for a while, I'm sorry to say. But progress is progress, and you all must be doing something right.

    When it comes to my running and my perspective on my Crohn's, I see it like this: just be thankful for every step, every mile. When you have a not great day, just know that it is bound to happen. Don't let it undo you. Just know that your body has special conditions. I am technically in remission, but there are still days that aren't perfect. Don't stress over them--that will only encourage a flare and falling apart.

    Let me know if you want to talk one on one re crohn's + longer runs. K?

    1. Thankful doesn't even begin to cover it when you've gone through a flare like that! I might have to pick your brain soon on the longer runs!