Saturday, 18 July 2015

Remission Impossible

Yesterday I got a little bit of Crohn’s-related good news! Yippee! Long overdue, and the first time I've been able to report anything even approaching happy bowel s in…well EVER.

 The results from my latest Calprotectin sample, (my stool, or poo to the uninitiated) show that my Crohn’s Disease is currently inactive. INACTIVE. This perhaps doesn't sound like much to those of you without the disease, but let me tell you this: for me, it’s BRILLIANT. This is the first time since my diagnosis that my disease has been ‘inactive’. Up until now it’s over-active. It’s never stopped. It’s never been lazy a day in its life. It’s had ADHD. You get the general idea.

To some people they will call this period of inactivity, ‘remission’ or something similar. I'm not sure how I feel about that, mainly because I know I'm not cured. Temporarily or otherwise. I’m not ‘better’ and I'm not ever going to be. In no way is any of that intended to sound negative, because I'm honestly chuffed, but I also don’t want to get ahead of myself and assume the rest of the next few days/weeks/months will be a disease-free breeze. I also don’t want everyone around me to assume the same. I need to be honest with myself and avoid falling into the trap of setting myself up for a sickly fall. I've been there too many times and it’s more disheartening than learning Jon Hamm isn't single.

I also don’t want to be perceived to be unkind or insensitive to those of you who are really struggling at the minute, because I know how hard it can be to hear happy tales when you feel inches from vomiting/destroying the porcelain/death. I’d just like to share my happiness at being ‘OK’ for the first time in my life. That’s alright isn't it? It’s positive. 
It’s something not normally associated with chronic illness as positivity isn't a choice, it’s a trial. 

Living with Crohn’s has always been a day-to-day challenge, every day is uncertain and you generally live under a cloud of anxiety, from the banal of ‘OMG I might need the toilet in a hurry and I’ll be on this bus for an hour’ to the terrifying ‘I really don’t want to die’.
Without exaggeration, I've spent years wondering how to adapt my life to constant pain. I've accepted agony, nausea and everything else that goes along with this illness as part of my new existence and struggled to be normal around it. I've berated myself for wallowing, I've been racked with constant guilt at becoming a cause of worry or even a burden on my family and friends, I’ve had parts of my internal organs removed and I’ve come close to losing my job several times due to this disease. 

What I'm saying is, it’s been really hard, and I'm looking forward to wallowing in feeling OK for a wee while. I don’t really even care how long it lasts, as long as I get to remember what it feels like not to have the bowels of Satan grumbling within me.

So I hope you are all well enough to join me in raising a delicious glass of bowel prep at my little glimpse of happiness! I know I’ll be toasting to all of you! xox 


  1. This really is terrific news, absolutely delighted for you. Seems that the infliximab got to work pretty quickly - does this mean you'll be staying on it for the foreseeable?

  2. Congrats Kathleen, From Louise @balletshoes69 and me. Really chuffed for you. You deserve a break for all the good work you do. Keep it up. Louises is not so good with her Crohn's and your words have helped me understand her battle a bit better. Plus you make us both laugh with your tweets. You're the best.

  3. Thank-you both! Hopefully Infliximab for the foreseeable, will know for sure when I see consultant next month! :)
    Jim, so sorry to hear Louise isn't doing too well, sending lots of love to you both, fingers, toes and baps crossed she perks up very soon! <3

  4. This is great news Kath I hope it stays inactive for the forseeable future! x

  5. Thanks Leanne! Hope you're well! <3