Living with Crohns

Fair warning – for those of you who aren’t aware, Crohns is a disease of the bowel. That means this post may be discussing details you might not care to hear about. If you want to stop reading now, I get it. I really do.

I wrote a previous post on living with Crohns. It was open and honest but I feel like I held back a little bit, stopping short of a few details. And I feel like that does a discredit to others with Crohns disease who wish that those without it understood just a little bit more about our daily lives. Maybe this will be a step towards that understanding.

As I write this, I’m lying on the bathroom floor, doubled up in pain. I’m staying in the bathroom because, well, as gross as it sounds, the vomiting and diarrhea is so frequent that I can’t go anywhere else. I apologize for being so blunt but this is the reality of my life when I’m in the midst of a Crohn’s flare up. Oh and in case you’re wondering why I’m writing this while in such pain, well….life goes on and sometimes distraction is the only answer.

Even when I’m not in a flare, in the back of my mind, I’m always anticipating one. I never go anywhere without scoping out the nearest washroom. In fact, plans are made around bathroom proximity. I keep what I refer to as my “Crohn’s Travel Kit” in the car (a smaller version in my tote bag): a change of clothing, a pair of Depends, trash bags, baby wipes, hand sanitizer, mints, gum, ginger teabags, Kaopectate, Gravol, and a bottle of water. I also keep the “Sit or Squat” app handy on my phone to help me find those oh so necessary bathrooms in unfamiliar areas.

I cancel a lot of plans with friends – sometimes because I’m just too sick to go out, sometimes because of the embarrassment of the symptoms I’m having. Painkillers no longer work or if they do, they’re too hard on my system and instead of relieving pain, they increase it tenfold. Even those who know me best don’t always understand when I have to beg off certain foods because I know I’m right on the edge of a flare up and it will send me over the top.

I once went 23 days without eating – not one bit of food for that entire time – because every time I tried it would make me vomit. I couldn’t take it anymore so I simply stopped eating. My teeth are incredibly damaged and I will likely need dentures in the very near future. The damage is much the same as what someone with bulimia might suffer due to the acid erosion from repeated vomiting.

Those without the disease often don’t understand that I can be feeling perfectly fine (well, as fine as I ever get) and 15 minutes later I can be in full blown Crohns attack. Sometimes the pain makes me cranky – I don’t want to snap at anyone and I don’t want to try to explain how I’m feeling because it seems like whining (at least to me). So I often withdraw and avoid contact until it has settled enough to make me feel “human” again.

And then there are the embarrassing sounds and odors and things you just don’t want to talk about with your friends much less have them experience. Digestive diseases are not something people want to talk about. I wish I didn’t ever have to think about it, much less talk about again.

This is my life with Crohns. It is the reality of it. It’s often unpleasant, often painful, often embarrassing. But if anything good has come of it, it’s this. Crohns has made me stronger. It’s made me more resilient. I’m more organized and better at planning ahead. Crohns has made me more understanding and compassionate. It has made me see, focus on, and celebrate the good. In my world as someone with Crohns, those good moments may at times seem fleeting, but when they happen, I am going to hold onto them as hard as I can.