Living with chronic illness

I'm kind of a private person, but lately I've been thinking that people might understand my life more if I talk about what it's like for me to live with Chrons Disease.

Chrons is a digestive disorder that can affect not only your entire digestive system (in my case, I'm affected from my mouth all the way down) but also other major body systems. In my case, it affects my joints and skin as well.  I was diagnosed with Chrons thirteen years ago, when I was thirty three and was at a low weight of eighty eight pounds, but I'd had symptoms for many years prior to that.  The only way to diagnose Chrons disease is to have a colonoscopy, and because Chrons patients have a higher likelihood of developing colon cancer, I've had four.  I am constantly anemic.

Chrons is a chronic disease with no real rhyme or reason why or how it strikes, other than we know it can run in families. (My aunt has it, too.)  I can be fine for a long time, and then get a flare up. A flare up will land me in bed for days or weeks, unable to eat, unable to function.  I have not been off medication at all for the last thirteen years. Until about a year ago, I took all oral medication.

There are a ton of medications for Chrons, but unfortuantely, most don't work that well, at least for me. For about two years, I spent much of the time feeling awful, and my doctor finally threw down the gauntlet.  She wanted me to start IV infusions.

IV infusions up the ante dramatically. They're a whole new ball game.  For one thing, they take up far more time than oral medication does, obviously.

Right now, in fact, as I type this, I'm in the hospital getting infused.  I come every eight weeks to spend a morning here.  It starts out with getting my vitals taken.  I have to swear up and down I haven't been sick because infusions are dangerous if you have been.  Then I have to "pre med," which means taking an an anti allergy and Tylenol to ward off effects of the infusion medication.

They set up an IV. I'm told I have great veins but it still hurts as they poke around, trying to find one that will work.  They run saline as my infusion meds are mixed at the pharmacy.  While the actual medication I take is a two hour drip, between all the pretesting and saline dripping and then flushing the line at the end, I'm here about three to four hours.

Infusions make me tired. I'll probably go home and take a nap this afternoon.  The medication lowers my immune system's ability to fight infection. This winter is the first winter on infusion, so I'm extra paranoid about getting sick, because I've been warned that a cold can easily turn into a hospital stay for someone on this regimen.

The infusions are helping.  For the last few years, to save me from the constant flare ups, I was almost constantly on prednisone. I haven't been on any prednisone now for four months, and I can count on one hand the number of days I've felt bad since the fall.  So they are worth it.