A Crohn’s Disease Catch-up

Scroll on by people if this isn’t your thing. I know, I will return to my normal pretty things tomorrow. 😉 BUT seeing as I’m online a lot, I thought it’s only fair to sometimes keep it real! May is awareness month for Crohn’s and I’ve been asked to be of their promo this year. Soooo… I thought I’d give those who have Crohn’s or know someone with Crohn’s a little catch-up of where mine is up to. Without all the gory bits though ha!

Ok, so last year wasn’t my best year. I had 4 trips to hospital, plus a lip surgery thrown in there (a sun spot). Each time I felt it was getting harder and harder to recover from the general anesthetic. Then earlier this year I had another trip to hospital and had a bit of a collapse there which again took me a whole week to get over.

To give you a tiny bit of background… In 2003 I got an awkward fistula (I won’t upset you with all the yucky bits!) and that was a shock. Over the years and specifically last year, I now have 5 fistulas and 4 setons in place. I battle with these big time. I keep getting reoccurring sepsis as a result. This is a concern for my doctors. There’s also some narrowing of my bowel, my habits have changed a bit and I’ve recently lost 10kgs without trying. I am heading back to hospital for a couple of days end of May to have another MRI, a colonoscopy and a few other bits. There’s no long-term plan or attack on how I can stop the fistulas or really manage them. I am just going along day by day. I am on Humira injections 40mg every week. My husband loves jabbing me in the belly! Ha.

Along with the obvious Crohn’s issues, I have terribly low iron (hence an infusion tomorrow), I have swollen knees/ankles/elbows intermittently. It’s not fun and it’s bloody boring whinging and complaining all the time. I LIVE on Panadol. I run a low grade fever most of the time (infection is always in my body) and my blood pressure drops quite often. I am always dehydrated and my hair keeps falling out. I am not a fan of steroids or antibiotics so I avoid them mostly.

BUT, it doesn’t stop me in my tracks very often. I usually break it down into bite size pieces. I rest when I need to. I cancel a day of activities if things are too much I say no lots. But I also say yes to the things I love. I’ve had Crohn’s for 21 years and will have it forever, so I am not cancelling my life full stop.

I have friends and know of people with much much much worse symptoms than me. They are doing it really tough. The only reason I write about my Crohn’s is to just bring general attention and awareness to this invisible illness. Not for attention or sympathy, just simply to raise my hand and say I have this and so does 75,000 other Australians who also probably never talk about it. 96% of people with chronic medical conditions show no outward signs of their illness. This is me. You too?? But I am ok, truly, I am ok with it all.

Just a ramble and a chat today. ♥ KC.