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.


  • Linda

    Thankyou for sharing . You are an inspiration. I love your blog. My friends 22year old daughter battles chrohns and I have witnessed some terrible episodes of illness and surgery in her life and like you she gets on with it not defined by her illness. The humira keeps it under control and she has been on it since under 18 years of age – usually not a treatment option at that age. She’s travelled around the world skydived from planes, experienced white water rafting and bungee jumped and met a wonderful young man in Africa now her boyfriend – he lives in England! She is second year at uni on her way to becoming a nurse., while holding down a job. … her illness unseen to others who dont know her, she is forced to take time out as infections etc arise. . We never know what we are capable of , illness certainly presents challenges to our dreams and goals. I have so much admiration for you and everyone who suffers ongoing illness who one way or another overcomes obstacles to reach goals and enrich the lives of those around them. Good luck with your upcoming treatments Katrina. I will continue to follow your journey and be inspired.

    • Katrina (author)

      I am so happy to hear this. What a great role model she is herself! Best wishes to your family. X

  • Mary

    Wow you are such a strong lady good luck x

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