What is Crohn's Disease and why am I Writing About it?

This is a rather unusual post for this blog, but I decided today, I'm a blogger and bloggers share their personal stories.

Photo: @thejasmineintheforest

Yes, that is me above, no makeup, hair not done, wrinkles showing and I couldn't give a (bleep). That's how I felt.

Recently I've been very quiet on my social media and posting on Sydney Chic. It's not that I haven't anything to say, it's because for the last few weeks (nearly a month) I have been suffering a dreadful flare up of Crohn's Disease. If you don't know what that is, in a nutshell, my body attacks itself in the Terminal Ileum (small bowel meets large bowel) but scientists don't really know why. Other Crohn's patients have different places of attack throughout their digestive tract. Mine is confined. The attacks lead to inflammation and acute pain and other patients suffer even worse symptoms than me. I have had Crohn's Disease for 20 years and in that time I've been hospitalised twice but had a few Emergency Room visits. I'm one of the lucky ones because normally I am in remission. Each time I've had a flare I've gone on a strict diet (anti inflammatory) and that sorts me out. You can read more about this on one of my other blogs The Jasmine in the Forest.

Crohn's patients have all sorts of symptoms and many end up with colostomy bags.

My symptoms are:

  • Fatigue so bad I can sleep up to 12 hours and can't even think straight. So writing a blog post is impossible.

  • Some nights I toss and turn and can't sleep at all (especially on steroids)

  • Extreme crippling pain - so bad I can hardly walk straight

  • Dreadful night sweats (I rarely sweat otherwise)

  • Chills and the flu feeling. I can't get warm whatever I try.

It's not pleasant. In the last month I have been to the ER three times and two of those visits with a letter from my doctor asking them to see me. Each time sent home with Panadol Forte and steroids. The first visit, I agreed to take the short term steroids, the second visit the doctor wanted me to take 8 weeks of them and then wean off. I have decided the side effects of long term steroids are too horrendous and I am not doing that. I have been triumphant in fixing myself many times with my diet and rest and that's what I am doing now. The short term (5 days) are great and turn me into Super Woman, but I was given a high dose of 50mg and not told to taper off so maybe that didn't help. The reason I refuse to take long term is because of the horrendous side effects. Plus they send me ga ga! But, the third visit, I had to give in and have decided to take them with the proviso if the side-effects kick on I wean myself off them.

I have lost 3kg in two weeks.

But what went wrong? How did I get a flare up when I'm strict with my diet?

The truth is Sydney Chic! Since starting this blog I found myself on the list of many VIP events. The champagne and finger food flowed. There went my diet out the window for 4.5 years.

Now I am back to being sensible. No more wheat and eating mostly anti inflammatory foods. I'm not out of the woods yet, as I type this I feel weak and in pain, but a lot better than a few days ago. Hey it's 6.30 at night and I'm not in bed like I was last night and slept for 12 hours!

With my second ER visit they also discovered I was harbouring a serious bladder infection. I had no idea, I guess the pain of the Crohn's flare up masked anything else that was going on so they sent me home with antibiotics as well. That's a good thing and it has helped! The Panadol Forte certainly knocks the edge off the pain but you can't take that for too long so I'm cautious with that drug.

So that's why there hasn't been a lot of activity on this blog and I wanted to bring some awareness to this disease.

Then, when I feel sorry for myself, I look at my beautiful friend Amanda. Breast cancer - survivor! Only to be told a few months ago she has stage IV bone cancer (mets from breast). Please follow Amanda's journey here to give her encouraging words and support.

Visit www.crohnsandcolitis.com.au


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