“To anyone that knows someone with any disease, please be kind, because everyone you meet is fighting a battle you may know nothing about.” – Libby’s story
The year 2004 changed my life forever.
I’ll never forget the day a specialist called and said, “You have Crohn’s disease.” I was just 24. I felt like my heart was broken, and time stood still for a while
I had been having tummy issues for years – even back in school. I wasn’t super sick, but I’d always have a “funny” tummy. The school nurse would be constantly sending me home. By 2004 I was practically living in the bathroom.
It took around a year or so to be diagnosed. I went to GP’s and was told its probably IBS and anxiety and that I needed to watch what I ate. I started to drop a lot of weight. I tried the FODMAP diet, going gluten-free, going lactose-free, seeing a naturopath – you name it. I took it, and I tried it! But nothing seemed to work. By mid to late 2004, I became seriously unwell – I dropped to 43kgs and couldn’t even sip water.
Eventually, I was hospitalised for weeks. After countless tests, I was finally diagnosed with fistulating Crohn’s disease. I had ulcers from my throat all the way through my digestive tract, an abscess the size of a golf ball, and four fistulas that constantly leaked faeces, mucus, and blood.
The diagnosis was life-shattering. It was like the world just stopped. I remember sitting on the floor, numb, crying my eyes out.
It was then I began wondering what my life would look like.
And one of the biggest questions was: Can I have children? The disease and medication took a massive toll on my body. Treatment was trial and error. Some medications helped, others made me feel worse. Some days I couldn’t (and still can’t) get out of bed. Even now, some medications work, and some don’t.
Finally, in 2006, we found out we were pregnant! That day was one of the happiest days of my life! When I was pregnant, I opted to go off all medication and treatment, as I didn’t know if it could affect the baby. I got terribly sick and could hardly leave the house! But finally, in August 2007, our pride and joy was born healthy and happy! The next day I went back on all my medications and began treatment again.
This disease has taken a huge toll – on my body, mind, soul, and family.
I’ve lost count of the number of surgeries, scopes, tests, and hospital stays. It forced me to give up work. I’m constantly exhausted – no matter how much I sleep, the fatigue never leaves. I miss out on a lot of fun, family outings, and special moments because I’m too sick – or stuck in the bathroom.
It takes a very big toll mentally. Some days have been very dark, and it is extremely hard to climb out of them. Some days it’s just trying to survive through it hourly. The financial burden and pressure weigh heavily on me, as the cost of medication, doctors, specialists, and hospital visits are all so expensive. And knowing I can’t contribute, but my health is what’s draining the bank account, makes it even harder.
It’s difficult to explain Crohn’s disease to someone who’s never heard of it.
I always try and keep it short and say, “It’s an autoimmune disease, and I can’t digest food properly and have diarrhea.”
The comments like “you don’t look sick” or “there’s always someone worse off than you” really makes me irritated.
You don’t walk daily in my shoes or on the road I walk down. You don’t see the endless silent tears and lying on the floor in excruciating pain. I have throat ulcers, which cause my throat to bleed, and I can’t eat. I am forever using a heat pack due to pain, and now I have developed “toasted” skin on my stomach, which now has irreparable damage that cannot be fixed. There are also some other complications with my Crohn’s disease that can’t be fixed.
To anyone that knows someone with any disease, please be kind, because everyone you meet is fighting a battle you may know nothing about.
I am so lucky to have a strong family and friends network around me that continues to show unwavering love and support.
Within my family now both my cousins have been diagnosed with Crohn’s disease, and our great-grandfather also had a third of his bowel removed. So, it is very prominent within the genes. And what works food and medication wise for my cousins, doesn’t work for me and vice versa.
My specialist and health care team are so caring and brilliant, and without these networks, I don’t think I would be here today. I will fight this to the end! Some days are just better than others, and some days it’s all a disguise.