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My target 150kms
I'm undertaking the Live Fearless Challenge again this September
Crohn’s disease and Colitis (collectively know as Inflammatory Bowel Disease) is an Autoimmune disease, where the body attacks the digestive tract, causing inflammation, ulcers and infection. It is commonly confused with IBS or food allergies/intolerances. Dietary changes can help lessen certain symptoms but no dietary change can cure IBD or make it go away. It has nothing to do with the food we eat, it has everything to do with a faulty Immune System.
I was first diagnosed in October 2018, and it wasn’t until March 2020 until I finally went into remission. (When inflammation settles and symptoms aren’t as debilitating) But even whilst in remission, I still experience symptoms from my Crohn’s every day, and I will for the rest of my life.
Before remission, I spent an entire year and a half being in constant agony, and needing 20-40 trips to the toilet each day, on average; And I was somehow still going to work to be able to afford my rent/bills/specialists appointments/medications and hospital stays. There wasn’t a single day that went by in that period where I didn’t experience debilitating symptoms. It was the hardest thing I’ve ever had to do in my life.
Constant cramping, bloating, abdominal discomfort and pain. It felt like there was a clamp on my intestines and the pressure in my abdomen was so intense sometimes it felt like I was going to explode. I was having 20-40 bowel movements a day. With each trip to the toilet taking what seemed like forever. I was never able to empty my bowels properly due to all the inflammation, and trips to the toilet were extremely painful. 80% of the time was bowel issues, and the other 20% of the time was nausea and vomiting. I was losing disgustingly large amounts of blood everyday and was extremely malnourished. Which obviously then caused other problems like iron deficiency, anemia, extreme fatigue etc. The intense inflammation in my digestive tract sparked inflammatory responses throughout my body. My joints ached, my muscles ached, I would get headaches and my vision would sometimes become blurry from inflammation in my eyes. I became scared of food, and would sometimes go days without eating, which never made any difference to my symptoms. I’d still be having 20-40 trips to the toilet each day, just to pass blood and mucus from all the infection in my digestive tract.
On top of all this, I was putting up with horrible side effects from all the drugs I was on, drugs that weren’t making any difference at all to my condition. My skin was thinning, I was losing my hair, fluid retention, I constantly felt swollen everywhere, I developed the typical moon face from steroids and chemo agents, I would lose weight rapidly, but then just as rapidly put it back on, thanks to the steroids.
A year and a half of trying this and trying that, and getting nowhere. It wasn’t just psychically exhausting, but it took a big toll mentally too. You’d think after being diagnosed with a disease and seeing a specialist, that the treatment plan they give you would help. But that isn’t the case with Crohn’s/Colitis, as 1 out of 5 people don’t respond to the treatments currently available.
After trying about 20 different combinations of drugs, and spending over $5,000 out of pocket (After Medicare, Concessions and Private Health rebates) I finally found solace with the Infliximab infusions, which was a last ditch effort. Infliximab is an Immune Suppressant that completely shuts down your Immune System and carries with it an extensive list of dangers, (especially in the midst of a worldwide pandemic) hence why this treatment is only used as a last resort before more extreme measures, aka: Bowel Removal. These infusions now need to be done in hospital every 8 weeks for the rest of my life.
Now that I’m in remission, I am surprisingly feeling worse in my psyche. I’m physically feeling better, but I know this isn’t the end. I know my body could start attacking itself again at any given moment and that I could develop antibodies to the Infliximab, rendering the effects of it useless. I know I have the rest of my life with this disease to go, and that I’ve already came very close to losing my bowels, which can still be a reality further down the track. Statistically, most Crohn’s/Colitis sufferers will eventually need a colostomy bag. Especially if they’ve been diagnosed so early in life.
So every single day now is literally like living in constant fear.
This is why I am taking part in the “Live Fearless Challenge” again this year, because Crohn’s/Colitis sufferers truly do live in fear of their own body’s everyday.
We need to find a CURE not a MANAGEMENT, and we need to find one ASAP.
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