Friday, June 3, 2016

It's Time to Get Gutsy!

On Sunday June 5, my team, Awkward Guts, and I will be walking in the 5km Gutsy Walk! The Gutsy Walk is the annual walk held to raise awareness and research money for Crohn's Disease and Ulcerative Colitis. This will be my 3rd year participating.

Why is this walk so important to me? Because I have severe, refractory Crohn's Disease. Sadly, I am part of the fastest growing age group to be diagnosed with Inflammatory Bowel Disease. I was diagnosed 4 years ago this month, when I woke up one day in severe pain and started pouring blood. It took the doctors about 3 weeks to figure out what was going on, as everyone we consulted thought I just had a bad stomach bug. Oh how I wish that was the case here.

Following my diagnosis, I was started on a lot of different medications to try to get this disease under control. The longer a person has active inflammation, the higher the risks of cancer mutants showing up, so controlling the disease is key in this whole battle. Within 3 months of getting my diagnosis, my disease was so bad that it had destroyed my colon, and we were consulted about our surgical options. It was becoming clear to everyone that I would need to have a colectomy and ileostomy created for my poop.

My battle continued after my colectomy and we started throwing more potions and pills at it. Each new treatment left me with side effects that were serious enough to lead to me stopping that
treatment. I'm also not alone when it comes to side effects. For example, 20% of people who take Remicade will develop psoriasis as a result. I was in that group, my body after Remicade was 70% covered in painful, itchy spots. It makes you wonder whether the medication's side effects are just as bad as the symptom it's managing (it's not, but it makes you wonder sometimes). I also started having liver problems, eye inflammation problems, joint pain. There's so much more that goes with Inflammatory Bowel Disease other than just bloody poop.

In Canada, the "three biggies" for pediatric Crohn's Disease are Remicade, Humira, and Imuran. I've taken the Remicade and Humira, but bloodwork has shown that I wouldn't be a good candidate for Imuran. So when my Remicade infusions caused the psoriasis, we had to go for an option that hasn't been used an awful lot - Stelara injections. I've now been on Stelara for a year, and later this month we will learn if it is working to control the inflammation. Unfortunately, I've had some challenges pop up that make me think that it might not be working that well.

Those are my treatment options in Canada, meaning that we're at the end of the road here. The Gutsy walk means HOPE to me. The funding from the day will go to research programs to help find a cure for this disease. And that will go a long way towards preventing other kids from going through similar battles as I have. If you'd like to donate, please click the link below.

Jacob's Gutsy Walk Page

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