Monday, June 22, 2015
Gutsy Walk 2015
Poop. There I said it. The first thing that comes to mind when someone mentions Inflammatory Bowel Disease, Crohn's Disease, or Ulcerative Colitis is poop. And lots of it. Never before have I taken such a significant interest in my kid's poop, and I certainly never thought I'd be dealing with so much of it. Yet poop is one tiny part of this huge disease. Along with poop comes malnutrition from the body's inability to absorb nutrients. There comes the fatigue from not having the energy from the food consumed. Then there are the things not even related to poop - the joint pains, the side effects of medication that can leave a person completely bedridden, the eye pains and inflammation of the blood vessels in the eye, the constant nausea, the infections... Along with all of that comes the isolation from decreasing social activities, the lost income from days missed of work (or in our case, lost learning opportunities from school), the anxiety of worrying what comes next, the stress of living with an ostomy bag... There's A LOT more to talk about when it comes to Inflammatory Bowel Disease other than just the poop. That's why the Gutsy Walk means so much to us.
The Gutsy Walk is the annual fundraising walk to raise funds for Crohn's and Colitis Canada. The one thing we definitely know about living with Crohn's Disease, is that research is critical. For us, research is everything. Jacob's been through a ton of treatments over the last 3 years. He reacted to Sulfasalazine (so can't take any of it's cousins either), became steroid dependent (so we need to be ultra-careful with steroids), can't take Imuran, failed Humira and Remicade (twice), and couldn't stop vomiting on methotrexate. Those are all of the commonly used treatments for Inflammatory Bowel Diseases. Jacob has now been started on Stelara, which although approved for pediatric psoriasis, it is not approved as a Crohn's Disease treatment on it's own. Recent research has suggested that Stelara may be effective in a certain population of Crohn's patients, but more research is required to officially claim it as an effective treatment.
Jacob is 11. He has a very long life ahead of him during which he'll always live with this disease. If this current treatment fails, there needs to be research to have other treatments. Better yet would be a cure, but if not a cure, there needs to be more effective treatments available. In order to be able to gain the attention these diseases require, people need to be able to talk about them. And that means people do need to talk about poop.
Just a quick shout-out to @VeganOstomy, Eric, whom we met during the Gutsy Walk and was able to share Jacob's journey with him. Eric does a lot of blogging work within the IBD and Ostomy community. And thanks to Jen, our wonderful friend also living with Crohn's Disease who walked alongside us, just as she has done throughout this whole crazy 3 years. You guys are both Advocacy in HealthCare heroes :)