Today, May 19, 2023, is World Inflammatory Bowel Disease Day. A large part of the reason that we started the foundation in Connor’s name was to raise awareness. What better day to share a little bit of information about IBD and Very Early Onset IBD than on this day?
Inflammatory Bowel Disease (IBD) is a term used to describe two conditions, Chron’s Disease and Ulcerative Colitis, both characterized by chronic inflammation of the GI tract. Very Early Onset Inflammatory Bowel Disease (VEO-IBD) is the term used to describe IBD when it is diagnosed in a child age 6 years or younger. Connor’s specific diagnosis is Very Early Onset Inflammatory Bowel Disease Ulcerative Colitis. Currently there is no cure for IBD. The goal for patients is to obtain long-term remission. It is almost exactly two years since we received his diagnosis, and we are no closer to achieving that goal than we were two years ago.
You might be wondering what causes IBD. In Connor’s case, we are still trying to figure that out. It is known that a combination of factors contribute to VEO-IBD including but not limited to genetics, the immune system, and the environment. Right after his initial diagnosis Connor, Jason, and I all completed genetic testing. While there was one immunology marker that was off, it was inconclusive in relation to his IBD. Truth be told, it is likely that we will never really know how our sweet baby boy came to be a VEO-IBD warrior.
Life for IBD patients is a rollercoaster. It affects the person physically, emotionally, socially, and in a lot of cases financially. Even Connor, at the age of five, is affected. From missing school, to spending extended amounts of time in the bathroom, to being a afraid to leave the house because he might have an accident – that is all only going to get worse for him as life goes on before it gets better.
This disease also takes a toll on family members. Most of you have read about the emotional rollercoaster that I ride daily. Jason isn’t too far behind me, but he holds it together much better than me. Sadie is old enough to know when something is off despite how hard we try to shield her from it. She carries the weight of that stress because she can’t quiet her big sister instincts, and she knows when something is up with her littlest best buddy. Cole and Cooper, while not as observant on the topic as Sadie, still have a hard time when Connor isn’t acting like himself or when we end up in the hospital for an extended stay.
As if the IBD symptoms aren’t enough, there are all of the extra illnesses that come along with it. VEO-IBD is an autoimmune disease, which means those who have the disease have a weakened immune system and are more susceptible to other illnesses – couple that with a five year old in preschool and you could imagine what Connor has been through since September. As I type this, he is laying on my arm struggling to sleep due to a sinus infection. He has a fever and cough that are making him extremely uncomfortable, and after another trip to the doctor today, he started his second antibiotic this month (the last one was for an ear infection two weeks ago that caused a full body rash the day he finished it).
The other part of IBD that I don’t like to focus on is the long term damage – damage to the colon and intestines, the joint and muscle pain, the side effects of the strong medication that Connor takes daily, and the potential diseases that could arise from long term use of those medications. Those thoughts are scary, and I don’t let myself go there. I can’t worry about what might happen because of medicine that he’s taking. I need to focus on how we make him better now; even if it is for a short period of time. I have said it before and I will say it again – there is nothing worse than watching your child go through something that causes them pain, and not have the ability to fix it for them or take the pain away.
My Nana always said that everything happens for a reason and that there is a good chance we will never learn the reasons in this lifetime. There is a reason God gave us the sweetest little boy when we thought our family was complete. I don’t think we’ll ever know or understand the reason that Connor has to go through all of the pain and suffering that he does daily, but I like to tell myself that it is to help our family live in the moment and to live a life lead by gratitude. If anything good came from Connor’s diagnosis, it is that our family gained some perspective – perspective on what is important in life, on enjoying our time together, on appreciating the supportive people around us, and most importantly, giving others grace because we never truly know what someone else is going through.
On World IBD Day I hope you learned some new information about this autoimmune disease and the havoc it wreaks daily on the most undeserving people. There is still so much we don’t know or understand about what Connor goes through daily, but every day we learn a little more. We are forever grateful for his medical team who are always compassionate and caring, our favorite pharmacist who always goes above and beyond, our family and friends who constantly check in and offer to help whenever or however they can, and for the opportunity to share his story and do our part to contribute to the research that will hopefully someday lead to a cure for this life-altering disease.
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