Coping | IBD | Ostomy
My name is Charis Kirk. I’m 31 years old and I have a permanent ileostomy as a result of severe ulcerative colitis. I’m very straight-forward and I believe strongly in providing a realistic, yet optimistic, point of view on my IBD and ostomy experiences. So far I’ve had 8 surgeries in 2.5 years and countless ER visits and hospitalizations. I’ve been on almost every IBD medication out there. I know what it’s like to feel angry, desperate, lonely, and hopeless and it’s because of these emotions that I’m able to connect with all different kinds of people living and struggling with IBD or ostomies.
Adam: Why did you decide to start blogging about IBD?
Charis: I decided to start blogging about IBD and ostomies towards the end of 2011 because I felt disappointed that the websites, Facebook pages, and blogs I came across were primarily negative and seemed to encourage a depressed sense of one’s self and physical identity. I also felt frustrated that many of these same resources were being run by individuals motivated by self-promotion or who weren’t interested in interacting with page members, or the rest of the IBD and ostomy communities online. Because of my frustrations, I decided to create my own blog, Full Frontal Ostomy, as well as a Facebook page, My Doctor Knows Me Best From Behind: IBD and Ostomy Support. I use these sites to blog about my IBD and ostomy experiences and thoughts, and to also connect directly with others who are going through difficult times or who need reassurance.
Adam: What has been the best discovery you’ve made in the past year in terms of your disease?
Charis: Over the past year I’ve made many discoveries about my disease and my body. I’ve learned to NOT trust my disease or its manifestations, but to instead trust my body to tell me when something isn’t “right.” I’ve learned to recognize warning signs that prior to my diagnosis would’ve been written off or explained by diet changes or emotional distress. Most importantly, I’ve learned to trust my instincts and make wise decisions regarding my healthcare. I tried for two years to make my jpouch work but when I realized I was getting sicker and sicker, I chose to go back to a temporary ileostomy. I did that to save myself and to provide relief to my family and fiancé, whose lives revolved around my disease. I gave up my old identity and moved forward with a new one. I’m glad I did.
Adam: Besides your website, what else keeps you excited to wake up each morning?
Charis: Now I’m truly excited to wake up each day to see if I am still pain-free. I no longer take a single good day for granted because I know what it’s like to wake up day after day and see nothing but darkness and feel nothing but pain and despair. I appreciate things like feeling hungry or thirsty and being able to eat and drink what I want (for the most part – I’m still working on vegetables and fruits!). I appreciate not taking 20-30 pills a day. And I appreciate my body. I can at least look in the mirror now and not burst into tears about my scars, my bloat, or my ostomy bag. I can look at myself now and feel that I look pretty. I have self-confidence again. And that motivates me even further to help others reach the same conclusion about their own bodies.