Symptoms at Diagnosis:Diarrhea, blood in stool, stomach cramps, weight loss
Details of Surgery:Permanent colostomy, colon removed 2002, resection 2003, hernia surgery 2017
I was first diagnosed with Crohn's disease at age 14. Doctors put me on high levels of steroids to attempt to reduce the inflammation and painful gastrointestinal symptoms I was experiencing. It helped for the short term, but the side effects of steroids on my body as an adolescent teen entering high school seemed to be worse than the gastrointestinal symptoms. I missed lots of school due to illness and doctor's appointments. At my worst I was unable to participate in school activities like sports.
I finally started commuting to Chicago (I grew up in Peoria, Il, a smaller town in Central Illinois) where doctor's seemed more educated on Crohn's disease treatment. For years we tried every treatment under the sun. Many didn't work or had very negative side effects on me which nearly killed me themselves. My junior year of college I spent my spring break at the Mayo Clinic in Minnesota, which was filled with intense medical procedures and scopes, but it ultimately saved my life, as they discovered my colon was diseased beyond repair.
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“Despite all the pain, recovery and adjusting to life with a permanent ostomy …I feel stronger, happier, and healthier than I've ever been in my life.”
If I wanted any quality of life again, my colon would have to be permanently removed. The summer before my senior year of college I returned to the University of Chicago Hospital, had my colon removed, and now have a permanent ostomy. The recovery wasn't easy, and the 20 years I've now been living with an ostomy have come with their own challenges and setbacks. In total I've had five major abdominal surgeries to remove scar tissue, repair hernias, and resection my small intestine. Despite all the pain, recovery and adjusting to life with a permanent ostomy, I'm happy to report that at 40-years-old, I feel stronger, happier, and healthier than I've ever been in my life.
Despite my chronic illness, most days I'm on the go! Life is too short. I was a social worker for 15 years in the city of Chicago helping abused and neglected children and families, but it was brutal for my own physical and mental well-being. Today I am the co founder and chef of Nude Dude Food, a health and wellness brand comprised of fitness experts and chefs who cater private events in Chicago and around the country. Starting my own business wasn't easy, but it was the best decision for my health. I work very hard still, but have the opportunity and freedom to take care of myself first. Most days start with walking my pitbull dog, Olive, then a session at the gym or Studio Three yoga studio. Now that I'm thriving with my ostomy, I have this crazy internal drive to stay active and physically fit.
“Living with a chronic illness isn't easy, and there will be many ups and downs, but taking care of your mental health is crucial.”
Tips for other IBDers, never give up! Stay positive and do not let your disease define you. Might sound cliche, but I firmly believe it. Living with a chronic illness isn't easy, and there will be many ups and downs, but taking care of your mental health is crucial. Seeking help from a therapist and having support of friends and family is also critical to having a healthy relationship and understanding of your mind and body. However, there is nothing like the support and bond between others with the same disease and symptoms. Sharing experiences between fellow Crohn's disease patients or ostomates, is by far the biggest support I've ever received. I'm so happy I found this platform to connect with others like me.
My life has changed in sooooo many ways, for the better and the worse, but honestly the good FAR outweighs the bad. From a mental health standpoint, going through intense pain whether from surgeries or symptoms, it really showed me how strong I can be. Now when I have a bad day, I quickly reflect on when I was feeling my worst and remind myself that if I can overcome a severe chronic illness, I can get through the day, not worrying about small things, like traffic, a bad work day, bad weather, etc. Life goes on!
When I am having a bad day there are several things I like to do, and even when having a good day, I lean on these coping skills I've developed over the years. I mentioned it before, but health and wellness is very important to me and now that I feel my true self, I want to embrace that and celebrate my body. Physical activity whether it's working out in a gym, taking a yoga class, walking my dog, or tossing a ball with a friend, always makes me feel better! I also really enjoy music, all types, depending on the mood or the situation, but music has a fantastic way of expressing emotions that often I can't myself.
I'm an open book, and love to connect with others with IBD, ostomies, you name it. Follow me on Instagram @rvanvoorhis.
I was first diagnosed with Crohn's disease at age 14. I missed lots of school due to illness and doctor's appointments. At my worst I was unable to participate in school activities like sports. In my junior year of college I spent my spring break undergoing intense medical procedures and scopes, but it ultimately saved my life, as they discovered my colon was diseased beyond repair. The summer before my senior year of college I had my colon removed, and now have a permanent ostomy.