Every day across the country, more than one a half million people live with some form of irritable bowel disease. The struggles of these folks can vary immensely, with the goal of most to find some normality within the disorder.
Recently, we’ve come across a handful of really incredible and inspiring stories, so we thought we’d share a few with you.
Tony, a Crohn’s patient from Pennsylvania
For me, Crohn’s is one piece of a very complicated medical package – I also live with epilepsy, Celiac disease, and a rare, systemic genetic connective tissue disorder called Ehlers-Danlos Syndrome, and I struggle daily with depression. Suffice it to say, I manage A LOT when it comes to my health and overall well-being.
There’s something about living with a disease like Crohn’s that has altered my entire perception of myself and my place in the world. When I was diagnosed, I stared death in the eyes. Crohn’s, forever complicated by my entire medical mash-up, nearly killed me. It ravaged my body before more treatments were developed. At the time, infliximab was the only biologic therapy on the market, and after a 13 year run with it, it was no longer helping me. Surgery was necessary and as a not yet out of the closet gay man, I feared I would never live an authentic life. I feared I would die before I could ever tell another man that I thought he was cute.
There is absolutely nothing easy or carefree about living with Crohn’s. It’s painful. I’m 33 and I still have accidents. I am on a very strict medication regimen, and there is not a decision I made that Crohn’s, and my health in general, does not directly influence. There are no days off for me or the other 1.6 million Americans living with IBD. This disease is harrowing, but I have managed and found joy in life and, after all of it, I wouldn’t change anything.
I’m often asked why I wouldn’t change life with something so debilitating as Crohn’s disease. And, for me, Crohn’s has caused issues with my skin, kidneys, joints, and, as new research suggests, probably doesn’t help my depression. It’s because living with Crohn’s has taught me so much about my own will to survive and my abilities to rise up against all odds.
I’m strong. I’m resilient. I’m capable. I do not know if I would be the strong, witty, and humble person I am today without this disease.
Tyler, an IBD fighter, member of NCCL
My IBD is something I have constantly tried to keep on the “back burner,” to not focus on it and live my life without any limitations. For years this worked just fine until recently, when complications arose just days before the start of the fall semester.After undergoing several tests and surgery, I was faced with the difficult decision of whether I could return to school for the semester or to take off.
My body and my mind started on opposing sides, as my mind was set on returning to school but my body was not ready to do so. After much contemplation, they came around to agree on a simultaneous decision to take the semester off. Despite it not being the decision I hoped for, placing my health as a priority was the best decision I’ve made in a long time.
After all, if we don’t have our health, what do we have?
I think this is an important point that is easily overlooked in the younger generation. We are on the timeline of school, a career, the future, etc. that our health can easily be left on the “back burner” when it shouldn’t be. Everything going on in life can wait. Take the time for your health when needed. Regardless of what IBD puts on hold in your life, you will always bounce back and one up the disease.
Lauren Zirfas, a Crohn’s patient from Kansas
I was a healthy, happy child until the age of four. I loved to ride my bike, swim, sing, but most of all I loved to dance. Then things changed. I was constantly tired, had severe anxiety, always complained of a tummy ache, my skin was very pale with huge, dark circles under my eyes, I used the bathroom A LOT, and I had quit growing. During the next few years I had every blood test possible, yet nothing showed up.
When I started school, I was so tired that I could barely make it through the day. I would come home and go straight to my room to take a nap. My mom and dad woke me up to go to dance class, eat supper, or wherever we had to be. Once, I fell asleep at the table in my plate, like a baby does; and another time, I fell down the stairs because I was so exhausted. I couldn’t keep up with my brother, Conner, or my friends at the swimming pool. After 30 minutes at the pool, I would ask my mom if we could go home. I even asked my parents if I could quit dance class because I just couldn’t stand two hours of dancing after a whole day at school, and dance was my life! My mom and dad were very worried because a normal kid doesn’t act like that. I am the youngest of five, so they should know.
Finally in March of 2015, I was referred to Dr. Hattar. She had me limit the amount of dairy products that I ate each day and took away cow’s milk, but my symptoms didn’t go away. On May 4,2015, I had an endoscopy and a colonoscopy so Dr. Hattar could look inside of me. That was the day I was diagnosed with Crohn’s Disease, just two weeks after I turned eight years old.
I began receiving the Remicade Infusion ten days later on May 14, 2015; and have been receiving them every six to eight weeks since. My family has had to make a few changes at home since I was diagnosed with Crohn’s, but it hasn’t been too bad. Now I am able to keep up with my brother and my friends. In the past year, I tried out for Ballet Wichita’s The Nutcracker and danced as a mouse, cheered for my brother’s football team, played basketball and softball, and enjoyed my true love of dancing by training/going to class every week and dancing whenever my feet hit the floor. I am now growing like a normal, nine year old kid should, thanks to Dr. Hattar.