IBD Icons, sponsored by Janssen Biotech, makers of Remicade is a contest looking for more Casey Abrams, people who have overcome their IBD. The contest consisted of writing answers to three questions. The finalists are now being voted on by the public.
Here’s my story that I submited:
How has ulcerative colitis or Crohn’s disease affected your life? (400-word maximum)
I am no stranger to adversity after having my appendix burst at four months old and losing a good deal of my hearing at one year old from spinal meningitis. As a teenager, I think the last thing I wanted to do was accept that yet again something else was wrong with my body. I had frequent abdominal pain and chronic diarrhea that my family and I thought was the flu. I just wanted to play hockey and make my high school’s varsity team.
After several months of being unable to control my bowels, which affected my social life, school attendance and hockey performance, I went for a colonoscopy in Boston, MA. At the age of seventeen I was diagnosed with an inflammatory bowel disease that would change my life forever.
At the time, I didn’t realize that my failure to thrive physically was a result of Crohn’s disease. I remember vividly my coach yelling at me in front of everyone in the weight room for not being able to bench press as much as the others. Hockey was never the same after that.
The medication I was taking wasn’t working and being the stubborn teen and young adult I was, I pushed myself through years of pain and embarrassment on a daily basis.
Eventually, I found a change in lifestyle to be the best approach for me. I enjoyed newfound confidence and health that lasted about one year. Then I began to experience partial bowel obstructions. That was the darkest time in my life, often having suicidal and violent thoughts to work out the frustrations I had.
As more time passed, I came close to needing surgery to correct the obstructions, but decided to see a Naturopathic doctor as my last resort. The recommendations she made saved me from needing surgery.
I couldn’t enjoy my health while seeing others suffer from IBDs and decided I had to pay it forward. I started a documentary film to help others overcome their IBD using natural healing protocols.
Along the way I have learned not to fight against the disease, but to embrace it as my guru, my teacher in life. It has taught me to be more compassionate of others, to be thankful of the small things in life and to listen to my gut. Now that I am listening, my health improves each year.
What is your most prized accomplishment, one that demonstrates how you live beyond your disease? (300-word maximum)
While having Crohn’s disease I am most proud of “WANTED: Crohn’s End”, my documentary I am currently producing as a one man crew. I am on a mission to tell the stories of those with inflammatory bowel diseases and how they are overcoming their condition to live awesome lives. They are a real inspiration for me and will be for many others.
Each trip I take is health risk because I use a specific diet that is hard to maintain when living in hotel rooms and eating out. Because I don’t have a crew, there is a great deal of stress I deal with on each interview trip when managing my film equipment, interview schedules and my health all at the same time.
It’s not uncommon for me to have a slight relapse in symptoms towards the end of a trip. When I get home, I recuperate and am symptom free within a day or two once getting back to my usual health routine. But I can’t rest for long.
The community supporting my film on Facebook and Twitter grows each week. They eagerly await what new information I have learned that can be shared with them. Many are struggling daily despite having top notch doctors, the best medical insurance and the latest medications. I hope my film can help offer additional solutions.
Already, I have helped several people achieve remission when they struggled previously. I know my film can have a huge impact for the roughly 60 million in America with a digestive condition including IBS, gluten intolerance, celiac disease, crohn’s disease and ulcerative colitis.
What message would you send to other people newly diagnosed with ulcerative colitis or Crohn’s disease or those struggling with their condition? (300-word maximum)
I offer the following:
- Do your best to have as much fun as you can and laugh more than you ever have. Think of it as a nice massage for your intestines!
- Make sure you have a capable team of doctors to advise you, not order you, on your treatment options. I recommend at least one gastroenterologist and one naturopathic doctor with you at the head of the decision making table. You always have final say in your treatment.
- Find someone you can talk to about how you are feeling so you can get it off your chest.
- Learn to listen to your body. The symptoms are messages trying to communicate with you. If symptoms worsen after eating specific foods, drinks or medications, don’t ignore that, learn that maybe it’s not for you.
- It’s important to stay positive. Focus on what you can do, not what you can’t.
- Keep a health journal where you write down everything you put into your body, food, drinks, medications, supplements, and so on. Include how you feel physically and emotionally. You may be able to review these each week and begin to notice patterns that can help you tweak your health.
- Seek out others who have overcome their IBD. Learning from other successful patients is giving me the best health I’ve had since before my diagnosis.
- Don’t fight it, embrace the hidden gifts your disease offers by learning how to turn crap into a garden and misfortune into opportunity.
- It’s not the severity of the disease that matters, it’s the determination and effort of the person that matters.