By Sarah Shafer, as told to Stephanie Watson
I began having Crohn’s disease symptoms of as far back as age 13 or 14. At the time, I tried to hide my condition. The teenage years are already awkward. The last thing I wanted was for my friends and family to know how often I ran to the bathroom and how urgently I had to go.
I did eventually tell my family and I saw a doctor about my symptoms. The doctor thought it was stress-related. He assumed that I had ulcers.
When I was 25, I developed abdominal pain so severe that I almost passed out at work. It turned out to be an abscess. My doctor told me that it wasn’t normal for a 25 year old to have an abscess. That discovery led to further testing, which led to me being diagnosed with moderate to severe Crohn’s disease.
Keeping My Crohn’s Under Control
I’ve been on a couple of different biologic drugs to manage my Crohn’s disease. It took a few tries to get my treatment right. One involved a 4-hour infusion, which interfered with my job. I had to take a day off of work once every 5 or 6 weeks. The one I’m on now turned out to be easier because it’s an injection I give myself.
My doctor, Raymond Cross, MD, at the University of Maryland, has helped me figure out which combination of medications works best for me. He kept up with the research and gave me references to read. I feel like our partnership has made a big difference because it has kept me engaged in my own care.
By monitoring my symptoms and staying up to date on the latest research, I’ve learned how to control my Crohn’s flare-ups. Today I know how to stick with my treatment plan and manage my triggers.
Fine-Tuning My Diet
About 8 years ago, I started to read research on the link between food sensitivities and Crohn’s disease. For 3 months, I cut out dairy and gluten to see if that helped my symptoms. Then I slowly reintroduced these foods, a little at a time.
I came to realize that dairy is OK for me in limited quantities, but gluten is a consistent trigger. I cut gluten out of my diet, and I’ve avoided it for about 10 years.
My disease is under pretty good control, but whenever I get stressed, the frequent urge to go to the restroom comes right back. So I try to keep my stress in check.
I find that running is one of the best stress relievers, but it can also be a problem for me. It isn’t always easy to get to a bathroom when you’re on a jogging trail.
I’ve run seven marathons, but I have had to get creative. I either find trails that have restrooms along the way, or I run on a treadmill so I can stop and go the bathroom whenever I need to go.
Sticking to my medication regimen is also key to managing my symptoms. I take a pill every morning.
I also give myself an injection of the biologic once every 10 days. At first, I played around with the frequency of the injections. I started with one injection every 14 days. When that wasn’t enough, I went down to once every 12 days, and now I space the doses 10 days apart.
I can tell when I need my injection. As the day gets closer, I become more sensitive to dairy foods and the frequency of my bathroom visits increase. So I don’t mess around with the timing.
I have to be careful with my medication when I travel. Because the medicine has to be kept chilled, I keep my schedule in mind when planning a trip. I either have to bring a cooler pack with me or make sure that I have somewhere to keep the medicine cool until I reach my destination.
A Good Support System
Managing Crohn’s flare-ups is easier when you’ve got a strong support system. Having someone you can talk to about how you feel is really important. All those years when I was too embarrassed to discuss my symptoms with anybody was tough on me emotionally, as well as physically.
My husband has been extremely supportive. Not everyone you meet will be willing to change their diet and lifestyle to accommodate your needs, but he has.
It makes a big difference when the people in your life are supportive and they don’t make you feel like you’re impeding on their lives by having to make accommodations, like avoiding certain foods or stopping multiple times to use the bathroom during a road trip. When the people around you are supportive, it can make a big difference in how you feel and how well you manage your Crohn’s disease.