Crohn’s Disease Doesn’t Define Me

By Christina Difeo Petrella, as told to Michele Jordan

I’m from a large Italian family of five where food and love were so important. I am the youngest of three children and the only girl. My two older brothers were very protective of me. As a child, I loved sports. I played field hockey, lacrosse, and I ran indoor track. When I was 5, I started skiing and loved being on the slopes with my dad.

After graduating from business school, I worked for a publishing company. I loved it, but in addition to my love for sports, I knew I had a passion for cooking and baking. My great-grandfather had a bakery, so I felt like it was in my genes. I was obsessed with Martha Stewart.

This is why I didn’t see Crohn’s coming. I always enjoyed food. While I worked full-time after college, I went to pastry school at night. My co-workers loved me because I was the girl who brought delicious food to work the next day. I had no clue that my relationship with food would change.

Is It Crohn’s?

My active lifestyle remained with me as an adult. I worked out regularly with a trainer and ran marathons. One day, I was home dealing with a torn ACL when I started having weird symptoms. My stomach was bothering me and I was going to the bathroom — a lot. I thought it was a stomach bug and tried to just ride it out. Then, my joints started hurting and my legs and feet began to swell. I felt something was wrong but wondered if it had to do with my recent surgery.  

I have a high pain tolerance, but my symptoms were getting worse. My dietitian friend suggested I try a low-FODMAP diet (one with food restrictions to help certain digestive issues). We tried to troubleshoot and nothing worked. I couldn’t even eat salads, which I loved. Really, it seemed the only thing I could eat was bread or rice.

A Mother’s Dilemma

One of my worst days with my symptoms was right before my Crohn’s diagnosis. My doctor put me on two strong antibiotics to see if they would help with my stomach issues. I was still nursing my son at the time, so before I started taking them, I called the pediatrician to see if it would be OK to nurse while I was on medication. She advised me not to, which made me extremely sad. I was feeling so sick and exhausted. Getting out of bed was a struggle, but nursing my son was a big source of joy for me. The idea of having to end that so quickly made me upset. I broke down. I cried for a while. I wasn’t ready to stop nursing him and didn’t think it was fair to stop without weaning.

I called my doctor just to see if there was something else I could do. At that time, he suspected it was Crohn’s and told me I could hold off on the antibiotics since they wouldn’t be much help. He said I could wait to see what the CT scan showed. I can’t tell you how relieved I was. I cried tears of joy. Looking back, I’m glad I advocated for myself and my son and that my doctor was open to hearing me.

Finally, an Answer

I went to several doctors before finally getting diagnosed. By the time I got to a gastroenterologist, I had lost weight, was having joint pain, and was so exhausted that I couldn’t get out of bed. I told my doctor  I had the same symptoms when I was pregnant with my third child. At the time the doctor thought it was an infection. Now, I wonder if it was a Crohn’s flare.

The doctor ran a variety of tests and did bloodwork. But a CT scan that showed inflammation in my digestive system finally confirmed I had Crohn’s disease. While Crohn’s wasn’t on my personal radar, I wasn’t totally unfamiliar with it. My older brother was diagnosed years prior, so I felt a little prepared.  Still, the diagnosis seemed grim at first. I cried all the way home.

My New Life

This new life has been an adjustment for me. I’m always on the go, but I’ve learned how to slow down and pay attention to my body. When I first heard I  would need to be on meds all my life, I was scared. It was heavy. I don’t like taking medications, but I’ve been able to talk to my doctor about tapering down my meds depending on whether or not I’m having flare. I’ve had a good dialogue with my doctor, and I’m glad he’s supporting me.

I’ve had some awkward moments with friends and family when they don’t understand my new eating habits, but overall they are so supportive. Little things still pop up to remind me. Recently I was out to dinner with friends, and I had to pass on the sparkling water. I just said, ”Oh yeah. I don’t do well with this.”

Overall, I have a great group of friends and family who understand. Many of them are dealing with their own health issues. The biggest challenge comes when I go out to eat and the restaurant staff doesn’t understand why I’m ordering a certain way. I’m not a diva. This food I’m asking about can actually hurt me. I don’t think they’re trying to be mean; it’s just a lack of education about certain diseases.

One tip: Try to look at the menu before you go out to eat or call the restaurant ahead of time to ask questions.

A Friendship With Food

At home, I do a lot of meal planning. I add lots of vegetables to every meal. I have to plan. I know there isn’t much evidence that food can cure Crohn’s, but I found some information about a plant-based diet and how it may help gut health. I’ve always tried to eat healthy, but now it’s more important. I don’t eat a lot of processed food. I’ve cut back on dairy and I’m feeling better. I’m trying to eliminate sugar, which is tricky for me as a baker. But I’ve found some sources for cooking without a lot of sugar.

My brother with Crohn’s has also helped me with my eating habits. I’ve found some healthy recipes that I’m trying so I am still able to enjoy my passion for cooking. I’ve started a food blog on Instagram, and I’m working on a cookbook. I’d love to have my own bakery or restaurant one day. I’m the same Italian girl who has a love affair with food. I’ve had to make some changes, but I still enjoy creating new recipes. I still love the Food Network.

My goal is to set an example for my family. I’m trying to show in my blog while there are so many things I can’t eat, there are also a lot of things I can eat. As a wife and mom of three, I’m teaching my family to enjoy food and not see it as good or bad. It’s all about how it makes you feel.

Grateful Each Day

I’ve had a few flares throughout my life, but I’m so grateful that I didn’t get diagnosed until I was older. My heart goes out to people who are diagnosed earlier in life. Medications will be a part of my life from now on, and I’ll have to get colonoscopies and other tests more often. But my brother has been off medicine and without a flare for 15 years, so I’m hoping to have the same success. I guess I’m still trying to keep up with my big brother!

These days, I’m still exercising and staying active. I want to do marathons again when I’m ready. In the meantime, I’m taking a food photography class to help with my food blog and website, and my friends want me to open a restaurant. Maybe I will, or maybe I’ll have a cooking show one day. Until then, I still enjoy just cooking for my family. It’s my legacy.