By Caitlyn Pilkington Smith
Fulfilling life with chronic illness; group of young people having fun conversations on a patio

I was diagnosed with ulcerative colitis when I was 14 years old. I’ve been a patient for more than half my life. There was stage one, where I didn’t know anything about IBD; I took some pills and felt better. There was stage two, after my first big flare in college, where I learned a lot about the condition, my body, and how to be an athlete (I’m a runner) while managing it.

Then there was stage three, after my second flare in summer 2018. While I had mastered the physical aspects, I had neglected addressing the emotional side. I spent the last year getting my head on straight when it came to stress, anxiety, and unresolved anger in my life—all inflammatory emotions, in my opinion.

After years of learning about myself as a patient, here are the top things that help me lead a fulfilling life with IBD:

1. Use the 5 why approach.
When it comes to making tough life decisions—take a step back and ask yourself why. 38-year-old colitis patient and author of 52 Habits to Help You Feel, Eat & Move Better with IBD, Joseph Morstad from San Diego says, “Ask yourself ‘why’ you’re doing [it]. Then you continue asking the ‘why’ to your next answer.” Reach the core of why you’re making your choices; it “can be powerful and highly motivating when times are rough.”

2. Remember it’s okay to feel down.
“Our emotions can be analogous to the tide. It is always in flux,” says Morstad. “Appreciate the high tide and remember that the low tide is not permanent.” This is one of the most important things that keeps me moving forward. As patients, we often get the message to “stay positive” all the time, which is unrealistic and exhausting. It’s okay to not be okay, as long as you give yourself grace and do not stay there.

3. Embrace a higher power that works for you.
Finding a “philosophy that resonates with and supports you,” says Morstad, “can add a level of comfort to life with a chronic illness like IBD. To me, it’s helpful to believe that something else out there is working in my favor and has my back when I feel like everything else is working against me.”

4. Listen to your gut—literally.
Kelly Propst, 35, from Fort Lauderdale, Florida, says “it helps to know how you’re feeling physically but also emotionally in situations. If something is making you uneasy, it’s okay to listen to that instinct and remove yourself from the situation. It’s not selfish; it’s self-care.”

5. Exercise when you can.
Moving my body in ways that release endorphins—that’s running and yoga for me—reminds me that I can do hard things and that my body is a machine that isn’t broken. Plus, the feel-good chemicals that are released are simply good for your mind.

6. Be open with your friends and family.
I spent years not discussing what was happening with me, until I got very sick and was forced to disclose to a lot of people. After that, I was able to fine tune my relationships. While it can be difficult at first, the long-lasting effect of knowing who shows up for you is priceless.

7. Seek out a support system.
While friends and family can be great rocks, knowing others with IBD is also important. They “get it” and can empathize with the fears and triumphs that you experience with your IBD.

8. Watch your diet.
I do not believe there’s any one diet that works for every patient. Pay attention to what works for you and what triggers symptoms and, along with your doctor, create a nutrition plan that treats your body well.

9. Be your own advocate.
Whether it’s at the doctor’s office, at work, with friends or anywhere else, stand up and speak up. You know your body best; if your doctor suggests something you do not agree with, voice your opinion and then listen to what they have to say. Empowering yourself to be your own biggest cheerleader takes more power away from IBD and gives it back to you as a person first, patient second.

10. Do your research.
Don’t live in the dark with IBD. One of the best things I ever did for myself was seek out information during and after my first flare. I familiarized myself with what my body was going to and educated myself on things my doctor would suggest. I asked questions. I talked to other patients. The more informed you are, the less in the dark you will feel with what’s going on.

Oshi is a tracking tool and content resource. It does not render medical advice or services, and it is not intended to diagnose, treat, cure, or prevent any disease. You should always review this information with your healthcare professionals.