Chronic illness forces you to wear many hats and approach life in ways you never thought possible. One of those hats is being an investigative journalist or sleuth. Each time something starts going awry with our health we immediately start the mental gymnastics about what could be going on and if the symptoms are linked to our IBD.

I find that even though my Crohn’s has been in remission since August 2015, that the next flare always looms in a cloud of worry when I’m not feeling my best. 

This past week I experienced this firsthand when my eyes both started twitching nonstop, along with headaches. I started thinking about what I could have done to trigger this bodily response. Was it Crohn’s related? Hormonal from breastfeeding weening? A mineral deficiency? A problem with my eyes or vision? Sleep deprivation or stress? The laundry list of possibilities and worries weighed heavily on me. After consulting with my GI, OB, and having an appointment with my eye doctor, I learned the eye twitching was a result of allergies. I now do eye drops once a day to help. It was such a relief to get an answer and physically be able to do something to make myself feel better.

When you notice an uptick in IBD symptoms or health issues in general how do you get to the bottom of what’s going on?

Here are my top tips for getting answers:

•Be proactive. Don’t let things fester and let your anxiety get the best of you.

•Take physical notes, not just mental ones. As the hours turn to days it can be difficult to remember when symptoms began and if they progressed. Keep a simple log of what is happening, how often, the severity, etc. 

•Reach out to care providers early and often. Send a quick message on the patient portal informing your GI about what is going on. With IBD, I find it helpful to always loop my gastroenterologist in since so many issues are often related to Crohn’s. 

•Be seen. If symptoms don’t resolve in 3-5 days, it’s a good idea to be seen in person or at least a telehealth appointment. You can always get on the books and cancel an appointment if you start to feel better. 

•Try not to Google too much. While this is always tempting and can feel like a quick way of gaining understanding, it also can lead to going down a dangerous rabbit hole of what ifs that possibly aren’t even relevant. 

•Listen to your gut. You know when something feels off. Don’t drown out how your body is speaking to you through symptoms. 

•Practice mindfulness and calming exercises. It’s not unusual to feel up against a wall or like you’re taking two steps forward and one step back with chronic illness. Remember to breathe. Take a walk outside to clear your head. Do all you can to rest your mind from stresses that can trigger your IBD.

I get how exhausting it is to constantly feel at odds with your body and worry about what could be going on. Suffering in silence and not communicating health challenges only sets you back from feeling your best. Be mindful of how you feel each day and feel empowered by collaborating with your care team and giving them all the necessary intel to have the full picture when figuring out your health story past and present. 

Stay tuned for a special discussion on IBDLyfe, Wednesday June 29, 2022, at 1 pm CT about “How to Be Your Own Best Advocate in a Provider Setting.” I’ll be speaking alongside fellow patient advocate, Tina Aswani Omprakash. Register here.