In the past 11 years with ulcerative colitis, I have experienced three major flares and multiple mini flares throughout the years. The major ones involved hospital stays, transition in medication regimen, and reevaluation of care. The mini flares felt more life-disturbing, challenging, and frustrating as I was usually more blindsided by them. This ongoing cascade of inflammation continues to contribute to my fatigue.
With major flares, it’s usually a case of medication failing and chronic, uncontrolled inflammation. Mini flares, on the other hand, feel like rude awakenings. My body reminding me that it’s sensitive to stress, lack of sleep, catching colds, and anything that might slightly disturb my immune system. Interestingly, my menstrual cycle, perhaps the shift in hormones, also has an effect on my digestive tract. I start to experience flare-like symptoms: abdominal cramps, all-over body pain, and nausea.
It seems easier to manage major flares. Current medication not effective? Easy. Medication is changed. (Of course, I use the word “easy” here very loosely.) Labs are not where they need to be? Adjust supplements and diet. With major flares, I can easily identify reasons for my chronic fatigue and brain fog. My family will always be supportive and understanding, but anyone outside the circle won’t understand why you need “X” amount of time to recuperate. They almost seem baffled that inflammation can make you nearly bedridden.
However, as soon as a hospital stay is involved, it’s as if a switch goes on. Their whole attitude changes right away. They go from bewildered to perhaps embarrassed. This is something that has always been unsettling for me. I wish I could talk about not feeling well without having to disclose the details of my health to be treated seriously. Does my health not warrant any seriousness if a hospital visit isn’t mentioned? It’s unfortunate, but it’s something I usually have to mention if I wanted to be taken seriously in order to focus on recovering.
A big part of that recovery from a flare involves being in a safe environment, and that’s my home. I’m near my bed, restroom, and medications. Everything else goes on the backburner, including work, projects, school assignments, etc. They all have to wait. Everyone is given the appropriate notification, and I make sure to communicate when I can resume working on such tasks.
For the most part, people have been understanding and really accommodating! They continue to support me and check in on me. There was never an issue about work ethic, and for that I have always been grateful. It helps alleviate some of the stress. But of course, it doesn’t ease the guilt. When you expect more of yourself, it doesn’t come easy when you have to do a little less.
And that’s when it gets challenging when dealing with mini flares. All it takes is a cold or losing sleep to wreak havoc on your immune system. In these situations, I can usually jump in quickly to stop the symptoms. I fix my sleep schedule, figure out the sources of stress, and communicate better with colleagues and family. If I’m lucky enough, I may feel under the weather for a few days to a few weeks. For my immune system, that’s not bad at all. But it quickly takes a toll when these mini flares start to happen frequently and last longer. Yes, I may not be running to the bathroom 20 times an hour or have stomach-doubling pain, but these types of immune attacks slowly start to strip my energy away.
Ongoing inflammation is energy-expensive. And it’s almost impossible to draw energy from a nearly depleted system. I’ve gotten better at recognizing and quickly intervening with mini flares. As I write this, I’ve actually been recovering from a cold that has been incredibly daunting on my immune system. If it wasn’t for the Thanksgiving holiday, it would’ve been more challenging to recuperate. I was extra vigilant about eating well, getting 8+ hours of sleep, and prioritizing my schedule to alleviate stress.
Dealing with flares never gets easy, but you learn how to read your body better. I can recognize IBD symptoms from flu or viral symptoms. And because I know my immune system can be fragile, I know what steps to take to prevent any serious consequences. There are things outside of our control -- we can do everything right and life can still go sideways! As frustrating as it can be, I’ve learned to embrace and appreciate all the good and bad days.
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