Walking the line

Today is the last day of Crohn’s and Colitis Awareness Week in the US. So I am writing a post today to raise some awareness about what it is like to live with inflammatory bowel disease (IBD). I have been really lucky to have stayed in remission for so long (now 8+ years).

Earlier this week I had a virus in my gut that could have triggered an episode of IBD, as it did almost 13 years ago. I was lucky this time around. Thirteen years ago, I needed to be hospitalized for two weeks because of the flare that the virus brought on in my gut. This week, I recovered my health within just a few days.

I walk on the line between the healthy and the sick. I am in remission, yes, and I can eat many more kinds of foods than I could when I was sick. I can go outside of my home without the fear that I won’t find a bathroom in time. I rarely have pain in my gut anymore, and if I do, it is usually due to gastroparesis, another gastrointestinal condition I have.

I have not been hospitalized for a flare of Crohn’s colitis in over ten years. In these past ten years I have not been confined to my bed for weeks on end nor have I had to worry about malnourishment or elevated liver levels. I can breastfeed my son without worrying about him getting any small dose of immunosuppressants, since I have been off of these meds for almost four years. The fecal calprotectin tests that my doctor orders still show no signs of inflammation in my gut, and I don’t worry about this test, I know what the results will show. I can feel it in my gut.

But those years of illness took a toll on me.

I am tired, so very tired, so much of the time. I took corticosteroids for about seven years on and off, and I believe they drained my adrenal glands. So even though it has been almost ten years since I took the last dose of corticosteroids, I am not sure my adrenal glands completely recovered. And at 40 years old, I am not so young anymore.

The trauma from experiences I had with the disease left an imprint on my body and psyche. I am not the same person that I was before I had severe episodes of Crohn’s colitis. I can relate to the character Frodo in J.R.R. Tolkien’s Lord of the Rings. Frodo’s experiences with carrying the ring weighed upon his psyche long after he dropped the ring in the fire.

I live with a form of risk aversion that comes automatically into my psyche. My mind often plays out worst-case scenarios before I can catch my breath. And it does help, of course, to stop and breathe. It does help to see how my imagination runs off with fear and turns it into anxiety in a blink of an eye. It does help to lean in towards my fear and to embrace that fear with the same tenderness that I give to my young son when he is fearful. It does help to practice loving-kindness for myself and for all others who are experiencing these kinds of heavy emotions.

But I won’t lie to my readers and say that it is easy to work with these kinds of heavy emotions. I won’t pretend that I can transform my fears every time or that I always have it all together. Because I don’t.

I’ve gone through years of therapy, practiced years of mindfulness meditation, and read many books and articles on trauma, and there are times when none of it seems to help.

There are times when I spin out on anxiety and hear the same worries again and again, as if they are on auto-repeat in my mind.  There are times when I struggle to summon whatever reserves I have of compassion and awareness.

There are times when I try to remember that I went through scary times that lots of people would call hell. I try to remember that I am human, and I sure as hell ain’t enlightened. I try to remember the moments almost 13 years ago when I looked in the hospital mirror and saw a ghost of myself, and I was scared shitless. I recall the kindness with which I spoke to myself back then. That kindness is always there for me, even if I have to search a little to retrieve it.

There is no active inflammatory bowel disease in my gut, but it left an imprint that lingers on in my body and psyche. Was it all “bad?” No. It was hard as hell to live with active Crohn’s colitis. And sometimes it is hard as hell to live with a mind that has experienced much trauma. But I would not be nearly so compassionate towards myself and others if I had not lived through all that I have.

And one of my sisters told me that I am not nearly so snotty as I used to be.

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