Fearing the passage of time with IBD

 

For most, New Year’s Eve is a night to let loose and celebrate. A time to reflect upon the triumphs of the last year, or at the very least, bask in the promise of a fresh start of the one to come. I haven’t really enjoyed December 31st for a long time. Honestly, the passage of time terrifies me.

I turned 30 this year. I didn’t feel like it was something to celebrate. It made me panic. For me, thirty didn’t evoke the thought of “thirty, flirty, and thriving.” I’m not sure exactly what someone was imagining when they coined that phrase, but I’m pretty sure a scarred up belly, a few missing organs, a bag to collect stool stuck on my stomach, and a port in my chest weren’t in the picture.

I’ve learned that time passes differently when you’re chronically ill. The calculations change when it comes to making memories, living in the moment, or planning for the future.

Do I push to fit in as much as I can while I’m still “young”? Still “functional?” 

Have the choices I’ve made in my teens and 20s effectively totaled my body and placed huge limitations on my future? Was I foolish to think I could still have everything, still achieve everything, despite what turned out to be a devastating diagnosis in my teens? 

What sort of time scale are we even talking about when I say “future”? Do I really expect a damaged, disease-ridden body like mine to be walking around for several more decades? When 30 feels like 70, what about 45?

At one point, I expected to have my PhD, a full-time research job at a prestigious institution, and my first child by 30. Instead, I had to settle for a masters as my body quickly crumbled throughout my education, I just started to teach part-time at a small state college, and I no longer have a uterus. When I was in college, I had few thoughts of motherhood except putting it off long enough to launch my career. Now, I’m faced with the harsh reality that I may get neither- my ability to work is tenuous, susceptible to the looming time bombs within my body and adoption is a daunting, exhaustive, and expensive process.

And let’s not forget about the remission time clock. January 9th marks the beginning of my fourth year on Entyvio, the first medication allowing me to achieve long-lasting, non-surgical remission in the 15+ years of fighting this disease. Entyvio has been my miracle drug. However, it comes with a terrifying caveat: since it’s a biologic, a foreign protein floating around in my bloodstream, it’s basically an inevitability that my body will start producing antibodies against it at some point. How long do I have until my body fights not only itself, but the medication saving it, as well?

Sometimes people ask about my “forever” and I never know quite how to answer that. Some of it’s easy- my stoma, Roo, is a permanent part of my life. There’s nothing left down there to reattach my small intestine to. But what about the medications? The daily IV fluids? The semi-frequent ER visits for possible obstructions and intractable migraines?

This is what I just don’t know (which is terrifying for a control freak). On one hand, my miracle drug didn’t exist when I was first diagnosed and had j-pouch surgery. There is certainly ongoing progress in the development of treatments for IBD. On the other, so much damage to my body has already been done. Brain damage from the seizures I had while on Remicade and 6-MP, which has made my migraines harder to control. A short digestive tract that doesn’t absorb enough water and electrolytes to keep me hydrated by oral intake alone. Lungs that still sometimes ache years after pulmonary embolisms. A pelvis full of scar tissue, one cantankerous ovary, and not much else.

I really don’t know where this leaves me. I try not to extrapolate based on the trauma of the past- I know it’s not helpful (or scientifically sound) to assume that I’m going to have a major surgery or life-threatening crisis every couple of years. Getting to where I am now has been rough (understatement), but I’ve reached a stability that I haven’t had since my diagnosis. This fall, I managed to teach an entire semester without ending up hospitalized or even in the ER.

Overall, I choose to hope. Don’t get me wrong- I won’t deny that I’m terrified. I won’t pretend that I think I’m done with ER visits, hospital stays, or even surgeries. But I’m ok today. I’ve committed to teaching another semester. We’re about to get a kitten and are even putting some money away to hopefully start the adoption process next year.

It’s taken me years to get here, but I’ve abandoned the ideal of sticking to a perfect timeline. My body’s taken so much from me. I’ve chosen to accept that and move forward.

Today is enough. It has to be.

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Born and raised in upstate NY, Kristen Weiss Sanders is still learning to be a southern girl following her move to Atlanta for graduate school in 2010. She completed her masters degree in neuroscience at Emory University and is now a biology professor at Dalton State College in northwest Georgia.

A third-generation IBDer, Kristen was diagnosed with ulcerative colitis in 2006 and re-diagnosed with Crohn’s disease in 2012 when her j-pouch began to fail. She is now a permanent ostomate and shares all of her adventures with her stoma, Roo.

Kristen attended her first Girls With Guts event at the 2017 Celebration in Chicago. Jumping on board as the blog coordinator and later content manager, she is excited to now put her science background and grant writing skills to good use as part of the board. She credits the constant example and support of the strong women in her family for her determination to thrive with Crohn’s disease and use her IBD journey to empower others.

 
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