Coping | IBD | Ostomy
The stuff of legends.
I knew from a pretty young age that my grandma (my mom’s mom) didn’t have a colon. For a long time, it was just a fun bit of family trivia, like Aunt Ethel’s brief stint in a Lithuanian dance company or something. Gram worked her whole life, raised three amazing daughters, and looked way too young/healthy to be a grandma when I showed up to start her collection of five grandchildren.
We spent our summers “camping” in our family caravan of RVs and she swam with us, still ate s’mores, and could fix anything- from your bike brakes to your prom dress. It just so happened that back a few years before I was born, they’d “rerouted her septic system” (her words- I can’t take credit for that amazing tidbit right there). It wasn’t until I was 16 that I’d have a word for that mysterious part of her younger self- two, actually- ulcerative colitis.
A sneak attack…
Looking back, my road towards really understanding that part of Gram’s life really started when I was around 12. Occasionally, I’d notice some streaks of blood with my BMs. At that point, I assumed it was my own fault for my diet and (lack of) exercise choices. I was a chicken, noodles, and applesauce kid. I ate my obligatory four pieces of cauliflower or broccoli with dinner, but no one could come near me with a salad. Or anything even slightly ethnic/flavorful. I was embarrassed and disgusted by my pre-teen self, and I sure as hell wasn’t sharing this.
Shortly before I turned 16, my mom noticed that I was running to the bathroom a lot. She wondered if I might have a UTI, but I finally confessed that it was the other reason- and I’d been seeing blood. Stool tests by my pediatrician ruled out various bacterial or parasitic infections. In was sent to a local GI, who scoped both ends and came back with the question, “Have you ever heard of Crohn’s disease?” The answer was something I’d never heard my mom say before: “my mother had ulcerative colitis.”
A whole new world.
Things escalated pretty quickly from there. I finally got into an IBD specialist and my diagnosis was definitively changed to UC. I graduated from high school with some serious pred-induced moonface. We chose my college, in part, due to its proximity to home and my GI. My first dorm room was picked based on the best student to toilet ratios. The next summer, I had an extremely rare reaction to dual-therapy with Remicade and 6MP that resulted in swelling in my brain, accompanied by seven tonic-clonic seizures in 24 hours. Needless to say, that was the end of that course of treatment. The following summer, I had active pancolitis, and it was time for that monster of a colon to come out. I was really confident in this decision- after all, Gram’s j-pouch was 20+ years old and still going strong.
I wish I could tell you that my j-pouch journey was a success and I followed in my Gram’s footsteps here. It wasn’t. At some point during all this, my mom was diagnosed with Crohn’s disease in her ileum. (side note: she’s done really well and hasn’t needed any surgery- proof that even people with the same genes don’t share the same IBD story!) Not too long after I started grad school, I was rediagnosed with Crohn’s in my pouch. My pouch swelled and failed pretty spectacularly. For Christmas 2013, I got my permanent ileostomy, Roo, and a Barbie butt.
Charging through- together.
Still, it was my family that got me through. Since 2010, I’ve been married to the man was already my boyfriend back when had the joy of catching me as I fell off the toilet and had the first of those seizures I mentioned earlier. Wesley’s packed impossible-to-reach wounds, passed me wet paper towels as I bawled through difficult ostomy changes, and laughed with me when Roo gets a little rowdy during intimate moments. My gram made me a quilt for my 16th birthday that’s been through SO many hospitalizations with me. My mom constantly reminds me how strong and resilient I am- after all, I come from a line of strong, resilient women. My “baby,” now adult, sister can escort my IV bags and I through airport security and make me ORS from scratch like a pro.
Wesley and I are now exploring how to build our family despite the huge demands that Crohn’s places on both my body and my time. My 2016 hysterectomy means that adoption is our best option. As I become increasingly more functional thanks to my ostomy, we’re working to move past the whole host of anxieties that come with being a both a parent and caregiver to/someone with a debilitating chronic illness.
It’s pretty clear that my family – both their genes and their love – have shaped my life with IBD. I think that’s really the key to how I’ve survived, and I wouldn’t have it any other way.
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.