My name is Amy Btiebet Washington, I’m 34 years old and live in Ohio. I was diagnosed with Crohn’s disease when I was 26 (in 2012). Initially, I thought I had a terrible flu, but after a few days of symptoms, I was rushed to the hospital with a 106-degree fever. I was immediately treated for sepsis, which led to 5 days in the ICU. After multiple tests, I was diagnosed with Crohn’s disease. The sepsis was a result of a severe infection caused by Crohn’s disease. At the time of my diagnosis, I knew very little about the disease and didn’t know anyone who lived with Crohn’s or ulcerative colitis.
I have always been very vocal about my experiences with Crohn’s, fundraising to help find cures, and now I work at the Crohn’s & Colitis Foundation. I met my husband, Terrell Washington, on Bumble, in late 2015 and we were married just last September and celebrated one year of wedded bliss pandemic-style just recently! The funny story is that when we first started talking, he had already crept on my Facebook and seen that I had Crohn’s disease, just like him! And I think knowing that we both had the same illness was comforting and brought us closer together in many ways because we both “got” each other, having had intimate knowledge of the suffering associated with Crohn’s.
Terrell is from Rochester, NY and moved to Ohio in 1998. He’ll be 35 in November. He was diagnosed with Crohn’s disease in February 2002 after months of throwing up and chronic diarrhea, all exacerbated while playing sports. He was originally diagnosed with IBS, but knew it was something bigger, so he took it upon himself to get a second opinion.
The Crohn’s Life
Terrell and I have been on a variety of different medications as he was diagnosed 18 years ago, and I was diagnosed 8 years ago. I began with Budesonide and eventually switched to Humira when the Budesonide was no longer effective. I had my first bowel resection surgery on October 30, 2018. This was also the day that I was offered a job as the Executive Director of the Crohn’s and Colitis Foundation’s Northeast Ohio Chapter! I received the phone call 4 hours post-surgery and was overwhelmed with emotions. I’ve always viewed this as a sign that this was the work that I was meant to do!
Terrell is currently not taking any medication for his Crohn’s and manages his symptoms through diet. He has never had IBD-related surgery. Nevertheless, it’s comforting to know that we both understand each other’s experiences.
Terrell and I are both relatively cautious with our diets and know what our triggers are but occasionally cannot resist temptation (processed cheese, especially!). We typically reserve any sort of meals that are outside of our usual diets for the weekend, when we know that if we experience symptoms or a flare, we’ll be at home and by each other’s side to help take care of one another.
From Patient to Caregiver, and Back Again
I have always been a very independent person but this disease has made me feel helpless at times, having to rely very heavily on other people. I have always had my best friends, medical team, coworkers, colleagues, and family by my side every step of the way. My parents are truly the most supportive and selfless people, and I am so lucky that I can call them my mom and dad. But as I reflect on my IBD journey, I have truly learned the meaning of unconditional love through my best friend and partner in life, Terrell.
There aren’t many young couples who have to take on a journey like ours so early in life and for Terrell and me, Crohn’s has been an interesting arch nemesis. As much as he and I don’t love Crohn’s, we are grateful for the way it has allowed us to bond as a couple and as patients and caregivers for each other.
Over the years, Terrell has had to prop me up to get to the bathroom, hold my arms while I put on clean undergarments, sleep in a hard, squeaky old recliner at the hospital all while being a shoulder for me to cry on when this disease has felt so overwhelming. He is the person who has made me want to fight harder, grow stronger, and dream bigger.
Living with IBD as a Racial & Ethnic Minority
As far as our backgrounds go, my father is from Jordan and immigrated to the US when he was 20 and my mother’s family is from Croatia. My father is Muslim and my mother is Catholic. Terrell’s father is black and his mother is black, Mexican and Spanish.
Personally, I have always found it difficult to relate when I don’t see people from my ethnic background battling these diseases. The truth is that minorities are often underrepresented in healthcare media and marketing. Terrell and I hope to contribute to diversity, inclusion and health equity when it comes to helping patients of color who are really struggling. We both see ourselves as advocates for other diverse populations living with chronic illness. We have been fortunate to have access to healthcare resources and a support system but we also recognize that this is often not the case for other diverse populations living with IBD. We see this work as a personal mission to break down stigma and disparities within marginalized populations.
More education and outreach to diverse communities is especially necessary. I often think about my father’s family who all still live in Amman, Jordan. A few of my cousins who live overseas clearly have digestive issues but only have limited access to healthcare and resources. This lack of access has prevented them from receiving a proper diagnosis and treatment. The reality is that people across the world may have IBD and may never know how to treat it. Countries like Jordan need this kind of awareness so that patients may have a better quality of life.
Meanwhile, in the U.S., it’s particularly challenging to speak with GI doctors working in low-income communities who have shared that they only see their IBD patients in emergency situations. I think there’s a lot of work to do to ensure that we’re reaching these communities and meeting them where they’re at to help close the gaps. There are so many barriers that prevent regular visits with GI doctors in many low-income communities, including transportation, cost, childcare…. I spend a lot of time thinking about how Terrell and I can be better advocates for this population.
Owning our Crohn’s
When I think about owning my Crohn’s, I own the resilience that came with my journey. Crohn’s has turned me into a fighter, a quality which has projected itself on to so many other aspects of my life.
For Terrell, owning his Crohn’s means living his life with balance and poise. He knows that pushing himself too hard could compromise his health, so listening to his body has always kept him level-headed.
For both of us, the uncertainty of this disease has kept us on our toes and serves as a constant reminder to never take anything for granted.
While everyone has their own way to own their ailments, there is a unity that brings us all together and I’m reminded of that every single day in my marriage to Terrell. So I leave you all with the following:
“Love is love. Humans are humans. My voice, my father’s voice, the voices of those who cannot speak up will no longer be silenced. America was built on the basis of differences making us stronger, and of a melting pot making us more beautiful – never on the idea of excluding anyone who thinks or believes something different from us.”
So, no matter what our struggles are, if we can shine love and humanity on each other, we can always be stronger together and face our struggles as a united force.
