From Feeling Alone with IBD to Building Communities with IBD
Congressional District: MS04
Chronic Pain, Gastrointestinal Disease
Issues and Challenges
Latonia has encountered: Access to Expert Providers, Insurance Issues, Medicare / Medicaid Issues, Disability, Discrimination (nonmedical), Invisible Illness, Medical Discrimination
My name is Latonia Ward. I was diagnosed with Ulcerative Colitis in 1993. I was only 17. When I was diagnosed, I had speedy and excellent care. I remember going to the clinic because of serious bleeding when I went to the bathroom. The pain that came along with it had me confused. I thought I was about to die. No one could relate to what I was going through.
On the day of my appointment, I provided stool samples (it was more blood than stool). The doctor looked and immediately referred me to a Gastroenterologist. From that point I was treated with medication for approximately four years. As things took a turn for the worse, I was presented with the option to have surgery. I was told that I would have to get an ileostomy (a bag I wear on the outside of my body to collect my stool). This meant they were removing my rectum and sealing my anus. I was told that the ileostomy would be permanent. I was at a point in my disease where I would have agreed to anything they told me, if it would make me feel better.
After my ileostomy was in place, I researched internal pouches. That was the next thing to being as “normal” as possible. However, I had to also find someone who would accept my state health insurance.
During my research I came across a procedure that would allow me to have an internal pouch. A continent ileostomy, also known as a K-pouch, Koch pouch or BCIR. To my surprise there was a doctor who performed the surgery two hours away from me. I got the appointment, and he was so excited to perform the surgery. I was on state Medicaid at the time, but I didn’t have to pay a dime for the procedure.
As time went on, I got better. However, I got lonelier. I went from feeling like a lab rat that everyone had to touch, to feeling forgotten. It got hard to even make appointments with doctors because one doctor did not want to see me after another doctor had seen me. On top of that, I still had never seen anyone like me with this condition. Until this year.
I was introduced to an organization called Color of Crohn’s and Chronic Illness (COCCI). I knew I had to be a part of this. I didn’t care if I had to staple papers. I knew at that moment that living this journey was not in vain. I could be available to help others who are new to this journey. Even if that meant to just be an ear for them to vent.
I have never shared my story until this year (2021). However, through community I have learned that there is power in my voice and there is power in your voice. My life has purpose and meaning, and I am so glad that God revealed this to me.
I hope that my story empowers others to share their journey with IBD. We do not have to suffer in silence, and you are not alone. Be a voice for others who don’t think that their voice matters. All of our stories are different, but we are in this together.
My Motivation and Inspiration
I have learned that my voice has the power to help others who are going through challenges. I want to be an inspiration for others to share their story. If we all speak up, the voice is louder.