Greta is our first guest poster that submitted her story on our website. Share your voice too by submitting your story on our website!
I speak openly about having Crohn’s because it affects my life everyday and that, in turn, affects the lives of those around me…my boyfriend’s, my daughters’, my mom’s, my clients’, and my colleagues’. I was diagnosed in 1997 after four years of weight loss, fevers, pain, bloody diarrhea, a nasty e.coli infection, and multiple hospitalizations. Back then, diagnosis usually meant months or years of suffering before someone finally put the pieces of the puzzle together.
I started getting sick in 1993 and was undiagnosed through my second pregnancy in 1995. I was accused (by my family, my doctor and my boss) of purposefully starving myself to avoid weight gain. A victim of Army medicine and ignorance, I was fortunate to deliver a healthy baby girl just shy of a month early. She was small, right at 6 pounds and 17 inches, but thankfully otherwise in good shape. I wasn’t.
Her delivery set me on a course of near-death emergency room visits and hospitalizations that led to a family doctor in a small town in Louisiana finally giving me an answer to what was going on with my belly. I’ll never forget handing back the container and him saying, “I need a stool sample, dear.” I said, “Yes, I know. That’s it.” He looked at me and then into the plastic cup and immediately called the hospital. I’d managed to fill it with what I call the pulled pork variety–shredded fecal matter swimming in lots of blood and water. One colonoscopy and one small-bowel follow thru later, and ta-da: Crohn’s Disease.
Asacol and Flagyl came first, along with 60 mg of Prednisone daily. I graduated to the bigger guns after a ruptured abcess nearly killed me and sent me into a coma for a few days. The emergency surgery took a small section of bowel, along with fused Fallopian tubes, an ovary, my spleen, and my appendix. That probably would not have happened if Crohn’s hadn’t been allowed to spread unchecked for so long.
In 20+ years, I’ve been on nearly everything: Azathioprine, Methotrexate, Humira, Remicade. I lived with a PICC line for TPN for months before finally agreeing to a second resection, which included the loss of my ileocecal valve, and the introduction to zero bowel control if I eat a regular meal.
Most recently I’ve been in a clinical trial for Vedolizumab. Despite four years in the trial, my disease progresses and the symptoms are barely controlled. I’d be lying if I said it didn’t suck. And I’d be lying if I said I proudly persevere. I don’t. Despite two resections and all the different meds, I’ve never experienced remission. Crohn’s continues to work it’s way through the healthy section of my bowel and has reached the colon. Damn.
I get tired, I get cranky, and I sometimes rail at the cards I’ve been dealt. Despite the disease and it’s damnable progression, I’ve raised two great girls–one who graduated from college last year and one who started college this fall. I graduated from law school in the top of my class ten years ago. I have a moderately successful private practice. My family accepts me how I am and recognizes I have limitations without making me feel like a diva for them. I survived the end of a 15-year marriage. I survived building a house with the best boyfriend in the world. When the builder said there wasn’t enough room in our master bath design to put a door on the toilet room, my bf redesigned a few things to make it work (since we’d been living together already, I think it was as much for him as for me, but still).
There wasn’t a lot of information about IBD available online when I was diagnosed. I want a cure and better medicines, but I also want to spare as many people as possible from going through the lengthy delay in diagnosis that I did. The only way that will happen is through awareness. I’m not an activist and consider myself lucky to make a full day at the office. But I can talk. And I open my mouth regularly.
When I decided to practice law, I had to get over the bathroom embarrassment. Of course it’s difficult to disguise being away for weeks at a time due to hospitalizations. It opened the door for dialogue, though. People know who they can talk to about IBD, and I’ve given out my cell phone number to clients and colleagues to give to people who are just diagnosed and want to talk to someone who’s “been there.” Judges and attorneys know when I stand up in a hearing, I’m going to the bathroom.
I don’t talk about the disease in a way that seeks pity. I’m frank and when someone asks about my health, I don’t give a cursory answer. I tell them the truth without crossing the TMI line. I figure if they’re going to take the time to ask, I’m going to take the time to answer. It’s just one more person who will know that living with Crohn’s can suck, but it can be done. And it can be done well.