I have had seven surgeries to treat my disease, and the eighth is scheduled for later this month.
I no longer have a colon. Twice in my life, I have endured the challenges and embraced the freedom of an ostomy.
I know more about the inner workings of a hospital, the intricacies of medical insurance and the art of medication pronunciation than I care to.
I am one of 1.4 million Americans with Inflammatory Bowel Disease (IBD)–a classification of autoimmune diseases characterized by severe abdominal pain, nausea and diarrhea. I have been diagnosed with both forms of IBD–Ulcerative Colitis and Crohn’s Disease. Although I was originally diagnosed with UC (the form of IBD that attacks only the large intestine), once my colon had been removed and examined, my doctors reluctantly changed the diagnosis to CD (the form of IBD that can attack any part of the digestive system from the mouth to the anus.)
I used to say, “I don’t let IBD define me.” I didn’t want to be the sick person everyone felt sorry for, and I had a strict don’t-ask-don’t-tell policy. I talked about my IBD on a need-to-know basis. Doctors needed to know, and that was about it. Neighbors? No. Co-workers? No.
Who would want to know anyway? The symptoms and challenges of Crohn’s Disease and Ulcerative Colits are not exactly polite dinner conversation. They are uncomfortable to talk about, and they are hard to hear. I kept it all to myself….until one night a few years ago when the Hubs and I went to a New Year’s Eve party.
As usual, the guys were sucked into the man-cave and the women drifted to the kitchen. I joined a group of women at the island and listened to another momma talking with deep concern about her 20-something son. His stomach was…”bothering” him, she said, searching for the most delicate word she could find for his ailments. “And,” she whispered, “he’s been passing blood.”
I saw the fear on her face and the horror on those of the other women listening. Some even started to drift away. I flashed back to the time not long after my twentieth birthday with I first saw blood in my stool. I remembered how scared I was and how I didn’t know what was happening. I remembered how I ignored it for months, thinking it would just go away as quickly as it started.
But it didn’t. It only got worse, and finally I found the courage to tell my own mother that something wasn’t right. She immediately called our family doctor, and by the end of the day, I was admitted to the hospital, starting my journey to an IBD diagnosis.
Now in this kitchen with this other momma scared for her son who was only a few years older than my own, I knew what she needed to do. She was afraid for her baby, but she didn’t know what to do or how to talk about the problems.
I waited until she was alone, then I quietly approached her. “I know what your son is going through,” I told her. “I have Crohn’s Disease. If you need the name of a good gastroenterologist or if you have any questions, please let me know.”
She hugged me and thanked me and then declared, “I never knew.” I had worked in the same building with this woman for years, and she never knew I was sick. Crohn’s Disease and Ulcerative Colitis are invisible diseases. When some of the worst symptoms are managed by medications like mine are, I don’t look sick. Inside, I might feel like I’ve swallowed glass, but on the outside, I look like everyone else. If I had been more open about CD, maybe she would have known, and maybe she would have found an excuse to stop me in the hall or knock on my office door. Maybe she wouldn’t have needed to be as frightened for her son.
Since then, I have been more open about my disease, and most of the time when I mention my CD, I hear, “Oh, my husband’s assistant has that,” or “My brother-in-law has something like that,” or “I wonder if my friend’s daughter has that.”
I no longer say that Crohn’s does not define me. By my very existence it does define me. It makes me the strong woman I am today. It makes me the caring momma I am. It makes me the hard worker I am. I have accomplished everything I have in spite of, and therefore because of, Crohn’s Disease.
This week is Crohn’s and Colitis Awareness Week. Do you know someone with Inflammatory Bowel Disease? With more than 1.4 million of us in this country, chances are you do. Learn more about the diseases at ccfa.org, and look for more posts on living with IBD from your favorite stiletto wearing blogger this week.