By Sarah Keitt, as told to Hallie Levine
I’ve lived with inflammatory bowel disease since 1990, when I was diagnosed with ulcerative colitis. Thankfully, my symptoms resolved with surgery, but about 6 years ago I began to experience a recurrence of frequent abdominal pain and diarrhea. I suffered for years, until this past December, when I was finally diagnosed with Crohn’s.
While I’ve started to get my life back, it hasn’t been easy, especially when it comes to my relationships.
Coping With Isolation
My Crohn’s symptoms started right around the time my kids were about to enter middle school. I had spent years being involved in everything from their classrooms to their sports games. But all that ended when I got sick.
I couldn’t go to my kids’ soccer matches, or meet other moms for coffee, because I couldn’t be away from a bathroom for that long. I developed severe anemia due to bleeding in my GI tract. I became so weak I could barely walk. All of a sudden, I found myself homebound, barely able to walk up and down stairs.
Still, I didn’t feel comfortable confiding in anyone except Geordie, my husband. Bloody diarrhea isn’t exactly cocktail-hour conversation. My family and close friends knew I was anemic, but I always tried to put my best face forward when I talked to them.
I have other chronic health conditions, including ulcerative colitis and multiple sclerosis, but I’d never thought of myself as disabled before. Now I did, and it was so depressing. It took so much energy and strength just to get through the day, while other mothers around me lived normal lives. I felt so lonely.
I wasn’t the only one who put on a brave face. It was agonizingly hard on my two kids, Lucy, now 17, and Theo, now 15.
My children had a lot of worries that they didn’t always vocalize. Over the next several years, I was in and out of the hospital for blood transfusions and surgeries, and it was very scary for them. They never asked a lot of questions. It was always just, “Mom’s not feeling well,” or “Mom’s tired.” They knew to run upstairs when I needed something, because it was hard for me to navigate stairs.
It really impacted our ability to do things as a family. We took them to an amusement park once and I couldn’t walk because I was so weak. We got a wheelchair, and I could tell from their faces how hard it was for them to see me in it. They were older by then, too — in middle school and high school. I don’t know what I would have done if they were younger.
Finding Support Is Key
In my case, it’s my husband, Geordie. When we met, he knew I had both multiple sclerosis and ulcerative colitis, even though I appeared perfectly healthy on the outside. But he realized there was always a chance both of these diseases could flare up, and he was prepared for that.
Neither of us expected the Crohn’s disease. But he has been a rock. He spends every day trying to make sure I have everything I need and that I get the right care. I know it’s been a drain on him, but he’s never once complained.
This past December, I had a surgery known as an ileostomy, where they removed my colon and replaced it with an ostomy bag, a pouch worn on the outside of my body to collect waste. It’s hard not to be self-conscious, but Geordie has been incredibly supportive. He always reassures me that he still finds me attractive and that he’s so grateful for it, because it’s allowed me to get my life back. I wouldn’t trade my husband for the world.
I also have a small but strong network of support beyond Geordie. I found a couple of online support groups specific to ileostomy and Crohn’s disease, and I have a good group of local friends whom I can turn to for help.
It was hard to cope with people during the COVID-19 pandemic. The medications I take to treat all my conditions suppress my immune system, which means I didn’t mount a response to the COVID-19 vaccine. I’ve been made fun of for wearing a mask, and had to deal with people who just don’t seem to understand that COVID could kill me if I got sick. It’s terrifying and sad when you are told to your face that you don’t matter.
Why It’s Important to Be Open
My ileostomy has allowed me to begin to return to normality. I feel a lot stronger, and have a lot more energy. I ran for local office, something I could not have done 6 years ago. I look forward to going to my kids’ soccer games and rock climbing meets, something I couldn’t do just a couple years ago.
But I’ll be honest. Walking around with an ostomy bag does a number on your self-confidence. I cover it under clothing, but it still is a small bulge under a sweater or dress. When I talk to people sometimes, I wonder if they look at it and are confused about what it is.
The hardest part of an ostomy bag is when I have to change it in public. When you open it, it smells, and there’s no way to spray that odor away. Occasionally, it’s leaked onto my clothing when I’m out, and I’ve had to stop whatever I’m doing to make an emergency trip to Walmart for a new shirt.
But whenever I feel embarrassed, I remind myself that the bag gives me back my freedom. I can eat what I want now, and be present for my husband and kids, because of it. Sure, no one wants to talk about bathroom habits, but if I let people know that I have to wear an ostomy bag because I have Crohn’s disease, I help give the condition more visibility. That doesn’t just help me — it helps everyone who lives with this condition.