By Sarah Kate, as told to Haley Levine
I have lived with IBD since 1990, when I was diagnosed with ulcerative colitis. Fortunately, my symptoms were resolved with surgery, but about 6 years ago I started experiencing recurring abdominal pain and frequent diarrhea. I struggled for years, until last December, when I was finally diagnosed with Crohn’s disease.
As I started getting my life back, it wasn’t easy, especially when it came to my relationships.
Dealing with isolation
My Crohn’s symptoms started around the time my children were about to enter middle school. I’ve spent years participating in everything from their classes to their sports. But it all ended when I got sick.
I couldn’t go to my kids’ soccer games, or meet other moms for coffee, because I couldn’t stay away from the bathroom for long. I developed severe anemia due to gastrointestinal bleeding. I became so weak that I could barely walk. Suddenly, I found myself at home, barely able to go up and down the stairs.
However, I didn’t feel comfortable trusting anyone except for Jordi, my husband. Bloody diarrhea isn’t exactly an hour’s talk. My family and close friends knew I was anemic, but I always tried to give my best when I talked to them.
I have other chronic health conditions, including ulcerative colitis and multiple sclerosis, but I’ve never thought of myself as disabled before. Now I did, and it was very frustrating. It took a lot of energy and strength just to get through the day, while the other moms around me live normal lives. I felt very lonely.
I wasn’t the only one who put on a brave face. It was very difficult for my two children, Lucy, now 17, and Theo, now 15.
My kids had a lot of fears that they didn’t always talk about. For 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 didn’t ask many questions. It was always just ‘Mom’s not feeling well’ or ‘Mom is tired’. They knew to go upstairs when I needed something, because it was hard for me to move up the stairs.
It really affected 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 to see me in it. They were much older at that time, too – in middle school and high school. I don’t know what I would have done if they were younger.
Getting support is key
In my case, it’s my husband Jordi. When we met, he knew I had multiple sclerosis and ulcerative colitis, even though I looked healthy on the outside. But he realized that there was always a chance for these two diseases to spread, and he was prepared for that.
None of us expected Crohn’s disease. But he was a rock. Every day is spent trying to make sure I have everything I need and get the right care. I know it was a drain on him, but he never complained.
Last December I had a surgery known as an ileostomy, in which they removed my colon and replaced it with an ostomy bag, a bag that is worn on the outside of my body to collect waste. It’s hard not to be shy, but Jordi has been incredibly supportive. He always reassures me that he still finds me attractive and that he is so grateful for that, because he allowed me to take my life back. I wouldn’t trade my husband for the world.
I also have a small but powerful support network that goes beyond Jordi. I’ve found a couple of online support groups dedicated to ileostomy and Crohn’s disease, and I have a good group of local friends I can turn to for help.
It was difficult to cope with people during the COVID-19 pandemic. The medications I take to treat all of my conditions suppress my immune system, which means I haven’t had a response to the COVID-19 vaccine. I made fun of wearing a mask, and had to deal with people who didn’t seem to understand that COVID could kill me if I got sick. It’s terrifying and sad when you’re told in your face that you don’t matter.
Why is it important to be open
An ileostomy allowed me to start returning to a normal life. I feel much stronger, and I have a lot of energy. I ran for local office, something I wouldn’t have done 6 years ago. I look forward to going to my kids’ soccer and rock climbing matches, something I couldn’t do just two years ago.
But I’ll be honest. Getting around with an ostomy bag has a huge impact on your confidence. I cover it under clothes, but it’s still a little bulge under a jacket or dress. Sometimes when I talk to people, I wonder if they look at it and feel confused about what it is.
The hardest part about my ostomy bag is when I have to change it in public. When you open it, it smells like, and there’s no way to spray that scent away. Every once in a while it leaks on my clothes when I’m out and about, and I’ve had to stop whatever I’m doing to make an emergency trip to Walmart to get a new shirt.
But whenever I feel embarrassed, I remind myself that the bag gives me back my freedom. I can eat whatever 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 a stoma bag because I have Crohn’s disease, I help give the condition more clarity. This not only helps me – it helps everyone who lives with this condition.