By Natalie Miller Moore
Imagine every time you arrive to a new location, you need to immediately find a bathroom. That's what it's like living with inflammatory bowel disease (IBD).
It's just part of living with IBD—having the security of knowing if you need to go to the bathroom urgently, that you know where to do it. It also helps to know that if you are having any kind of pain, that you can have some privacy to deal with it.
Kate, 45, has IBD, and for her—finding a bathroom when she's traveling around sites for work is a challenge. If she needs to locate the bathroom during the work day, she scouts ahead. If it's an unfamiliar place, she tries to avoid going, preferring to stay close to her office.
"I've had such bad anxiety over it, because for me, it's the kind of situation where it's urgent, frequent, ‘get to the bathroom immediately or poop your pants with no warning' kind of thing," she said.
Under the umbrella term inflammatory bowel disease, there are two common types:
Ulcerative colitis involves only the colon and it characterized by urgent, painful bowel movements diarrhea and cramping – and dehydration, which can lead to fatigue.
Crohn's disease is inflammatory bowel disease that causes chronic inflammation of the digestive tract and often means that symptoms include nausea and vomiting.
Rebecca Vanderstouwe, a nurse practitioner specializing in gastroenterology, says that she hears from her patients all the time, that they "know where every bathroom in the city is."
"When patients say they don't leave the house, I try to reassure them that once we have a diagnosis, we can get control of the symptoms. The right treatment plus managing their diet is a huge part of it," she said.
Vanderstouwe offers some advice—start with knowing what you are actually dealing with. If you understand what's happening in your body, you are more likely to cope with it.
"IBD is very common, particularly in females, and an evaluation is important part of it to make sure it's IBD. Symptoms vary wildly, so it's important to rule out anything else and get control of symptoms," she said. "Medication to prevent symptoms as well as dietary changes can really help. We also need medications to prevent flare ups and can even prescribe medications for symptoms like intestinal spasms."
Vanderstouwe emphasizes that self-diagnosing is not very helpful, because finding the right diagnosis under the IBD umbrella will direct the treatment suggestions and there are many more options than there used to be. IBS, or Irritable Bowel Syndrome, has similar symptoms and impairs quality of life but is not life-threatening or genetically linked.
Joanna, 38, has been dealing with ulcerative colitis for many years, since the onset while she was a college soccer player.
"I think managing the symptoms on a daily basis include taking the right medication, eating right and exercise. Finding the right medication to keep the UC in remission is crucial. Eating right can be difficult as it is not always easy to do but knowing foods that may irritate you can help and that is figured out over time," she said.
One of the most important management techniques is understanding what foods irritate your digestive tract.
"Knowing the comfort foods you can eat at any time and know you'll feel good is an excellent thing to know. For example if you are out to dinner with work people, even vacation, you might tend to go for those comfort foods and that way you won't feel uncomfortable," she said.
For Joanna, chicken breast and potatoes, both without a lot of seasoning is a go-to dinner order, along with breakfast foods like eggs, hash browns and pancakes.
Kate's health care provider was able to identify casein as an allergen for her, so she reads a lot of labels. Casein is a protein found in cow's milk, and that means conventional dairy products are mostly off the table. She tries to stick with almond milk and vegan dairy products.
If you have IBD, make sure you and your health care provider work together to identify your trigger and comfort foods.
Beyond management of symptoms, finding the right medication is essential. When you have better control, and you feel better physically, you'll also have confidence in doing your everyday tasks.
"Know what you are dealing with, and know that there are treatment options. Don't think it's in your head, that there's nothing you can do. Now, there are so many things we can do, with more prescription options than ever, so we make life more livable for people dealing with this," Vandestouwe said.
The best news for people today is that there are treatment options that work. Not just when you have symptoms, but to protect your long term health.
This resource was created with support from Genentech, Inc.