When you find out you have Crohn’s disease, it’s natural to think about how your life may change. Crohn’s is a chronic disease, something you’re going to have for the rest of your life. Even when you’re in remission, it may never be too far from your mind.
Still, you can manage the symptoms. The first step is getting with your doctor and health care team to come up with a treatment plan -- and live a full, active, and meaningful life.
You can go out to eat. Crohn’s is nothing if not unpredictable. You sometimes don’t know when the symptoms of Crohn’s -- gut pain and cramping, recurring diarrhea, fatigue, and others -- will hit, or when the urge to use a bathroom is going to strike. With a little planning, though, you can enjoy a meal out.
- Check out the menu online before you go, so you can get an idea of what you can and can’t eat. If there’s nothing you can have, call the restaurant and ask if the chef can prepare a special meal, or think about eating elsewhere. Or eat a little ahead of time and have only what you can at the restaurant.
- Make sure you know where the nearest bathrooms are in case of an emergency.
- Think about taking an emergency kit -- your medicine, water, wipes, a trash bag, hand sanitizer, maybe a change of clothes -- in a backpack or in the car, just in case.
You can eat a variety of foods. Research says there's not a direct link between what you eat and Crohn’s disease. Still, anyone with Crohn’s can point to foods they think cause a flare-up (it’s different for everybody). So track what you eat, and stay away from foods that you think may cause you distress.
This is important, though: Even when you don’t feel like eating, you still have to eat well and healthy. It'll keep you properly nourished and help you manage your symptoms.
You can travel. Car rides and plane trips present their own challenges to those with Crohn’s, but they're not insurmountable.
- Bring your meds, all of them, and keep them with you (not in your checked baggage) in their original containers. Bring enough for the whole trip. Copies of all prescriptions might help, too, with brand and generic names. The names of some local doctors who know Crohn’s disease wouldn’t hurt.
- Again, know where you’re going and where the bathrooms are. Choose an aisle seat close to a bathroom on the plane. On a road trip, know where the rest stops or restrooms are.
- Watch what you eat and drink.
- Pack a “just in case” kit with a change of clothes, and keep it with you.
You can beat fatigue. That run-down feeling is common for people with Crohn’s. There are a variety of causes for it -- from anxiety, stress, and depression to poor sleep to lousy eating habits. They all can be overcome. Make sure you eat well, get good sleep, and exercise regularly.
You can (and should) exercise. Always check with your doctor first, of course, but regular workouts can help you fight off that tired feeling and can help things like your mood, weight, and bones. It also can help keep flare-ups to a minimum. Low-intensity walking might help. Still, be careful. Some exercise, depending on how long and how hard you go at it, could make your symptoms worse.
You can become a parent. Women with Crohn’s in remission can become pregnant as easily as those without. And men with Crohn’s are just as fertile as those who don't have it.
There are some tricks to a pregnancy with Crohn’s, and because medication for your disease is in play, you need to talk to your doctor about what to take and when to take it. Still, for some women, their Crohn’s gets better during pregnancy. Women with Crohn’s usually have healthy pregnancies and babies, though the risk of complications is slightly higher than for women who don't have Crohn's.
The sex lives of people with Crohn’s is sometimes affected. Some have less libido, as well as stress and self-consciousness because of the disease. Worries about incontinence or pain can affect things, especially when the disease is not in remission. Talk to your doctor about ways to overcome these hurdles.
You can tell people (or not). Given the intimate nature of Crohn’s, some people have a hard time opening up to others about it. And that’s OK. Talking with your doctor or a mental health expert may help you figure out ways you can tell people, if you want to. Talking about your condition with close friends and family members can help. Everybody needs support.
Similarly, your co-workers or teachers might need to know about why you may have to miss work or school.
You can do things you probably think you can’t -- even with an ostomy. An ostomy is a life-saving surgery that some people with Crohn’s have. It reroutes bodily waste into a pouch on the outside of your body (or, sometimes, to an internally created pouch). But it’s not a sentence to sit on the couch for the rest of your life.
You can exercise, you can swim, you can travel, you can go out with your friends, and you can have sex, get pregnant, and have a child with an ostomy. You can eat what you want (though check with your doctor). You can play sports (though probably not contact sports). With modern, discreet, and odor-proof pouches, people may never even know you’ve had an ostomy.
With a take-charge attitude, close work with your doctor, and a solid treatment plan, you can live life to its fullest with Crohn's disease.