When you first learn you have Crohn's disease, you'll have questions about how it will affect your lifestyle. Learn all you can about how to manage it, so you can keep doing the things you love.
Find a Doctor and Treatment Center
First, you need a doctor who specializes in treating the digestive tract: a gastroenterologist. Ask your regular doctor to recommend one.
You can also look up doctors who specialize in treating Crohn’s disease and other inflammatory bowel diseases (IBDs) on the websites of these organizations:
- American College of Gastroenterology
- American Gastroenterological Association
- Crohn’s & Colitis Foundation of America
When you choose a doctor, consider these questions:
How many people with IBD does this doctor see each year? You want to work with a doctor who sees a lot of people with Crohn’s. They understand what's involved in treating people with this condition and have more experience prescribing medications to control the disease.
Does your insurance cover the doctor? Call your insurance company and the doctor’s office to confirm that your health plan will cover the doctor’s services. You may also need to check if she is “in network,” because if she’s not, you’ll probably pay more for the visit.
Where is the doctor’s office located, and what are her hours? Choose a doctor near your home, if possible, to give yourself peace of mind that there’s help nearby when you need it.
Do you feel that the doctor listens to you and respects you? Crohn's can be hard to talk about. And because it affects so many aspects of your life, it's important to choose a doctor you’re comfortable with.
Which hospital or treatment center does the doctor work with? You may want to choose a hospital at the same time you select a doctor. Although not everyone with Crohn’s disease will need to go to the hospital, it can happen, especially when you’ve had the condition for a long time. It’s better to pick a place when you feel well than when you’re in the middle of a flare.
Learn More About Crohn’s
Knowledge is power. When you have a serious health condition like Crohn’s disease, it’s important to find out all you can about it.
Your doctor should be your first resource. It helps to write down your questions before your visit and bring them with you, so you remember to ask all of them. You can also ask a relative or friend to come with you to your appointments and help you remember what your doctor said.
Talk With Family and Friends
Explain your Crohn's disease to those close to you in a matter-of-fact way. Let them know it can cause attacks of pain and diarrhea. This will help them understand why you often need to use the bathroom or may not feel up to socializing, for example.
When people know what you're going through, you can turn to them for support and reassurance. They can be there for you during disease flare-ups, when you need extra help with grocery shopping or child care, or need a ride to a doctor’s appointment.
People may not know what they can do to support you. So have some ideas ready, if they ask.
If you work outside the home, you might want to talk to your supervisor and trusted co-workers about your condition. This will help explain missed days or frequent bathroom breaks.
Read up on the Family and Medical Leave Act, so you know your rights in case you need to take off from work for a while. Also look into the Americans With Disabilities Act, which protects you from job discrimination and can help you get your employer to provide the things you need to get your job done.
You may also want to join a support group where you can talk with other people who have Crohn's. To find one, ask your doctor. The Crohn's & Colitis Foundation of America has an online support group where you can get tips and advice from people who've managed their condition for years.
Pay Attention to Your Body
As you start treatment, note what kind of symptoms you have and when they happen. Do you always have diarrhea after you eat? Are your symptoms more active at a certain time of day? If you know when you're more likely to have symptoms, you can plan your day around them.
Take note of any foods that affect your bowel problems. Your diet doesn't cause Crohn's, but some dishes may make symptoms worse.
For example, many people with Crohn’s need to avoid high-fiber foods like seeds, nuts, popcorn, corn, and raw fruits and vegetables, as well as spicy, fried, and greasy foods. Keep a food-and-symptom diary to help you track what causes problems so that you can avoid those items.
Ask your doctor about working with a registered dietitian (RD). He can review your food diary to decide if you're eating a balanced diet. He can also help you plan meals so you get all the nutrients you need and can enjoy food that tastes great.
Notice how stress affects your symptoms, too. For many people, it triggers flare-ups.
Do you worry about leaving home because of Crohn's symptoms like diarrhea, pain, and cramping? That’s understandable, especially as you learn how the condition affects you. But don’t feel like you have to be stuck at home all the time. A little planning will help you maintain daily routine in place as much as possible.
Find the restrooms in public places like restaurants and shopping malls, at highway rest areas, and anywhere you tend to go every day. This can help you keep a mental map of bathroom stops when you're out and about.
Pack a travel kit that includes a spare set of underwear, toilet tissue, wet wipes, a couple of zip-top plastic bags, and deodorizer. You may never need it, but knowing it’s there can give you peace of mind.
Ask a trusted friend to be on-call to come get you should you find yourself in a tough situation with your Crohn’s. Knowing that they’re there for you can help you be ready for anything.