Coping with Crohn's Disease: Steps to Take When You’re First Diagnosed
Although the full title of this article is, Reducing Flares in Crohn's Disease - The Role of the Biologics, it contains excellent information and tips about Crohn's disease in general.
For those with children on biologics it does contain a topic about paying for biologics.
Crohn’s Disease: Steps to Take When You’re First Diagnosed
WebMD Medical Reference
Reviewed By Louise Chang, MD
Being diagnosed with Crohn’s disease can be distressing. You may be afraid that you’ll have to quit working or stop traveling. You may wonder how having an inflammatory bowel disease (IBD) will affect your relationships and social life. You may think you’ll never learn to cope with unpleasant symptoms such as persistent diarrhea and stomach cramps.
The difficult truth is that having Crohn’s disease won’t be easy. It will affect almost every part of your life. But by learning all you can about the disease and how to manage it, you can keep doing the things you love.
Here are some important steps you can take now that can help you cope with this ongoing health condition.
Find a Doctor and Treatment Center
One of the most important first steps is to find an experienced gastroenterologist. A gastroenterologist is a doctor who specializes in treating the digestive tract. Start by asking your primary doctor who he or she recommends. You can also look up doctors who specialize in treating Crohn’s disease and other inflammatory bowel diseases (IBDs) on the web sites of these organizations:
The American College of Gastroenterology
The American Gastroenterological Association
The Crohn’s and Colitis Foundation of American
When choosing a doctor, consider the following questions:
How many people with IBD does this doctor see each year? If possible, you want to work with a doctor who sees a lot of people with Crohn’s. These doctors have more experience prescribing the medicines to control the disease and understand the nuances involved in treating people with this condition.
Is the doctor covered by your insurance? It’s a good idea to call both your insurance company and the doctor’s office to confirm that your health plan will cover the doctor’s services. Don’t just rely on the health plan’s Web site to determine if the doctor is covered.
Where is the doctor’s office located and what are his or her office hours? When you are having a flare-up of symptoms, you won’t want to be away from a bathroom for very long. Choosing a doctor near your home can give you peace of mind that help is nearby when you need it.
Do you feel that the doctor listens to and respects you? Crohn's can be hard to talk about. And because it affects so many aspects of your life, it is especially important to choose a doctor you can easily talk with openly and honestly.
Which hospital or treatment center is the doctor affiliated with? You may want to choose a hospital at the same time you choose a doctor. While not everyone with Crohn’s disease will need to go to the hospital, many do, especially when they have had the condition for a long time. It’s better to decide on a hospital when you feel well instead of when you are dealing with the discomfort of a flare.
Educate Yourself About Crohn’s
When you have a serious health condition like Crohn’s disease, it’s important to learn all you can about it. Of course, your doctor should be your first resource for learning about your condition and treatment options. It may help to write down your questions to make sure you don’t leave any concerns unanswered. You can also ask a relative or friend to come with you to your appointments to make sure you remember everything your doctor has said.
As you learn more about your condition, you may hear about men and women who have had a hard time coping with their illness. Reading about these stories may make you feel hopeless. It’s very important to realize that no two people experience Crohn’s disease in the same way. Just because some people have a severe form of the disease doesn’t mean that you will. Instead, try to focus on learning what you can do to manage your condition.
Talk With Family and Friends
Not everyone is comfortable sharing the fact that they have a serious health condition. But doing so can ease the extra stress of trying to hide it. Explaining Crohn’s disease in a matter-of-fact way, that it can cause attacks of pain and diarrhea, can help those close to you understand why you often need to use the bathroom or don’t feel up to socializing. Letting family and friends know what you are going through also means that you can turn to them for support and reassurance. They can be there for you during disease flares when you need extra help with grocery shopping or child care, or need a ride to doctor’s appointments.
You may also want to consider talking with your supervisor at work and trusted co-workers about your condition. This will go a long way toward explaining extended absences at work and frequent bathroom breaks. You should also read up on the Family and Medical Leave Act (FMLA) so that you know your rights in the event that you need to take off work for an extended period of time.
Joining a support group can provide you with the kind of help you can only get from people who know what you are going through. Ask your doctor if there are support groups in your area. The CCFA has an online support group where you can get tips and advice from people who have been managing their condition for years.
Pay Attention to Your Body
While no one knows what exactly causes Crohn’s disease, there are certain factors that can make symptoms of pain, cramping, and diarrhea worse. As you begin treatment, take note of what kind of symptoms you have and when. Do you always have diarrhea after eating? Are symptoms usually more active at a specific time of day? By recognizing when you are more likely to have symptoms, you can plan your day around them.
Also note which, if any, foods affect your bowel problems. While food does not cause the inflammation in your intestines, certain foods may make symptoms worse. For example, many people with Crohn’s disease find they need to avoid high-fiber foods such as seeds, nuts, popcorn, and corn, as well as spicy, fried, and greasy foods. Keeping a food and symptom diary can help you track what foods cause problems so that you can avoid them.
You may want to talk with your doctor about working with a registered dietitian (RD). He or she can review your food diary to determine whether you are eating a balanced diet. An RD can help you plan meals so that you get a wide range of nutritious foods.
Also pay attention to how stress affects your symptoms. Many people with Crohn’s find that stress is a trigger for flares. Having Crohn’s can also be stressful. If stress causes added problems for you, look into learning relaxation techniques such as breathing exercises, tai chi, yoga, meditation, or guided imagery.
Plan Ahead
The classic symptoms of Crohn’s disease -- persistent diarrhea, pain, and cramping -- can make you feel hesitant to stray very far from home. That’s understandable early on when you are learning how your condition affects you. But don’t get into the habit of cutting yourself off from the rest of the world. Planning ahead can help give you a sense of security so that you can go about your daily routine as much as possible.
Locate restrooms in public areas such as restaurants, shopping malls, highway rest areas, and anywhere you tend to go in your local area. This can help you keep a mental map of bathroom stops in mind when you are out and about. There is even an application for some handheld devices that can help you locate restrooms in your area.
Pack a travel kit that includes a spare set of underwear, toilet tissue, wipes, a couple of zip-top bags, and deodorizer. You may never need it, but just knowing it’s there if you do have an accident can help give you peace of mind.
Ask a trusted friend to be on-call to come get you should you find yourself in a difficult situation.
Focus on the Future
The fact that you have been diagnosed with Crohn’s disease may be all you can think about now. But it won’t always be that way. As you learn about your condition and grow to accept it, having an IBD will become part of who you are -- but it won’t define you. Keep your focus on your future and remember: Having Crohn’s disease does not have to control your life.
Full article:
http://www.webmd.com/ibd-crohns-disease/cd-biologics-10/cd-mistakes-with-crohns
