What to Do After a Crohn's Disease Diagnosis: Learn About it so You Can Be Proactive

So, today your doctor told you that you have Crohn's disease. What should you do? Do you want to cry? Do you wish it would just go away? Should you hand your fate to the best doctor you can find?

When I learned I had Crohn's, my first reaction was to hope it would go away. It didn't, of course; so far there is no cure, only symptomatic treatment. When the disease started causing me serious problems, I was inclined to find a good doctor and just do what he told me. I quickly learned that very few doctors know all there is to know about Crohn's disease, and I changed my course.

The smartest thing to do when you learn that you have Crohn's, or any chronic illness, is to learn everything you can about that illness, its symptoms, and possible treatments and medications. Use the internet, the library, your doctors, and others who have your illness. If you can become an expert in your illness, you'll lose some of your feelings of powerlessness and of victimhood. You can take an active part in your own healthcare, not just accept what you're told. Don't ever be afraid to ask questions, and don't be afraid to make suggestions to your doctors. It is your body; it is your illness.

Look for a Crohn's support group, and if there's one in your area, join it. You'll learn a lot from the other members, and they will understand better than anyone else what you're going through. Your family and friends may love you, but they won't truly understand what you're dealing the way other people who are dealing with the same thing can.

I studied, and I still study. There are new medications and new treatments appearing almost monthly. I do regular internet searches, and I check the medical journals at the library. Although initially I found medical journal articles very difficult to read, they're getting easier. And I'm learning all the time.

It's important to find a doctor who isn't offended when you decide to take a role in your own healthcare. Some doctors (thankfully not mine) have a sort of "god complex:" they think that they know everything, you know nothing, and it's better for everyone if you just listen to them. I've found that that's not necessarily true. Sometimes reading an article, whether in a journal or on-line, can raise more questions than it answers. Take those questions to your doctor. Ask him why he's prescribing a particular medicine, and what the side effects are, and what other medications it might interact with. Some doctors don't like being questioned; a good doctor is pleased to see that you're taking some responsibility for your own health.

Taking responsibility for your own health is my goal with Crohn's disease, and with other illnesses that I have. By that I don't mean that I know more than my doctor, or that I'll refuse to take medications he prescribes or follow his suggestions. Rather, it means that I know that no one can "fix" me. A doctor can prescribe, make suggestions, and do surgeries; he or she can't be with me every day. I have to decide what medicines I will take, and then to take them as they're prescribed. I have to learn what the best diet options are for me, what foods I can eat and what will make me sick, and follow through with that, or be prepared to take the consequences. If I eat corn on the cob and end up with painful cramps and days of diarrhea, I can't blame my doctor because he didn't give me a list of "safe" foods. It was my responsibility to learn what foods are safe for me, because it was my responsibility to learn that what some Crohn's patients can tolerate aren't tolerated by others.

I have to learn what exercise I can tolerate and when. Getting no exercise will make my body weaker, but it will also make my immune system weaker, and give Crohn's a stronger influence on me. My doctor isn't going to tell me to get off the couch and walk every day; I have to do that for myself. There are days when I simply can't walk, either because the diarrhea is too severe, or because my abdominal cramps are so severe that I can't stand up straight. When I can walk, I need to go outside in fresh air and do it.

If you learn everything you can about Crohn's, from symptoms to treatments to non-traditional therapies that work for you, and are pro-active about taking care of yourself instead of becoming reliant on your doctors, your course will be easier. You can't cure yourself, but you can make yourself feel better. At the very least, you can feel more in control of your illness, and not controlled by it. And believe me, that's a very good feeling.