So You've Just Been Diagnosed with Crohn's or UC. Now What?
Being diagnosed with Crohn’s disease or ulcerative colitis is a life-changing event. There are likely so many things going through your head that you’re not sure where to start. Here are some steps you can take to help you move forward with a new diagnosis.
Research inflammatory bowel disease, Crohn's, or ulcerative colitis
The fact that you’re reading this is already a good start! Being informed is an important aspect of living with a chronic illness. Regardless of how good your doctor is, at the end of the day, you are in charge of your health care. Understanding what your disease is, and what your disease is not, will help you make sense of symptoms and understand how you are responding to treatment.
But make sure you are getting information from reputable sources. Healthcare organizations and government agencies are a safe bet. Anything with a .edu or .gov web address is a safe bet. Just because a site has .org, does not mean the information is accurate. You will find on InflammatoryBowelDisease.net, at the end of many articles, there is a “View Resources” option, so you know the information is coming from trustworthy sources.
Ask questions and share opinions with your doctor
Once you’ve done your research, be sure to ask questions, discuss options and be thorough in discussing how you are feeling with your doctor. It’s easy for your opinion to get lost amid your physicians and sometimes even your family. You know your body better than anybody else does, so use your voice.
If speaking up is not something you are comfortable with, consider seeking out someone to be your advocate. This could be a family member or friend, or you can look into a patient advocacy program. An advocate can help make sure your voice is heard.
Find a support system
When I was first diagnosed, I was alone. Yes, I had a great support group in my family and friends, but no one else who understood what I was going through. It would be 13 years before I started reaching out to others and figuring out that I wasn’t in this by myself. There is an incredible community of support out there.
You have the option of finding an in-person support group or joining an online community. That’s one of the great advantages of today’s technology: the ability to connect with others all around the world. You will find others who have had a similar journey to yours whom you can commiserate with. You will find answers to some of your questions. You will find advice for almost anything you can think of. But mostly, you will find a group of people who understand exactly what it is that you’re going through. It’s a great feeling to have that.
Get involved in the IBD community
Once you begin to understand more about Crohn's or ulcerative colitis, there are many ways you can get involved. In the same way you received support, you can be there to give it. Those same online and in-person groups provide an opportunity for reaching out to others.
You can also go more public by sharing information and experiences about IBD on your personal profiles or on a blog. This will help educate others on what these diseases are and how many people they affect. Awareness is an important step in creating a society that is more understanding and supportive of those living with IBD.
If going public isn’t your style, giving donations to reputable organizations can also help. There are a number of organizations, some focused on patient care, patient and community education or medical research, that can put your dollars to good use. Some organizations also provide opportunity for joining in local events in order to raise awareness and funds. This can be a great way to meet others, as well.
A new diagnosis is a lot to take in, but know that there is a great group of people out there ready to help you through it. Now take a deep breath. You’ve got this!
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