I Think I Have IBD—Now What?
Figuring out if you have inflammatory bowel disease is the first step—what to do comes next. Relax, we've got your game plan!
Your symptoms are frustrating, persistent, and painful—and Dr. Google has led you to a daunting thought: Could you have inflammatory bowel disease (IBD), a chronic inflammatory condition of the digestive system? There’s a little relief in finally being able to put a name to your pain—but there are other emotions, too. Anxiety and stress, for starters.
Before you let those racing thoughts bleed into panic, take a minute to think things through. First step: Confirming that what you suspect is indeed the case. Second step: Finding out how to get the best treatment, so you can stay firmly in control of managing your symptoms.
The following list will help you get clarity about what’s really going on with your health, whether your symptoms are likely IBD, and what happens next. Should you be officially diagnosed, soon you’ll be a pro at this whole managing-a-chronic-illness thing—trust us.
1. Identify Your Symptoms
While your mind may be going a mile a minute, speeding into the future with all of its “what ifs,” it’s wise to slow things down and start with the basics—like making a list of the reasons you think you may have Crohn’s disease or ulcerative colitis (UC), the two major types of IBD. Some of the big symptoms you’ll hear about with IBD are diarrhea, rectal bleeding, abdominal pain, and fatigue—but IBD can look different from person to person.
Even if you tick all the boxes, remember that only a medical professional can officially diagnose you with IBD. Create a symptoms log that tracks how you feel over several days and share it with your doctor at your next appointment. The log will also come in handy down the road as you try to figure out potential triggers that set off your GI symptoms.
Important note before moving forward: Many newbies confuse IBD with another condition called IBS, a.k.a. irritable bowel syndrome. These are very, very different conditions and have different treatments. You can learn more about the differences here.
2. Find a Gastroenterologist
Now that you’ve identified your symptoms, it’s time to connect with a health care professional. What you need is a gastroenterologist—sometimes called a “GI doctor”—someone who specializes in conditions of the digestive system. If you’re not sure how to find this sort of specialist, here are a few tips:
Start with your primary care provider. Your everyday doc can be an important resource for getting to the bottom of your symptoms—and likely will have a GI doctor to refer you to, simplifying your search.
Look for a specialist in your network. If you have health insurance, your provider’s website is a great tool to help you find a gastroenterologist. Many have databases of in-network doctors you can search. The Crohn’s and Colitis Foundation also has a database you can search that includes doctors who are members of the organization, meaning they likely specialize in IBD.
Consider the things that are important to you. For example, how far are you willing to travel to see your doctor? Do you want someone who is the same gender as you? Often the search feature on your insurance website will have fields for you to specify these types of things to help zero in your search.
3. Schedule an Appointment
You’ve found a promising gastroenterologist—now it’s time to call and schedule your first appointment. When you call, don’t be afraid to ask directly whether the doctor has experience treating Crohn’s and UC. (The answer is probably yes, but if it’s not, you’re better off continuing your doc search.) Let the receptionist on the phone know what symptoms you’re having and make an appointment.
Some GI docs may have long wait times for new patients seeking appointments, so it can help to identify a few potential M.D.s and go with the one that has availability the soonest.
4. Prepare for Your Appointment
When it comes time for your first appointment, bring along that log of symptoms you’ve been keeping. Any background information you have (what you’re feeling, time of day those feelings occur, how often, any foods associated with them, and so on) can help your doctor get to the bottom of your problems.
It’s also smart to bring a list of questions you want to ask your doctor. In-the-moment stress of being in a doctor’s office can make you forget the important stuff you wanted to talk about, so prepare a list beforehand in order to leave the office armed with knowledge.
Not sure what to ask? Here are some questions that may be helpful:
What tests am I going to need to get a diagnosis?
What are the treatment options for IBD?
Should I make any changes to my diet or exercise routine?
What symptoms should be considered an emergency?
Is there anything I can do starting today to get relief?
What else do I need to know before I leave your office today?
5. Develop an Action Plan
You think you’ve got questions? Your doctor does, too! During your visit, your M.D. will ask about your medical history, your family’s medical history, your symptoms, and more. But it’s not all talk—your doctor will do a physical exam and possibly a blood test. It’s unlikely you’ll get a diagnosis during your first appointment—instead, you’ll talk about a plan to narrow down what’s going on so you can get the diagnosis you need. For example, you may discuss follow up appointments for further blood tests, stool tests, endoscopy tests like colonoscopy, imaging tests like X-rays, or others. These tests will look for signs of inflammation, infection, anemia, or nutritional deficiencies. All of this will help your doctor gather information to help you get a diagnosis.
In addition to testing, your doctor will likely talk with you about options for getting symptom relief ASAP. This might involve taking new medications, making changes to your diet, or learning about different self-care methods. Once you get an official diagnosis, you’ll work together to come up with a short-term and long-term treatment plan to help you get your disease under control and on the way to feeling your best.
6. Learn More About IBD
With your official diagnosis in hand, you’ve taken the first step to getting on top of your disease and all the uncomfortable symptoms you’ve been experiencing. Time for the next step: Learning the ins and outs of your condition—knowledge is power, after all. Start with HealthCentral’s comprehensive look at Crohn’s and UC, where you’ll discover more about the causes and treatments for these conditions.
- Inflammatory Bowel Disease: Weill Cornell Medicine. (n.d.). “Inflammatory Bowel Disease.” weillcornell.org/inflammatory-bowel-disease
- IBD Symptoms: Centers for Disease Control and Prevention. (2018). “What Is Inflammatory Bowel Disease?” cdc.gov/ibd/what-is-ibd.htm
- Crohn’s Symptoms: Crohn’s and Colitis Foundation. (n.d.). “Signs and Symptoms of Crohn’s Disease.” crohnscolitisfoundation.org/what-is-crohns-disease/symptoms