The key to successfully living with ulcerative colitis (UC) is a close partnership with your doctor. From remission to flare, your doctor should be there.
That's because of the chronic nature of UC, says Thomas Cataldo, MD. He's a staff surgeon in colon and rectal surgery at Beth Israel Deaconess Medical Center in Boston. Ulcerative colitis is a relapse-and-remitting condition, which means it comes and goes. You and your doctor need to communicate well through it all.
"UC can be a long and complicated road, but with a good gastroenterologist by your side, it doesn't have to be a hard road or a painful one," he says.
Discuss Your Triggers
To stay in remission, most people with UC need to take drugs that lessen inflammation in their digestive tract or drugs that suppress the immune system, or both.
When flares start, it could be that your doctor needs to change your dosages. Medications -- prescription and over the counter alike -- are a common flare trigger. Not taking meds when on schedule, or at all, can also bring on a flare. That's why it's important to be honest with your doctor about how you're taking drugs. A medical condition like an infection could also trigger a flare, so you and your doctor should talk about your overall health.
"The biggest thing is communication," Cataldo says. "Your doctor will need to know everything that's happening."
If you've been keeping a food diary to help identify foods that trigger flares, bring it to the checkup. Not only can it help you create an "eat this, not that" list, it can also help your doctor figure out if you're staying well-nourished during flares.
"Some people stop eating to make their flares stop, and that can be very harmful," Cataldo says.
Observe Closely, Then Report
To help your doctor make the best decisions for you, Cataldo suggests you keep very close track of how often you go to the bathroom, how much volume comes out, and how much blood you might be losing.
"Is it 100 tiny squirts a day, or 10 squirts with large volume?" says Cataldo. "Also, what does the blood look like? Is it watery or is it clots? Don't just poop and flush. Observe what you see. Keep a record."
Bring some stools for your doctor when you visit, too, he says.
Your doctor will also want to know what's happening on your scale. Weigh yourself first thing in the morning, Cataldo says, then later in the day. If your weight drops, that's fluid loss, and a sign that you're becoming dehydrated.
Also, pay close attention to your urine. Is it getting darker? Or are you not urinating as much as you normally would? This is also a dehydration signal you should tell your doctor about.
Consider the Experimental
If the usual medicines for UC don't seem to be helping, you can ask your doctor if there are other treatments for you, or ask them to check with a colleague at a nearby university that's doing research on UC, says Leyla J. Ghazi, MD. You might have access to cutting-edge treatments and closely monitored care.
"At universities, you may have access to … treatments that may help when the standard treatments don't," says Ghazi. She is a gastroenterologist who specializes in inflammatory bowel disease at the University of Maryland School of Medicine in Baltimore. "Your doctor can discuss your care and work with other gastroenterologists there, too.
The bottom line? Make sure you like and trust your doctor, and stay in touch, especially during flares.