A key way to handle ulcerative colitis (UC) is to build a strong partnership with your medical team. It's a long-lasting, complicated disease. Your symptoms will flare up, then wane. You'll want to keep your doctor in the loop to help you manage it.
Tell It Like It Is
Good communication helps a lot. So be open about your symptoms and concerns. Don't say you're "fine" or "OK" if you're not. And if you have flares, bring that up. When you keep your doctor informed, you're more likely to enjoy longer periods without flare-ups.
When flares start, your doctor may need to adjust your treatment doses. Your symptoms can get worse if you don't take your meds on schedule or if you stop taking them. Tell him about all the medications you take, including over-the-counter drugs, in case they are triggers for flares.
A problem like an infection could spell trouble, too. Let your doctor know about anything that's going on with your health, even if it doesn't seem to be related to UC.
Write It Down
Keep a journal of all your health-related information so you can bring it to your next visit with your doctor. He'll want to know what foods you've been eating, and any flare triggers you've noticed.
Not only can it help you create an "eat this, not that" list, it can also help your doctor tell if you're getting the nutrition you need.
It also helps to track how often you go to the bathroom, how much comes out, and the amount of blood you might be losing. Take notes you can understand, like, "Is it 100 tiny squirts a day or 10 squirts with large volume?"
Observe what the blood looks like. Is it watery or is it clots? Note what you see. You can also ask your doctor if you need to bring stool samples to your checkup.
Your doctor will also want to know your weight. If you're having a flare or a bout of diarrhea, you may want to weigh yourself more than once a day. If you notice a drop in your weight during those times, that could mean you're dehydrated, which is risky for your health. Even when your symptoms are under control, it's a good idea to keep tabs on your weight in general, because UC makes it harder to absorb nutrients from the foods you eat.
Make sure to keep track of your health on good days and bad.
Consider a Clinical Trial
If you want to get personally involved in UC research, you can ask your doctor if there are clinical trials you could consider. These studies test new drugs to see if they're safe and if they work. They're often a way for people to try new medicine that isn't available to everyone. Your doctor can tell you what's involved and if one of these trials might be a good fit for you.