One of the keys to handling your ulcerative colitis (UC) is 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 in contact with your doctor to help you manage it.
How Are You — Really?
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.
Most people with UC need to take meds that fight inflammation in their digestive tract, turn down their immune systems, or both.
When flares start, it could be that your doctor needs to change your treatment doses. Your symptoms can get worse if you don’t take your meds on schedule or if you stop taking them. Tell your doctor about everything you take, including over-the-counter medicines, in case they are triggers.
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 your UC.
Make a plan with your doctor for when and how you will contact them when you have a flare-up or an emergency. This can be as simple as asking a few questions:
- What should you do if you notice a serious flare-up of symptoms?
- Which symptoms are considered an emergency?
- Should you contact your doctor in an emergency?
- If so, what’s the best way to contact them?
- What should you do if you can’t make contact?
- If you can’t see the doctor right away, what should you do?
- Are there over-the-counter options that might help?
Write It Down
Keep a journal of all your health-related information so you can bring it to your next visit with your doctor. They’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 in 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.
Also, pay close attention to your urine. Is it darker than it used to be? Or do you not pee as much as you normally would? Those are other symptoms of dehydration.
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.
- Thomas Cataldo, MD, visiting assistant professor of surgery, Harvard Medical School; staff surgeon, colon and rectal surgery, Beth Israel Deaconess Medical Center, Boston.
- CDC: “Inflammatory Bowel Disease."
- Leyla J. Ghazi, assistant professor of medicine, University of Maryland School of Medicine, Baltimore.
- Uptodate.com: “Ulcerative Colitis in Adults, the Basics."
- National Institutes of Health: “Ulcerative Colitis.”
- Crohn’s and Colitis Foundation: “Managing Flares and IBD Symptoms.”