7 Questions every doctor wants you to ask after an ulcerative colitis diagnosis
The answers can help you get the best treatment and feel better, fast.
After an ulcerative colitis (UC) diagnosis, you’ll find yourself immersed in a new world—trying to understand your autoimmune disease, sort through various treatment options, and work with your doctor to chart a path forward. And while you’ll find all kinds of information about your condition online, asking your doctor some key questions about the disease can go a long way toward helping you get the best care, says Raj Devarajan, M.D., a board-certified gastroenterologist and president of the Massachusetts Gastroenterology Association.
“I love when my patients come to me with questions about their ulcerative colitis,” says Dr. Devarajan. “It’s a great way to make sure they have a good understanding of the disease and how to best take care of themselves. It also gives patients a chance to make sure they like and trust their doctor, which can help ensure they follow their treatment plan.”
To help you get to the heart of what you need to know about your new diagnosis, we asked Dr. Devarajan and Matilda Hagan, M.D., co-director for the Center for Inflammatory Bowel and Colorectal Diseases at Mercy Medical Center in Baltimore, what UC questions they want to hear from their patients.
1. What type of ulcerative colitis do I have?
Ulcerative colitis is a form of inflammatory bowel disease that can affect different parts of the colon and rectum, according to the Crohn’s and Colitis Foundation. There are three main categories of the condition:
- Ulcerative proctitis, where bowel inflammation is limited to the rectum.
- Left-sided colitis, where continuous inflammation begins at the rectum and extends into the colon
- Extensive colitis, where the entire colon is affected
While your doctor will use a quantifiable grading system for your type of UC, Dr. Devarajan says most practitioners will translate that to more understandable terms: mild, moderate, or severe.
“It’s important to understand where you stand so you can be aware of symptoms that should prompt you to make an appointment with your doctor immediately,” he says. “If you move into the severe range, it’s crucial to begin acute treatment as quickly as possible. We want to shut a flare down immediately so that the inflammation doesn’t require extreme treatment, such as surgery.”
2. How will I know if I’m in remission?
If you’re like most ulcerative colitis patients, you’ll have periods where you’re relatively symptom-free as well as times when your symptoms will return—a.k.a. “flares.” The good news is that those periods of remission can last a while, says Dr. Hagan.
“One of the things it’s important to understand about remission after a flare is that your doctor will likely want to examine you to make sure the injury we saw before treatment has improved,” she says. “If it has, we know you’re on the right treatment plan. If we still see a significant amount of injury in your colon or rectum, we have to tweak your medications—even if you feel better.”
The key with remission is to make sure you feel better and the lining of your colon and/or rectum has healed. “When both of those have happened, you’ve got the best shot at feeling better, longer,” Dr. Hagan explains.
3. What did I do to get ulcerative colitis?
Dr. Hagan says one of the most important things to understand is that you didn’t do anything to bring on the disease. “If you have ulcerative colitis, know that you’re in this position because of your genetic makeup,” says Dr. Hagan. “Your immune system turned ‘on’ to the point that it’s injuring your intestinal lining and it won’t turn ‘off.’” Understanding that can help you take your diagnosis in stride—and increase the odds that you’ll be compliant with your treatment plan.
“It’s so important to feel like you’re partnering with your doctor because ulcerative colitis is something you will have to deal with for the rest of your life,” she continues. “We can only do so much to make you better. You have to be part of it by taking your medication and letting us know when symptoms happen.”
4. How often should I come back for check-ups?
This largely depends on whether or not you’re in remission, says Dr. Hagan. If you’re not feeling well, your doctor may want to see you every eight weeks. If you’re feeling great, annual visits to your gastroenterologist might be OK.
Working out a plan with your healthcare provider is key, largely because he or she will have a clear picture of your history—and your tolerance for symptoms, adds Dr. Devarajan. “Many ulcerative colitis patients who’ve suffered from symptoms for a while will tolerate more pain than the average person, and they might brush off symptoms as no big deal that should be a red flag,” he says.
If you’re someone who might be less inclined to get help when you really need it, your doctor might want to see you regularly so he can use objective markers found in bloodwork and stool samples to gauge the severity of your condition.
5. When should I be worried treatment isn’t working?
To understand whether or not you’re on the right medication or other treatment protocol, it helps to first know your objective, says Dr. Devarajan. “Let’s say you have a new diagnosis of ulcerative colitis and you have blood and mucus in your stool, diarrhea, cramps, and you don’t feel like eating,” he says. “While managing all of these symptoms is important, what you really want to do is make sure your doctor knows what you really care about.”
For example, is it your priority to manage your symptoms so that you can stay in your morning meetings without needing a bathroom break? Do you want to avoid getting up in the middle of the night so you can finally get a solid eight hours of shut-eye? “Choosing your primary objectives gives you something to gauge how well a treatment protocol is working,” says Dr. Devarajan. “If your symptoms persist, the treatment isn’t working.”
6. Does colitis put me at risk for other conditions?
When you have UC, you’ll need to be especially vigilant about screenings for colorectal cancer. In fact, the risk of colorectal cancer patients with ulcerative colitis is estimated to be 2 percent after 10 years, 8 percent after 20 years, and 18 percent after 30 years of having the disease, according to research. “Inflammation of the colon can cause continuous injury to cells in the intestinal lining, which increases the chance of irregularities that may lead to cancer,” says Dr. Devarajan.
The good news is that colorectal cancer is a highly treatable disease when it’s found early—which is why most ulcerative colitis patients undergo regular colonoscopies, which can identify precancerous tissue and early cancers, says Dr. Devarajan.
7. Are there clinical trials I may be eligible for?
When researchers are determining the safest, most effective way to treat a condition, they run a clinical trial evaluation—and the results are a key component of the U.S. Food and Drug Administration’s drug approval process. Finding people to participate in these trials is key for the researchers, and the upside for you is that it might mean you have access to a helpful treatment before it’s widely available, says Dr. Devarajan.
“Your specialist will likely be aware of the clinical trials that you may be a good candidate for joining, which can be especially great if you’ve exhausted all of your other treatment options,” he says. “But it’s also important to know that if you join a trial, you may be in the placebo arm without knowing it, which means may receive a fake or inactive treatment.”
Original article here.