Being diagnosed with ulcerative colitis (UC) can feel daunting. UC is an autoimmune bowel disease that triggers persistent inflammation in the colon and rectum and can cause a range of uncomfortable gastrointestinal symptoms. As with any new diagnosis, it helps to know the right questions to ask so you can move quickly toward the best care.
“I love when my patients come with questions about their ulcerative colitis,” says gastroenterologist. Dr Raj Devarajan. “It shows they understand the condition and how to look after themselves. It also helps them decide if they like and trust their doctor, which supports sticking with the plan.”
To help you get clear on your diagnosis and next steps, gastroenterologists share the key questions they want every person with UC to ask.
1. What type of ulcerative colitis do I have?
UC can affect different parts of the large bowel. Clinicians generally describe three main patterns:
- Ulcerative proctitis — inflammation limited to the rectum
- Left-sided colitis — continuous inflammation starting at the rectum and extending into the descending colon
- Extensive colitis — inflammation involving most or all of the colon
Your doctor will use a grading system to classify severity and then translate that into plain language such as mild, moderate or severe.
“It’s important to know where you sit so you can recognise symptoms that mean you should book an appointment straight away,” says Dr Devarajan. “If disease activity moves into the severe range, acute treatment should start quickly. The aim is to shut a flare down fast and avoid complications like surgery.”
2. How will I know if I’m in remission?
People with UC often cycle between flares and remission. The encouraging news is that remission can last for long stretches. “After a flare, your doctor will usually check that the injury seen before treatment has improved,” says Dr Matilda Hagan. That may involve symptom review, blood tests or stool markers such as faecal calprotectin, and sometimes a scope to look at the bowel lining.
You can feel better even when inflammation lingers, so treatment may be adjusted if the colon or rectum has not healed. The goal is both symptom control and mucosal healing. “When you feel well and the lining has healed, you have the best chance of staying well longer,” Dr Hagan says.
3. What did I do to get ulcerative colitis?
UC is not your fault. “You did not cause this,” says Dr Hagan. “Genetic makeup and an overactive immune response drive the condition, with the immune system injuring the intestinal lining and not switching off.” Understanding this can make it easier to accept the diagnosis and stick with care.
UC is a long-term condition, so partnership matters. Work with your GP or specialist, take medicines as prescribed and flag changes in symptoms early. That shared approach helps prevent flares and keeps you on track.
4. How often should I come back for check-ups?
Frequency depends on disease activity, says Dr Hagan. If symptoms persist, reviews may be needed every eight weeks. If you are well and stable, annual gastroenterology visits may be OK.
Plan follow-up with your health care provider. They know your history and how much discomfort you tend to tolerate. “Many people with long-standing UC underplay symptoms that should be red flags,” says Dr Devarajan. Regular reviews also allow objective monitoring with blood tests and stool markers, such as faecal calprotectin, to gauge inflammation even when you feel better.
5. When should I be worried that my treatment isn’t working?
Set clear goals with your doctor from the start, says Dr Devarajan. With a new UC diagnosis you might have blood and mucus in the stool, diarrhoea, cramps and poor appetite. Managing symptoms matters, but agree on what success looks like for you.
For example, your priority might be getting through morning meetings without a bathroom break or sleeping through the night. Use these targets to judge progress. “If your goals are not being met and symptoms persist, the treatment isn’t working,” says Dr Devarajan. Contact your team to adjust the plan.
6. Does colitis put me at risk for other conditions?
With UC you need to be especially vigilant about colorectal cancer screening. Research suggests people with UC are two to three times more likely to develop colorectal cancer than those without UC, and risk increases with disease duration. “Ongoing inflammation can repeatedly injure cells in the bowel lining, raising the chance of changes that may lead to cancer,” says Dr Devarajan.
The upside: colorectal cancer is often highly treatable when found early. That is why most people with UC have regular surveillance colonoscopies as advised by their specialist, which can detect precancerous changes and early cancers.
7. Are there clinical trials I may be eligible for?
Clinical trials test new treatments to determine safety and effectiveness. Taking part can sometimes provide early access to promising options if standard therapies have not worked, says Dr Devarajan. Your specialist will know which trials you may suit.
It is important to understand the design. Some studies include a placebo arm, so you may receive an inactive treatment without knowing it. If you are interested, ask your doctor about options and review the pros and cons together. You can also search a recognised trials registry, then discuss whether a study fits your needs and circumstances.
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