The first symptoms of your ulcerative colitis may have appeared suddenly. They might have been the cause of persistent inflammation due to a viral or bacterial infection, or maybe something else triggered them. Although doctors don't know for sure what causes ulcerative colitis in every case, once you get the diagnosis, you'll have the condition for life.
As with any chronic illness, learning about it, working with your care team, taking care of your health, and having the best treatment for your specific case are key to improving your well-being.
Don't Ignore the Symptoms
Like Crohn's disease, ulcerative colitis is an inflammatory bowel disease.
Both cause inflammation of the gastrointestinal system, but ulcerative colitis targets the colon and rectum and affects their lining. This causes small sores or ulcers to form in the large intestine.
The first symptoms of ulcerative colitis include:
- Diarrhea (with or without blood)
- Increased frequency of diarrhea (between one and four episodes per day)
- Urgent and/or sudden need to poop
- Tenesmus (when you feel the need to poop but can't)
- Abdominal tenderness or pain
If the disease isn't controlled early and progresses to a moderate to severe stage, other symptoms might appear, including:
- Four or more episodes of diarrhea a day
- Blood, mucus, or pus in stool
- Severe abdominal pain
- Fatigue or extreme tiredness
- Sudden weight loss
- Nausea
As soon as you notice these symptoms, you should talk to your doctor. And once you start treatment for ulcerative colitis, you should stick to it.
Not keeping intestinal inflammation under control could cause uncomfortable and painful symptoms, and it could also allow ulcerative colitis to continue progressing and become a more serious problem with severe complications. These could include:
- Anemia
- Colon cancer
- Osteoporosis
- Liver problems (if inflammation spreads)
- Growth and development problems in children
- Dehydration
- Perforated colon (a hole in the colon that might require surgery)
- Severe bleeding (which might require a blood transfusion)
- Toxic megacolon (when toxins from the colon leak into the bloodstream)
- Blood clots (which could be life-threatening)
- Fulminant ulcerative colitis
The good news is that there are treatments that can control inflammation, prevent these complications, and ease symptoms.
Control Chronic Inflammation
Ulcerative colitis is a chronic condition, which means it usually requires lifelong treatment. It's normal to go through stages with symptoms and other times when you feel well for months or even years (called remission). Feeling symptom-free is a good sign, but it doesn't always mean the disease has gone away. That's why it's important to continue treatment and to talk to your doctor before making any changes.
Also, remember that even if you follow your treatment perfectly, symptoms might return or new symptoms might appear. This can be a sign that it's time to adjust or change your treatment.
Here we explain when you might need to review your treatment with your doctor.
Your Symptoms Seem to Be Getting Worse
Having symptoms again after months or years without them can be frustrating. But you should never ignore them if they return. Doing so could delay achieving remission once again and prevent you from enjoying a life without discomfort and pain.
One of the most useful tools for someone with a chronic illness is also one of the simplest: a journal or log.
For people with ulcerative colitis, doctors recommend keeping a log of the following information:
- Date
- Weight
- Description of your symptoms and their intensity (you can use a pain rating scale); if you have no symptoms, make a note of that
- If you had loose stools or diarrhea (and how many times)
- If you had rectal bleeding
- Description of your appetite
- If you suspect something specific triggered your symptoms (for example, you ate something spicy, felt stressed, or took a new medication or supplement)
- How you feel emotionally
- If you faced any challenges or complications or noticed any improvement
- Any questions or concerns you want to share with your doctor
Ideally, keep a daily log that includes this information for each day and write down these details both when you have symptoms and when you don't.
Having this log and sharing it with your health care team will help them figure out if symptoms have returned or worsened, or if you're experiencing a symptom for the first time. Any of these situations could mean that your intestine is inflamed again or that the inflammation has worsened despite following your treatment.
As soon as you notice a change in your symptoms, discuss it with your doctor.
You Have More Frequent Flare-Ups
The reappearance of disease symptoms (a flare-up) might mean that your treatment needs to be changed.
This is another case where keeping a daily log of your symptoms could be a very useful tool. Being able to review your log to see how often symptoms occur, how long a flare-up lasts, and what possible triggers you identified will help your doctor understand what is happening.
The reappearance of symptoms that had gone away could mean that you are no longer in remission, but this isn't always the case.
Sometimes another issue, like an infection or a new medication or supplement, might be causing what you are feeling.
Your Current Treatment Doesn't Work as Well as Before
If your doctor finds that the return of your symptoms or the appearance of new symptoms isn't due to an infection or another issue, they may determine that the medication or dose you take no longer works as it used to.
A simple adjustment to your medication dose might be enough to once again have control of your symptoms. But according to some studies, sometimes people can develop resistance to certain medications for ulcerative colitis, which lowers their effect on the body. When this happens, your doctor will stop the medications that no longer work for you.
Fortunately, there are many treatment options for ulcerative colitis. Your care team will help you find the best one for you when you first get your diagnosis and as your response to treatment changes.
It's Hard to Cope With the Side Effects
Although the different medications used for ulcerative colitis are usually good at controlling symptoms and the progression of the condition, they can sometimes cause side effects.
Not all patients react the same way to the same medication, and not all medications cause the same side effects. Some of the most common include:
- Nausea
- Headache
- Abdominal pain
- Rash
If any side effect is affecting your quality of life, it's important to tell your doctor. They can adjust your dose or look for alternatives, including other medications, that might be better for you.
Remember, you should never stop taking a prescription medication without talking to your doctor first.
You're Not Reaching Your Treatment Goals
It's important to set goals when a condition is first diagnosed and review them regularly to know if they need to change or if they are still relevant. It's also essential that you and your care team work towards the same goals.
If you're not reaching your goals, your doctor might want to review your treatment to figure out if it's truly the best option to help you achieve them.
Your Blood and Lab Tests Show Changes
If your symptoms are changing or you have new symptoms, your doctor will likely order some tests to help identify the cause of these changes.
But your doctor may also notice changes in your routine lab results, which are a tool for managing your ulcerative colitis.
Showing up to all your medical appointments is essential for your health. This is because sometimes changes can occur in your body even when you don't have symptoms.
The American Gastroenterological Association (AGA) recommends using blood and stool tests as the first tool to monitor ulcerative colitis.
These can measure levels of different biomarkers in your body, which can help your doctor figure out if your ulcerative colitis is active or in remission. The AGA recommends doing these tests every 6 to 12 months as part of monitoring the condition.
If your doctor needs more information, they might also do more advanced tests, such as:
- Colonoscopy
- Upper endoscopy
- CT scan
- MRI
- X-rays
Your Symptoms or Side Effects Are Affecting Your Mental Health
Your ulcerative colitis can affect your mood. But your mood can also affect your ulcerative colitis. Many studies have shown the close relationship between the gut and the brain. This is why it's essential to take care of your mental health as part of your treatment for ulcerative colitis.
If you feel bad, stressed, worried, or depressed due to your symptoms or medication side effects, talk to your care team to find solutions and tools that can help you.
Improving Your Well-Being One Day at a Time
Although there is no cure, millions of people around the world with ulcerative colitis lead healthy lives thanks to their treatment. According to the National Institute of Diabetes and Digestive and Kidney Diseases, in the U.S. alone, between 600,000 and 900,000 people have ulcerative colitis.
By learning more about the condition, you are taking a step toward a healthier life and a better quality of life.
Show Sources
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SOURCES:
American Gastroenterological Association (AGA): “New AGA guidelines back biomarkers for ulcerative colitis.”
Crohn’s and Colitis Foundation: “Overview of Ulcerative Colitis,” “IBD Symptom Tracker,” “Managing Flares and IBD Symptoms,” “Signs and Symptoms of Ulcerative Colitis,” “Understanding IBD Medications and Side Effects.”
National Institute of Diabetes and Digestive and Kidney Diseases: “Definition & Facts of Ulcerative Colitis.”
National Institutes of Health: “Severe ulcerative colitis: At what point should we define resistance to steroids?”
Mayo Clinic: “Ulcerative colitis.”
