How is Ulcerative Colitis Diagnosed? Let's Talk About It.
- Jacki McEwen-Powell
- Apr 14
- 9 min read
Right, so you’re probably here because you’ve been down the Google rabbit hole, right? Typing in "How is ulcerative colitis diagnosed?" and maybe even, "Is this what's going on with me?" You're definitely not the only one. It’s one of those things everyone searches for, but getting a straight answer? That’s the tough bit.
Honestly, figuring out if you have UC isn't just about a bunch of tests and fancy medical terms. It’s about feeling heard. It's about someone actually listening to what your body is telling you. It’s about not feeling like you’re just a number or getting lost in the system. So, let's just chat about it, like we're catching up. We'll go from those first little signs all the way to getting a diagnosis, and we'll even talk about what happens next.
It Usually Starts with a Gut Feeling (Pun Totally Intended)
Okay, so what might make you think about UC in the first place? Maybe you’ve seen blood in the toilet. Maybe you’re suddenly running to the bathroom like it’s a race. Or maybe you’re just so tired, like, bone-tired, and no amount of sleep helps. And then there's the whole stomach thing – cramping, bloating, just feeling like your gut is throwing a party.
These little things? They’re easy to brush off. You might say it’s just stress, or maybe that dodgy curry you had last night. "Oh, it’s probably just IBS," right? We’ve all been there. But here's the deal: when these things keep happening, when they become your new normal, that’s when you need to pay attention. Especially if you're seeing blood or losing weight without trying.
Sometimes the symptoms come and go. Other times, they creep in slowly and quietly get worse. For some, it only clicks when the weight drops fast or the exhaustion becomes overwhelming. And then there are those who’ve lived with a low hum of discomfort for years before finally deciding to get it checked out.
What Happens Next? Ruling Stuff Out
Before anyone says, “Yep, it’s UC,” they’ve got to rule out other things first. Infections are usually the starting point. So expect stool tests to check for things like parasites, C. diff, salmonella or E. coli. If any of those show up, they’ll need to deal with that before looking further.
Sometimes, antibiotics or food poisoning can trigger something called post-infectious colitis. It’s basically your gut throwing a tantrum after an insult, and it can look and feel just like UC, which makes diagnosis even messier.
Then come the blood tests. These don’t confirm UC, but they can throw up some red flags:
CRP and ESR might be raised, showing inflammation – but they don’t say where or why
Low iron or red blood cells might mean slow blood loss
Low vitamin levels could suggest poor absorption – another sign your gut isn’t happy
These are puzzle pieces, not a full picture. They say, “Something’s going on,” but they don’t say what.
Stool and Blood Tests: What Do They Really Mean?
Stool and blood tests aren’t useless, but they're not the whole story. A stool test can show inflammation (through something called calprotectin), blood, or infection, but it doesn’t say where the inflammation is or what’s causing it. Blood tests can show anemia or general inflammation, but they don’t explain why. Think of them as hints, not answers.
Sometimes, your tests might even come back “normal” when you feel like absolute garbage. That’s why your story and your symptoms are just as important as the numbers on a lab report.
The Real Deal: Colonoscopy with Biopsy
The best way to know for sure if it’s UC? A colonoscopy. It’s when a doctor uses a camera to look inside your colon, check for inflammation, and take tiny tissue samples (biopsies) for testing.
During the colonoscopy, they’ll look for:
Inflammation that starts at the bottom (the rectum) and spreads upwards: This is a classic sign of UC.
Ulcers or bleeding: This shows that the lining of the colon is being damaged.
Damage to the innermost layer of the colon: This is what UC primarily affects.
But here’s where it gets a bit more complicated. UC and Crohn’s disease can look similar at first glance, but they differ in how the inflammation behaves. UC typically starts in the rectum and spreads upward in a continuous pattern. Crohn’s, on the other hand, can appear anywhere along the digestive tract, from mouth to anus, and often skips areas in between (this is called “skip lesions”).
The biopsies taken during a colonoscopy help make that distinction. Under the microscope, the way UC and Crohn’s affect the tissue is different. UC usually impacts only the innermost layer of the colon, while Crohn’s can penetrate deeper into the bowel wall. Additionally, Crohn’s may show something called granulomas – small clumps of immune cells that aren’t typically found in UC.
So, the biopsy not only helps confirm whether it's UC, but it can also give more insight into what’s happening at a deeper level in your gut, helping your doctor rule out other conditions like Crohn’s.(here's a blog about the differences between UC and Crohn's).
Getting Ready for a Colonoscopy: It's Not That Bad
The prep for a colonoscopy is the worst part. You’ll want to eat light for a day or two and then take a strong laxative to clean everything out, while fasting or restricting intake to clear liquids.
Here are some tips:
Stay near a toilet: You’ll be needing it. A lot.
Have wipes and comfy stuff ready: It makes it less awful.
Drink the prep cold, with a straw: It helps it go down easier.
Plan to chill out before and after: You’ll probably be tired.
And talk to your doctor! If you're bleeding a lot or can't keep liquids down, let them know. They might need to change the prep.
When It's Not So Clear: Indeterminate Colitis
Sometimes, even after all that, the diagnosis isn't clear. You might hear "indeterminate colitis," which basically means they can’t tell if it’s UC or Crohn’s.
Here's the quick difference:
UC: Just the colon, starts at the bottom, goes up.
Crohn’s: Anywhere in your digestive system, patchy.
Microscopic colitis: Only seen in biopsies, colon looks normal.
IBS: No inflammation, but similar symptoms.
Sometimes, they call it IBDU (Inflammatory Bowel Disease Unclassified). It just means they need more info.
Other Tests You Might Run Into
Depending on what’s going on, you might have:
Calprotectin stool test: Checks for gut inflammation.
Fecal occult blood test: Checks for hidden blood.
CT or MRI: Looks for problems in hard-to-see places.
Sigmoidoscopy: Looks at the lower part of the colon.
Capsule endoscopy: A tiny camera you swallow.
Stress and Diet: They Matter!
Stress and diet can mess with test results. Super clean eating or fasting can make inflammation look lower. Stress can make symptoms worse, even if scans look okay. Tell your doctor about your diet, weight loss, and any changes in your symptoms.
Diagnosis in Children: Unique Considerations
Children with UC might present with different symptoms, often including growth delay, poor appetite, or anemia before digestive symptoms manifest. Pediatric colonoscopies are typically performed under full sedation, and care often involves a multidisciplinary team. Early diagnosis is crucial for healthy development and long-term gut health in children.
The Emotional Rollercoaster: It's Real.
Okay, so let's be real for a second. Getting diagnosed with UC? It's not just about the tests and the doctor's appointments. It's a whole emotional thing, too. You might feel relieved to finally have an answer, but then you might feel scared or angry or just plain overwhelmed. And that's totally normal.
Being told "it's just stress" or "it's just IBS" when you know something's seriously wrong? That's rough. It makes you question yourself. "Am I making this up? Is it all in my head?" You're not. You're definitely not. And it's okay to feel all the feelings.
That weird mix of relief and fear after you get the diagnosis? That's normal too. You're probably thinking about medications, and what this means for your life, and maybe you're just a bit sad about what your body is going through. Take your time. Talk to people. It's okay to not be okay.
Building Your Tribe: You Need People.
Going through this alone? Not fun. You need your people. This could be:
Family and friends: Tell them what's up. They might not get it completely, but they can still be there for you.
Support groups: Online or in person, these are gold. Talking to others who get it? It's a game-changer.
Therapists or counselors: Someone to help you sort out all the emotions. Seriously, it helps.
Dietitians, nutritionists or health coaches: Especially ones who know gut stuff. They can help you figure out what to eat (and what not to eat) and how to supplement.
Integrative Nutrition Health Coaches: They (or should I say, we) take a holistic approach to your health, looking at everything from your diet to your stress levels. They can guide you in making lifestyle changes that support your gut health, help reduce inflammation, and make sure you’re not missing any key pieces in your healing journey.
Don't try to be a hero. Reach out. Connect. Let people help you.
Speaking Up: You’ve Got To Be Your Own Advocate.
If you feel like you're not being heard, here's what you can do:
Ask for a calprotectin test: It's a simple stool test that shows inflammation. It's proof.
Keep a symptom journal: Write everything down. Take pictures if you need to. Show them to your doctor.
Push for a GI referral: A gastroenterologist is a gut specialist. They know their stuff.
Ask for a colonoscopy: If you haven't had one, ask for one. It's the best way to know.
Get copies of your records: Biopsy results, everything. And get a second opinion if you need to.
You're not being difficult. You're making sure you get the care you deserve.
Private vs. Public: The Waiting Game.
If you're relying on public healthcare, you might be stuck on a waiting list. If you can swing it, private testing or a private GI referral can speed things up. It's not fair, but it is what it is.
Even with private care, it can still take time. But at least you're not waiting months and months.
So, You've Got the Diagnosis. Now What?
You might get meds. Steroids, immunosuppressants, the whole shebang. But that's not the end of the story. Healing is about more than just pills. It's about:
Diet: Figuring out what foods work for you (and what don't).
Gut bacteria: Probiotics, prebiotics, all that good stuff.
Stress: Finding ways to chill out. Yoga, meditation, whatever works.
Sleep: Getting enough of it.
Moving your body: Gentle exercise.
Gut lining: Helping it heal.
Check out my books and blogs for more on all of this. I've got loads of tips.
Keeping It Under Control: Long-Term
UC is a long-term thing, but you can manage it. Remission (where you're feeling good) is possible. It's about:
Regular check-ups: Keeping your doctor in the loop.
Healthy habits: Diet, stress, sleep, supplementation, exercise and more.
Flare plans: Knowing what to do when things get rough.
Support: Still talking to your people.
Food, Glorious Food: What to Eat (and Not Eat).
Food is a big deal with UC. There's no one "UC diet," but here are some ideas:
Find your triggers: Keep a food diary. What makes you feel bad?
Eat good stuff: Whole foods, lots of nutrients, natural pre and probiotics, fibre when you can tolerate it, food variety (30 plant points a week is the goal). Here is a blog on the truth about fibre with UC.
Drink water: Stay hydrated.
Low-residue diet during flares: Less fibre, easier on your gut.
Talk to a dietitian or nutritionist: They can help you make a plan.
Quick Answers: FAQs
Stool test for UC? Not by itself. You need a colonoscopy.
How long for diagnosis? Days to years. It varies.
Misdiagnosed? Happens a lot. Especially as IBS.
Tests are normal but I'm sick? Ask for more tests or a second opinion.
Stress cause UC? No, but it can make it worse.
Best first test? Calprotectin and inflammatory markers.
Normal colonoscopy with UC? Possible, but biopsies are key.
UC permanent? Medically, yes. But long-term remission (even drug-free) is possible.
Kids diagnosed differently? Similar, but the symptoms might be different.
Alternative therapies? Loads. But always loop your doctor in.
Surgery: The Last Resort.
Sometimes, if meds don't work, you might need surgery. Removing your colon (colectomy) is a big deal, but it can help. There are different types of surgery, so talk to your doctor about all the options.
When You Don't Get an Answer: It's Okay to Keep Looking.
Sometimes, even after everything, you still don't have a clear diagnosis. It's frustrating. You might hear "undiagnosed IBD" or "functional gut disorder." Don't give up.
Keep records: Symptoms, triggers, everything.
Regular check-ins: With your doctor.
Functional medicine: Definitely worth exploring.
Manage symptoms: Even without a diagnosis.
Keep asking questions: You deserve answers.
Keeping Tabs: Regular Monitoring.
Once you're diagnosed, you'll need regular check-ups, blood tests, stool tests, and maybe even more colonoscopies. It's all about keeping an eye on things and making sure everything's under control.
The Future: New Stuff on the Horizon.
Scientists are working on new ways to diagnose and treat UC. Biomarkers, genetic testing, microbiome things, new meds. It's all happening.
You're Not Alone: Seriously.
This whole UC thing? It's a journey. It can be tough. But you're not alone.
Connect with people: Support groups, online forums.
Learn about UC: Knowledge is power.
Speak up: Ask questions. Get what you need.
Be kind to yourself: Healing takes time.
Focus on what you can control: Diet, stress, all that good stuff.
You've got this.
Disclaimer: I'm not a doctor. This is just info. Talk to your doctor about everything.
Resources:
Local Support Groups: Search online or ask your doctor.
You're stronger than you think. You're more resilient than you know. And you're not alone on this wild ride.
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