I've lived with ulcerative colitis for 13 years — here are 6 things you should know about this GI condition

• Along with frequent bowel movements, UC can cause joint pain and fatigue and lead to anemia.
• Living with GI symptoms can also contribute to feelings of stress, depression, and anxiety.

Ulcerative colitis (UC) is no fun — and that's putting it mildly.

If you've never heard of it, UC is a form of inflammatory bowel disease (IBD) — a group of illnesses that can cause chronic inflammation in your digestive tract.

UC affects your large intestine — as opposed to Crohn's disease, another form of IBD that can develop in any part of your GI tract.

While UC has no known cause, it can cause uncomfortable and sometimes debilitating gastrointestinal (GI) symptoms, like bloody diarrhea, frequent bowel movements, and abdominal cramps.

Like I said, no fun at all. And I can attest to that.

I got my UC diagnosis at 13 — which is pretty young, considering most people get their diagnosis between the ages of 15 and 30. Growing up, I learned how to live with, manage, and eventually laugh about my chronic illness. I also encountered a lot of misconceptions — and a few things I wish more people knew.

Below, you'll find six important things about UC from someone who's lived with it for half her life.

1. It's more than just a dash for the restroom

When I tell people I have UC, some respond with a variant of "Oh, that means you go to the bathroom a lot, right?" Well, yes. But it's more complicated.

I don't blame people for thinking this. It doesn't help that the media plays into the "I gotta go" stereotype — I'm looking at you, medication commercials showing people practically glued to toilets.

But while urgency is part of UC, this illness can bring more physical symptoms like:

• Abdominal pain: UC can cause intensely painful abdominal cramps. During flares, I've had cramps that nearly made me pass out.
• Fatigue: According to the IBD foundation, 85% of people with UC experience fatigue – which can seriously derail your daily function. Having bloody diarrhea multiple times a day is like living with the stomach flu on steroids. In other words, totally exhausting.
• Anemia: UC can lead to anemia — when you have fewer red blood cells than you should. I struggled with iron-deficiency anemia, which can cause fatigue, weakness, dizziness, shortness of breath, and pale skin. Not my ideal summer look.
• Joint pain: As many as 30% of people with Crohn's disease or UC experience some form of joint pain, which can leave you feeling stiff and uncomfortable. When my hip seized up for the first time, I instantly gained new appreciation for my grandma.

2. It can affect you mentally, too

Beyond the physical symptoms, UC might also impact your mental health.

Fighting a war with your own body can take a mental toll.

• Around 35% of people with UC or Crohn's disease experience symptoms of anxiety.
• People with IBD have higher rates of depressive disorders, by about 15%

Note: A UC flare on its own typically doesn't lead to a new mental health condition like depression or anxiety, says Dr. Max Pitman, gastroenterologist at Salvo Health. But UC might worsen your existing anxiety or mood-based issues through the gut-brain connection.

When I'm flaring up, it's like being stuck in a dark fog. I feel hopeless, anxious, and even guilty — often because I feel too exhausted to stick to work deadlines and have to cancel plans.

But, I had to learn how to give myself a break. I'm not lazy: I'm just tired. I have a chronic illness that impacts my gut. And my gut may affect my brain, in turn: One review found that people with IBD have higher rates of anxiety when the disease is active versus in remission, suggesting an upset gut may play a part in mental distress.

If you're having trouble managing your mental health, treatments like cognitive behavioral therapy (CBT) could help.

Pitman recommends a form of CBT called gut-directed cognitive behavioral therapy, which helps you learn coping methods for your thoughts and emotions when you have a GI illness. Some research even suggests that gut-based CBT might improve digestive tract symptoms.

3. There is no one-size-fits-all treatment, but remission is possible

Some believe a UC diagnosis is a lifetime sentence of GI turmoil. That's what I thought once, too —but present me knows better.

While UC doesn't have a cure, you can achieve long-term remission, which means you have more days without GI symptoms than with them.

UC remission types include:

• Clinical remission: Your GI symptoms are under control, or they stop altogether.
• Endoscopic remission: The membranes in your small intestine don't show signs of inflammation.

According to Pitman, the ultimate goal for most people with UC is for symptoms to improve or go away and for any colonoscopies or biopsies in your colon to look completely normal.

When I was 22, I achieved clinical remission for the first time as an adult, thanks to the help of my fantastic primary care doctor.

That said, UC affects everyone differently, so finding the right treatment can take trial and error. Some of the options you and your doctor might consider include:

• Medication: For around 70% of people with UC, medications like biologics, anti-inflammatories, and immunosuppressive drugs may help them achieve remission. But for me, meds either didn't help much or made my symptoms worse. So, my doctor and I decided to manage my UC through diet and supplements alone.
• Diet: There is no special diet for ulcerative colitis. But certain foods might exacerbate your symptoms. I've had the best results by identifying my trigger foods, like candy and raw carrots, and tailoring my diet to avoid or limit them. But again, everyone is different.
• Supplements: Beyond watching your diet, adding supplements to your routine might help. For instance, short-term studies suggest aloe vera may have anti-inflammatory benefits for people with digestive issues — and it's a favorite of mine during flare-ups because I find it helps soothe my gut.

4. I can manage flare-ups with some planning

During remission, I can enjoy foods I might otherwise avoid in moderation: Hello, pumpkin lattes and homemade cookies, how I missed you. But I still have to proceed carefully. My most recent flare-up happened right after Thanksgiving in 2021 — a holiday when I'd typically eat buckets of rich food.

After three years without any major GI symptoms, I flew too close to the sun — and my gut brought me back to earth. But I brought my symptoms under control by February 2022 by watching my diet closely.

During UC flare-ups, I limit or avoid:

• Refined sugar: Some research links a high-sugar diet to inflammation. Eating foods linked to inflammation might not be ideal when inflammation already dominates your gut. When I'm flaring up, I pass on foods high in refined sugar, like milk chocolate, and satisfy my sweet tooth with fruit or stevia-sweetened tea instead.
• Refined carbs: Foods high in refined carbohydrates, like white bread and pasta, also trigger my symptoms. However, many people with UC don't have issues with refined carbs. So this may just be a "me" thing. But if I'm craving bread, I find that whole-grain loaves treat my gut the best.
• Fatty or fried foods: Foods with high fat or grease content, like French fries or fried chicken, can trigger me. So, I'll opt for grilled chicken and oven-baked potatoes instead.
• Certain raw vegetables: Raw carrots almost always irritate my gut — and any type of raw vegetables may be more difficult to digest when you have an inflamed gut, Pitman says. So, roasting my carrots helps me enjoy them without issue.

But food triggers can be super complicated, Pitman says, which means you may have completely different triggers if you have UC or Crohn's disease.

Note: If you're unsure what upsets your gut, an elimination diet like the low FODMAP diet may help. Just keep in mind it's best to work with a doctor or dietitian when trying an elimination diet, especially for GI issues.

5. It can make social events with food stressful

Food often dominates family, friend, or coworker gatherings, which can be tricky when you have an invisible illness like UC.

Not everyone understands the challenges of chronic GI issues. People might look at you funny if you're the only one not happily chowing down at the potluck, or you bring a lunchbox to a catered dinner.

But even when I explain, not everyone understands or accepts my reasons — perhaps because they don't understand how much food can influence UC.

A few bites of the wrong food could leave me doubled over with cramps or make me pull over and dash for a bathroom while driving home. If I say "No, thanks" to a plate, I'm not trying to be rude. I'm just trying to stay on my gut's good side.

6. Having a support system helps

Having a support system means the world with a chronic illness. For me, that's my amazing mom and my sister-in-law.

Whenever I had flares growing up, my mom tirelessly searched for new recipes that wouldn't bother my gut. She even followed my restriction diets out of solidarity and fasted with me when I prepped for a colonoscopy. Her support made me feel less alone as a teen, and it still does today.

It also helps to find a friend or support group who understands what you're going through. My sister-in-law also has UC, and she can relate to everything I endured growing up. Talking with her always lightens my mood — and we often text each other UC memes.

Sharing humor may seem like a small thing, but it helps to know someone else relates to your struggles. Plus, you can laugh about it during your next bathroom trip.

Quick tip: If you want to find your own support system, check out online organizations like the Crohn's & Colitis Community.

Insider's takeaway

Ulcerative colitis doesn't just mean frequent bathroom trips. UC can also come with physical and emotional symptoms that can have a major impact on your everyday life.

It's possible to achieve remission through a combination of taking the right medication, managing your diet, and finding supplements — but this condition does require treatment and support from a GI specialist or other healthcare professional to manage your symptoms and help reduce your risk of complications like colon cancer. I still check in with my doctor regularly, even during remission.

Having a support system can also be a huge help as you navigate life with a chronic illness. I'm happy to be in remission today, and my family's love and support helped me feel less alone — and more hopeful — when I didn't know what was happening with my body.