5 Years of Ulcerative Colitis: What I'd Tell Myself on Day One

Five years ago, I sat in a gastroenterologist's office and heard words that would change my life: "You have ulcerative colitis."

I remember feeling confused, scared, and completely overwhelmed. I had so many questions. Would I need surgery? Could I still eat the foods I loved? Was my life going to be defined by bathroom emergencies from now on?

Looking back from where I am now, I wish I could sit down with that newly-diagnosed version of myself and share everything I've learned. Not to take away the hard parts—some lessons you have to learn yourself—but to give some hope and practical wisdom for the road ahead.

If you're newly diagnosed, or even if you've been at this for a while, this is what I'd tell you.

1. This Isn't Your Fault

You're going to spend the first few months wondering what you did wrong. Was it stress? Diet? That time you didn't wash your hands well enough? Something you did as a kid?

Stop. It's not your fault.

Ulcerative colitis is an autoimmune disease. Your immune system is attacking your own colon, and nobody knows exactly why. It's not because you ate too much junk food or didn't exercise enough or were too anxious. It just... happened.

You can drive yourself crazy playing the blame game, or you can accept that some things just are, and focus your energy on managing what's in front of you.

2. Find a GI You Trust, Then Actually Trust Them

Your relationship with your gastroenterologist is going to be one of the most important relationships in your life. Find someone who listens, explains things clearly, and takes your concerns seriously.

But here's the part I struggled with: once you find that person, you have to actually trust their expertise. That means taking the medications they prescribe, even if you're scared of side effects. It means calling when they tell you to call. It means following up when they ask you to.

I wasted so much time second-guessing my GI, avoiding medications I was afraid of, and trying to outsmart my disease through willpower alone. It didn't work. Learn from my mistakes.

3. Don't Be Afraid of the Medications

Speaking of medications: you're going to hear scary things about IBD drugs. Steroids cause moon face. Biologics suppress your immune system. Mesalamine can affect your kidneys.

Here's what you won't hear as often: these medications work. They reduce inflammation, heal your colon, and let you live your life. The alternative—uncontrolled inflammation—is almost always worse than the medication side effects.

I once avoided prednisone for so long that I ended up in the hospital on IV steroids. My fear of the medication led to needing more of it. Don't make the same mistake.

4. Track Your Symptoms (Seriously)

I know tracking feels like one more burden on top of everything else. But trust me: when you can look back at weeks or months of data, patterns emerge that you'd never notice otherwise.

You'll see that your symptoms tend to spike on Mondays (stress from work). Or that a certain food consistently causes problems two days later. Or that your flare actually started escalating two weeks before you realized it was serious.

This data is gold when you're talking to your GI. Instead of "I've been feeling kind of bad lately," you can say "I've had blood 8 of the last 14 days and my pain has gone from a 2 to a 6." That specificity helps them help you.

5. Blood Is a Signal, Not a Catastrophe

The first time you see blood, you're going to panic. That's normal. But over time, you'll learn that blood is just... information.

Blood tells you that inflammation is active. It's a signal to pay attention, to track what's happening, to potentially contact your doctor. But it's not an emergency every single time. You'll learn to read your own body and know the difference between "this is within my baseline" and "something is really wrong."

The key is to always report it. Let your GI decide if it's significant. Your job is to notice and communicate, not to diagnose.

6. You Can Still Eat Good Food

The internet is full of strict IBD diets that eliminate everything delicious. And yes, during a flare, you might need to stick to bland, easy-to-digest foods.

But in remission? You can eat most things. You'll figure out your personal trigger foods (mine are raw onions and anything too spicy), but you don't have to live on chicken and rice forever.

I was terrified I'd never enjoy food again. I'm writing this having eaten a full Indian vegetarian meal for dinner last night. It's possible. You just have to learn your body.

7. Flares End

When you're in the middle of a bad flare, it feels like it will never end. You can't imagine feeling normal again. You start to think this is just your life now.

It's not. Flares end. Sometimes they end quickly with the right treatment. Sometimes they take longer. But they do end.

Five years in, I've been through several flares. Every single one eventually resolved. The despair you feel during a flare is temporary, even when it doesn't feel that way.

8. It's Okay to Not Be Okay

Chronic illness is hard. Not just physically, but mentally and emotionally. There will be days when you're exhausted, frustrated, angry, sad. Days when you wonder why this happened to you. Days when you just want to be normal.

That's okay. You don't have to be positive all the time. You don't have to be an "inspiration." You're allowed to have bad days. You're allowed to grieve the life you thought you'd have.

Just don't stay there. Feel the feelings, then get back to living.

9. Tell People (Selectively)

You're going to want to hide your diagnosis. It's embarrassing. It's private. It's easier to just say "I have a stomach thing."

But telling the right people—close friends, family, maybe your manager at work—makes life so much easier. They can support you. They can understand when you need to cancel plans. They can stop asking why you always know where the bathroom is.

You don't have to tell everyone. But complete secrecy is exhausting and isolating. Find your people.

10. You're Going to Be Okay

This is the most important one. I know you don't believe it right now. I know everything feels scary and uncertain. But you're going to be okay.

You'll learn to manage this disease. You'll have good periods and bad periods. You'll find medications that work. You'll develop a relationship with your GI. You'll figure out what you can eat and what to avoid. You'll build a life that accommodates UC without being defined by it.

Five years from now, you'll look back and be proud of how far you've come. You'll have wisdom that only comes from living through hard things. And you'll want to help others who are where you once were.

That's why I built an app. That's why I'm writing this. Because I was you, and I made it through, and I want you to know that you will too.

What I'd Do Differently

If I could go back and change things, here's what I'd do:

• Start tracking from day one. I lost years of data that could have helped me understand my patterns.
• Trust my GI sooner. I wasted time being skeptical when I should have been following their advice.
• Take medication when prescribed. Avoiding steroids didn't help me; it just made things worse.
• Report symptoms immediately. No more waiting to see if things get better on their own.
• Be easier on myself. I spent too much energy feeling guilty and scared when I could have been focused on getting well.

You don't have to make the same mistakes I did. Learn from mine and make your own, new ones.

To Anyone Newly Diagnosed

If you're reading this and you've just been diagnosed: I see you. I know how overwhelming this is. I know you have a thousand questions and no one seems to have clear answers.

Take it one day at a time. Find a good GI. Take your medications. Track your symptoms. Be kind to yourself.

And know that five years from now, you'll be the one writing letters to the newly diagnosed, sharing what you've learned, and telling them what I'm telling you:

You're going to be okay.