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Patient InsiderHi,I’m MarisaManaging UC isn’t easy.But I’ve found my way.

Portrait of Marisa.

I was only 13

That’s when I got my diagnosis. It started with stomach pain, nonstop diarrhea, and no appetite. All of a sudden, my life was turned upside down. I’d never even heard of ulcerative colitis.

I didn’t allow anybody to visit me in the hospital or come to my home when I was flaring or not doing well. So I was feeling very alone.

After about a year, I joined a community forum for people who had ulcerative colitis. I would spend hours each day trying to understand people's experiences and the science, too.

I've had to shift my mindset.

My journey to control

My treatment was changing rapidly, especially in the beginning. I was told if I had my colon removed, I’d get a J-pouch that would work like a colon – and once I healed, I’d just go on living like UC never happened. I was actually told I’d be cured! I was excited, honestly. I thought I’d leave my colon – and all of this – behind.

But a few days after surgery, things went really wrong. I had major complications, and it was clear I wasn’t cured. I’ve had a lot of tough experiences with medical professionals over the years, and that’s definitely shaped how I advocate for myself now as an adult.

What’s helped me manage the unpredictability? Focusing on the parts of my life I can control. A lot of it is food. I try to journal. I meditate. I’ve learned how important routine is, even if I can’t stick to it every single day.

I've had to shift my mindset a lot. It’s important, at least for me, to know that my body's not trying to hurt me. It's not trying to attack me. It's just trying to let me know what's going on – and I need to listen. It's easier said than done sometimes and it's obviously a slow process, but the mindset shift for me has definitely helped.

I feel better when I control the things I can.

Learning to take charge

I try to be less in the, "Oh my God, why did this happen to me?" frame of mind. And more, "Okay, it's happened or it's happening. What can I do about it?"

It's important for anyone with UC to know that this is hard and our brains are reacting to abnormal situations. It's not that we're broken or there's something wrong with us.

For my mental health, getting some kind of movement really changes the day for me. That's if I'm physically able, of course. And eating the types of foods that I know are good for my stomach or my body really make a huge difference for me. So, those are the two things, above all else, that are my go-tos.

Also, being prepared before a doctor’s visit can really ease a lot of anxiety. Remember: you're not a bother and you do have the right to stand up for yourself. Sometimes that doesn't necessarily mean in the doctor’s room. It can also mean afterwards.

Ultimately, know you’re not alone and whatever feelings you’re going through are completely valid and normal.

Portrait of Marisa.

My Reading List

I get it – managing UC is tough. Fortunately it’s doable.

Follow more of my story.