Our Strangest Ulcerative Colitis Symptoms

One thing that’s certain about life with UC? It can be filled with uncertainties.

A sudden bout of excruciating cramps. An unexpected hour in the bathroom. Days of searing joint pain. Unrelenting fatigue. UC has a way of impacting so many facets of our lives. We may have to miss out on a niece’s ballet recital, family gatherings, or the best part of a movie. Sometimes it just makes us feel so very alone.

We asked those living with UC how their unusual – and sometimes surprising – symptoms affect their lives, and they had loads to share.

I have random bouts of terrible pain and then I’m completely fine the next day.– Inflammatory Bowel Disease Community Member
Thought bubbles, magnifying glass, question marks and more!

Living with unpredictability

Sometimes a walk in the park is anything but that. With UC, preparation is key for any activity. During a trip to the store or an afternoon hanging with friends, there’s always the possibility of our sneaky companion – the flare – showing up to darken our day.

No doubt about it – UC makes planning things, and following through, very hard. We don’t always receive advance notice of when a flare will strike, how bad it will be, or how long it will last. At times, it feels like the safest option is to just stay home. And that means that we may miss out on moments and memories with friends and family.

Thought bubbles, magnifying glass, question marks and more!

“When a flare kicks in, there’s no going anywhere.”

– Inflammatory Bowel Disease Community Member

Our private pain

Dealing with flares can be hard. But what about explaining them to your partner? Your friends? Your boss? That can be just as tough. UC can affect so much – from our sleep to our teeth to our joints and more. And we wish others understood this.

When it comes to managing UC, the struggle is real. Even when you think you’re doing everything right, it can feel as though something goes wrong. It’s important not to bottle-up these feelings. Vent to a sympathetic ear. Try some new ways to help prevent symptoms. Do something proactive, like pack an emergency flare kit, for when accidents happen.

“I might have a month or more of cramping and diarrhea.”

– Inflammatory Bowel Disease Community Member

Coping with loneliness

UC is an invisible illness. At a quick glance, no one can look at us and see that we have ulcerative colitis. Getting others to understand the complexities of UC can be a tall order. It’s not always easy for people to grasp how deeply the disease affects us. This can make us feel all the lonelier.

What can help? Open, honest conversations are one way to start breaking down barriers. Taking part in communities like InflammatoryBowelDisease.net can offer a shoulder to lean on. And talking with others living with UC can be a powerful way to feel supported and heard.

“Sometimes my family and friends blow me off. No one understands how badly I feel.”

– Inflammatory Bowel Disease Community Member

A path forward

Living with UC can bring changes and challenges that we don’t always expect. It can be difficult to feel in control when surrounded by so much uncertainty. But there are things we can do to help. Being proactive, seeking support, and having open conversations can make a big difference.