How I learned to live with my condition

Orla Pentelow, 31, from North London, was diagnosed with ulcerative colitis, a form of inflammatory bowel disease (IBD), in 2017 after years of stomach problems. Despite the painful and sometimes debilitating symptoms, she has found her own ways to manage the autoimmune condition—and the anxiety that comes with it.

Orla Pentelow has been living with IBD since 2017 (Supplied)

Even before my inflammatory bowel disease diagnosis in 2017, my anxiety was at an all-time high. My symptoms—a glorious combination of debilitating stomach pain and a constant need to go to the bathroom—were plentiful, and I was at a pivotal point in my career.

I had just finished an internship at a fashion magazine (in fact glamorous) and I was ready to take the next steps, but personally I was struggling. Bad.

Inflammatory bowel disease (IBD) is a term for two conditions (Crohn’s disease and ulcerative colitis), which are characterized by chronic inflammation of the gastrointestinal (GI) tract.

Anxiety and IBD

This year, World IBD Day (May 19) fittingly falls on the Friday of Mental Health Awareness Week, and even more fitting is the theme for 2023: anxiety.

The two live side by side, coexisting in my body like troubled siblings who get along one minute and pull each other’s hair out the next.

Living with UC means becoming an expert at finding the nearest toilet wherever you go. Even when the condition is well managed—what we call remission—a flare-up can occur at any time, so it’s a constant anxious battle not to be too far from the porcelain throne we like to call home.

But it’s not just physical symptoms that can cause concern for IBD patients. Anxiety, in turn, can also manifest itself in physical symptoms. It’s a vicious cycle.

I am coming to terms with my diagnosis

At first, even talking about the possibility of a diagnosis was stressful. I felt anxious and even my best friends and family didn’t realize the extent of my symptoms.

For some reason, talking about “looking for number two” is taboo. There are hundreds of funny synonyms for it, but talking about it openly is another thing.

It feels uncomfortable. But as they say, when life throws you lemons, make a joke, right?

So I decided to embrace the absurdity of my situation and try to find humor in the most awkward moments.

I found that sharing my experiences with friends and family not only eased the burden on my shoulders, but also helped them cope with what I was going through.

They turned out to be more supportive and understanding than I could have imagined. Plus, nothing beats the feeling of laughing together at a situation that would otherwise give you goosebumps.

Making it a “normal” part of the conversation also means that when I’m fighting a fit, it’s easier to bring it up and talk. It’s not out of the blue.

Managing my anxiety

In addition to discovering the funny side (everyone loves a poo joke at the end of the day), I realized that setting boundaries was critical to managing my anxiety symptoms.

When you have a chronic illness, it’s easy to get caught up in the whirlwind of stress and constant worry about what’s going on. But here’s the thing: worrying doesn’t solve anything.

Instead, I had to learn to focus on what I could control and set clear boundaries to protect my mental well-being, which in turn helped ease my more severe IBD symptoms.

For example, I started saying “no” more often. I used to feel guilty about turning down invitations or canceling plans at the last minute due to the unpredictable nature of my condition. But I quickly realized that my health should always come first and those who want to be in my life will understand.

Sure, I lost a few friends along the way who didn’t quite get it, but hindsight is a wonderful thing.

After some time to reflect (and cry into a few glasses of wine), I came out the other side stronger and on better terms with those who stuck around through the crappy times (excuse the pun).

Setting limits means understanding my limits and not pushing myself beyond what not only my body can handle, but what I can mentally handle, manage without burning out.

For me, that means prioritizing self-care and allowing myself to rest when needed without feeling guilty about it.

As anyone who knows me personally can attest, “relaxing” and “not overthinking” aren’t exactly my strengths, but I’ve learned that it works for me, and maintaining that consistency means I have just as much a full life like anyone else.

IBD and methods of coping with anxiety

Others with IBD will have their own methods: from sound baths to taking Wim Hof-style cold showers, I’ve heard it all.

Meditation and breathing can also be of great help. If it’s a specific event or place you’re worried about visiting, visualizing it ahead of time can help ease symptom-based anxiety.

If I’ve learned anything since my diagnosis, it’s that people with IBD can’t handle any more crap (literally), and so if they’ve found anything that helps keep their anxiety at bay, it’s worth a try in my book.