Don’t Just Wait Around: How to Live Well While Waiting for an IBD Diagnosis

Crohn’s disease and ulcerative colitis are notoriously difficult to diagnose. Even if your doctor hasn’t yet confirmed you have one of these conditions, you can still make some lifestyle changes that won’t hurt — and might help.

Learning how to live, let alone thrive, while seeking a diagnosis for inflammatory bowel disease (IBD) can be an overwhelming prospect, but it doesn’t have to be.

Yes, people with ulcerative colitis and Crohn’s disease often face long delays in learning the root cause of their symptoms. This doesn’t mean you have to sit and wait for a diagnosis to be pinned to your medical chart before living life to the fullest, though.

You have the power to take charge of life and to learn to thrive on your terms until a diagnosis is unearthed.

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What is IBD, and how does it affect the body?

If you’re still waiting for a diagnosis, all the terminology and alphabet soup may be new to you. IBD stands for inflammatory bowel disease and encompasses two conditions: Crohn’s disease and ulcerative colitis. Both are caused by inflammation in the digestive tract.

Crohn’s disease can affect anywhere in the digestive tract from the mouth to the anus, most often involving the small intestine and colon,” explains Dr. Elliot Coburn, a gastroenterologist based in Hackensack, New Jersey.

“Ulcerative colitis only affects the colon and can range from involving just the rectum to involving the entire colon,” he adds.

Treatment for IBD usually requires a cross-section of approaches, which may include medications, dietary and other lifestyle changes and, in severe cases, surgery.

It’s important to note that IBD is not the same as IBS, which stands for irritable bowel syndrome.

Why is IBD so hard to diagnose?

Even though IBD is common — an estimated 3.1 million adults in the United States live with it — many people still wait years to be diagnosed.

In fact, 1 in 10 people with IBD visited their doctor with symptoms 5 years before diagnosis.

One of the complicating factors is the lack of a singular test to diagnose IBD.

“The disease is usually diagnosed based on a constellation of a patient’s history and symptoms, blood work, imaging studies, and endoscopic and histologic findings,” Coburn says.

It doesn’t help that there’s a wide range of symptoms, and these vary significantly among individuals.

“It’s important to recognize that the symptoms of IBD are nonspecific and can be easily confused with the symptoms of other diagnoses, like celiac disease or irritable bowel syndrome,” adds Coburn.

As a result, people may be incorrectly diagnosed before their physician concludes that IBD is the real culprit.

However, Coburn notes, “Symptoms such as long-standing abdominal cramping, chronic diarrhea, blood in the stool, or weight loss, should raise suspicion for IBD and prompt an early referral to a gastroenterologist.”

Improving the diagnostic process

There’s no simple, immediate fix to make diagnosing IBD easier — especially because of the way the current healthcare system in the U.S. operates, according to Coburn.

“Many people lack access to healthcare,” he says, whether that’s due to a lack of health insurance, long waits for appointments, or other issues. These factors, he says, “will also lead to serious delays in these diagnoses.”

That’s another reason why it’s important for people dealing with IBD symptoms and seeking clarity on their cause to advocate for their medical needs. Visit a doctor as soon as a problem arises and be persistent if doctors dismiss the symptoms.

Remember, no one understands your body better than you, so speak up!

Adapting to life in the in-between

It’s possible to live a fulfilling life alongside undiagnosed symptoms; it just requires a little extra planning. This tough in-between period requires patience, mental fortitude, and a robust support network.

Finding support and empowerment

A good place to start is to explain your symptoms to your loved ones. They can’t support you without the necessary information. Let them know that you need a shoulder to cry on and a hand to hold during this process. Allow them to show up to alleviate the burden.

Another crucial aspect of learning to thrive during the diagnostic process is learning to manage the symptoms independently, at least until a diagnosis offers solace in the form of proper treatment.

In the interim, lifestyle changes can alleviate the looming threat of flare-ups and empower you with a sense of control over the situation.

Diet tracking and modification

One way is through diet. Many people find that specific foods trigger their IBD symptoms, though these triggers vary widely among people.

“Keep a food journal to identify [your] food triggers, and remove them from your diet,” says Megan DeChatelets, MS, RD, CDN, a registered dietitian and nutrition consultant for Hilma. “A systematic elimination diet can also help identify food triggers.

“Some common triggers include gluten, refined sugars, dairy, red meat, caffeine, spicy foods, and high fat foods,” she adds.

Getting better sleep

Improving sleep hygiene should be another focus.

“As sleep contributes to overall physical and mental health, adequate time and quality of sleep can reduce the risk of IBD flare-ups,” DeChatelets notes.

Research backs this up. Not only does poor sleep quality contribute to more IBD flares, but it also heightens the risk of hospitalization or surgery.

One way to improve your sleep quality — apart from the usual sleep hygiene recommendations — is to make your bed a heavenly place to be; invest in good bedding and keep screens out of the room.

Dialing down stress

“Stress can contribute to digestive issues, including increased inflammation and IBD flare-ups,” says DeChatelets. “Being proactive about stress management via daily practices such as deep breathing exercises, yoga, and meditation can help to prevent flare-ups.”

Managing the mental health impact of waiting for a diagnosis

It’s reasonable to feel like diagnosis should be easier. It’s going to take time to get a diagnosis, though, so it’s important to be patient with yourself while you wait — especially with your mind. It can be hard to deal with the turmoil of being undiagnosed.

Once you know what you’re dealing with, the mental health burden of living with chronic illness does lessen.

In the meantime, try to take care of yourself as well as you can.

Try keeping a journal to monitor the impact of symptoms on your mental health from day to day.

Now’s also a good time to enlist the help of your support network, and consider seeing a therapist who specializes in helping chronically ill and disabled people.

Reach out online, too. A vibrant community full of fellow chronically ill folks is waiting to embrace you and offer a guiding hand through this journey.

If it’s the concept of being diagnosed with an “incurable” chronic illness that’s bogging you down, remember it’s not always as dire as Google makes it out to be.

The takeaway

“I tell patients that even if we do end up making a diagnosis of IBD, these diseases, for the majority of patients, are very manageable and treatable,” Coburn says. “I think sometimes these diagnoses carry a stigma of being invariably disabling or life-altering diseases when often the reality is quite the contrary.

“With the safe and effective medical treatment options available today, many patients with IBD can achieve excellent results.”