“Crohn’s is an unpredictable demon,” says singer/songwriter Sofia B. She should know. Like many who finally learn they have Crohn’s, her diagnosis followed months of anxiety over mysterious symptoms.

In Sofia’s case, the symptoms included vomiting and diarrhea, five or six hospitalizations (she lost count), three blood clots, fevers, and drastic weight loss. “Honestly, it was a relief,” she says after being diagnosed. “It was nice to feel like something was legitimately wrong with me, and that I wasn’t crazy.”

Path to Diagnosis

Crohn’s disease is known for being difficult to diagnose. It occurs when the body’s immune system attacks the healthy bacteria of the intestine. This causes chronic inflammation in the gastrointestinal tract.

Crohn’s is considered an inflammatory bowel condition and is in the same class as colitis. Early Crohn’s symptoms can include:

  • intense stomach pain and cramping
  • diarrhea
  • malabsorption with associated weight loss
  • mouth sores
  • joint pain

But we don’t fully understand what causes Crohn’s, and symptoms are different for everyone.

Several factors can be involved in the development of the disease, including family history and environmental factors. The uncertainty of the cause coupled with the mystery of symptoms and the elusiveness of diagnosis bring up many stark emotions.

Sofia ramped up her self-care when she learned that she had Crohn’s. “I made a conscious effort to work through all of my emotions surrounding my health and immediately sought a therapist,” she says. She also used music to help her heal.

Once her health stabilized, she treated herself and her best friend to a trip to New Orleans, and wrote the song “Soldiers” to reaffirm the importance of love and friendship in tough times. 

Many people describe feeling relieved when they are diagnosed with Crohn’s.

Noelle Gardner is the creator of SuperCoolArt.com. She feels that her Crohn’s diagnosis provided resolution and a way forward.

“I had been sick for seven torturous years,” says Gardner. “So finally being given a name for what was happening to me empowered me. It gave me the opportunity to research, study, and try various options to regain my life and my health.”

Mixed Emotions

A sense of relief and a feeling of being able to take back control are common first reactions, some people with Crohn’s note. “I was scared at first,” says 43-year-old teacher Lynne McFedries.

McFedries’ first encounter with Crohn’s happened when she was hospitalized at age 14 with stomach pain and underwent surgery to remove several inches of small intestine. Ten years later, she had a similar experience and lost several feet of intestine to surgery. “There was a process of coming to peace and living a life with Crohn’s,” she says.

Noelle Gardner speaks plainly about the relationship between Crohn’s and embarrassment.

“Understand that these digestive diseases also come with humiliation due to their nature,” she says. People with Crohn’s often need to limit activities to situations when they know they can reach a bathroom.”

She advises friends, “Don't try to force them to go out and do things when they might be afraid that there won't be a restroom nearby. Chose activities that allow them to be in their comfort zone.”

For marathoner Evan Wood, the search to learn what was wrong took up so much of his life and attention. “The mystery and suspense of figuring out what was wrong with me was so distracting and embarrassing that I wanted to just accept it as something that was out of my control and get on with my life.”

Finding a Way Through

Wood points out, “Crohn’s disease is a long distance battle. It’s not a game of inches, it’s a game of miles, a marathon of flare-ups and relapses and emergency room visits and bad spells.” That means people with Crohn’s have to learn to manage not just symptoms, but the emotions that come with them.

Though McFedries’ Crohn’s has been in remission for 19 years now, she doesn’t take it for granted. Family and friends have helped her work through her emotions and supported her in hard times. “Working through the emotions, I was lucky in that aspect. I had a great support system at home — my mom, dad, brother, boyfriend, and lots of friends. I could not imagine what it would be like to have to go through this alone.”

Reija Eden did not initially take advantage of support from her loved ones. “I worked through the emotions in private because I didn’t think my 20-year-old friends would understand what I was going through. Now, looking back, I should have looked for support groups and found others affected with the disease. Having other people to share these emotions with can help process them.” 

Among those Wood reached out to for support was his physician, Dr. Keith Benkov of The Susan and Leonard Feinstein Inflammatory Bowel Disease Clinical Center at Mount Sinai Hospital. Dr. Benkov also became Wood’s running coach and they’ve now completed three New York City marathons together.

If someone you love is diagnosed with a chronic condition, Wood has advice for you. “The most important thing to do is to maintain a close, supportive relationship that is considerate of the unique internal and external challenges that have an impact on the individual who is suffering.”