Diarrhea. Abdominal pain. Joint pain. Fatigue. Anemia. Weight loss. Those are just a few of the symptoms that come with a diagnosis of Crohn’s disease, the inflammatory bowel disease that can cause irritation anywhere in the digestive tract.
“It’s an abnormal immune response to your own gut bacteria,” David Hudesman, a gastroenterologist and director of the IBD program at NYU Langone Medical Center, told The Huffington Post. “And your body keeps attacking itself.”
Research hasn’t yet answered every question about why some people develop Crohn’s ― but they do know some people are genetically predisposed to the disease and recent research has determined that certain bacteria in the digestive tract play a key role.
“But, you need some type of trigger in the environment to set the disease off,” Hudesman said, such as getting a stomach bug or infection or having a reaction to an antibiotic.
Besides the most common symptoms, some people also get joint pain, rashes, sores in their mouth and eye pain, Hudesman said. And if Crohn’s is left untreated for a long time (or if the condition is poorly managed), it can cause ulcers, larger painful infections, inflammation in the joints, eyes or skin and more severe digestive problems.
The idea of having a disease that can affect the rest of your life in your 20s can be very daunting.Avery Hallberg
Treatment ranges from mild antibiotics to regular injections to surgery, depending on the stage and severity of the disease. The goal of treatment is to keep the disease under control ― the disease is never technically cured.
Crohn’s management requires regular monitoring, even when you feel fine. “Just because you’re feeling well doesn’t mean things are OK inside,” said Hudesman. But that doesn’t mean people with Crohn’s are limited ― they can travel, have a family and live otherwise healthy lives.
But that doesn’t mean that living with the disease is easy for the more than half a million people in the U.S. currently living with Crohn’s. And it certainly doesn’t mean that keeping Crohn’s under control is as simple as popping a couple of pills. We asked members of our HuffPost Lifestyle Facebook community who have been diagnosed with Crohn’s (or who care for someone with the disease) what they wished everyone else knew about the condition.
1. “People have no idea the amount of fatigue and pain I deal with every day.”
“There is so much more involved in this disease than what people know. It literally affects every part of your body. People have no idea the amount of fatigue and pain I deal with every day. I have been diagnosed with small fiber nerve neuropathy as a side effect of Crohn’s, which means the nerves in my hands and feet are dying.
The idea of having a disease that can affect the rest of your life in your 20s can be very daunting and it takes a lot to work through.”
― Avery Hallberg, told HuffPost.
2. “Flare-ups can occur at any time.”
“My husband was diagnosed with Crohn’s in his early 20s. One word I would use to describe this disease is unpredictable. Flare-ups can occur at any time. What was a cause one time may not be a cause the next time. There are varying degrees of the disease and no one person is affected the same.”
3. “It affects almost every joint in my body.”
“I live everyday with something that causes debilitating pain and extreme exhaustion. It affects almost every joint in my body along with the digestive tract. Just because I have seen my [doctor] and he gave me a new medicine does not mean I will be healed. I have to live the rest of my life with this awesome disease,” said Bethany Grey-Burton.
She is now 38, but she was tested six times before she was diagnosed with Crohn’s at age 32.
“Get a second opinion,” she added. “If you are not sure about what the doctor is telling you, ask lots of questions. I did and it saved my life.
4. “Just because I look OK doesn’t mean I am feeling OK.”
“Just because I look OK doesn’t mean I am feeling OK. The harsh reality of living with an invisible illness is that there are no obvious physical signs. I get out of bed and go to work and people think I’m OK. The reality is it takes all my energy to get out of bed and get to work but it means I can have a small amount of normality. I’ve had Crohn’s for 2 years now and am still adjusting!”
The harsh reality of living with an invisible illness is that there are no obvious physical signs. I get out of bed and go to work and people think I’m OK.Lauren Stewar
5.“I want people to know it’s affected a lot of kids.”
Carla DiNatale Smith’s 9-year-old son has Crohn’s disease. He was diagnosed at age 7.
“The amount of mental and physical pain is so sad. My son suffers from malnourishment and malabsorption issues. A lot of people don’t know about the lack of growth issues. Joint pain. Arthritis. Skin and eye issues,” DiNatale Smith said. “I want people to know it’s affected a lot of kids.”
6. “I’m also losing my eyesight.”
“I’ve been living with Crohn’s disease for 18 years. Along with all the other diseases that come with it, I’m also losing my eyesight. Arthritis can be debilitating. Tired all the time ― yet [I] can’t always sleep [because of] pain or cramps. Most prescription drugs have too many bad side effects.”
7. “I don’t take a good day for granted ever.”
“Crohn’s can be painful and cause great discomfort. Some days you just feel exhausted for no reason,” David Plottner, told HuffPost. He’s 34 now, but has had Crohn’s for 12 years. “I went on the doctor-recommended meds. The side effects of those drugs actually lowered my quality of life.
“It’s hard to keep a job because of its flare ups and frequent bathroom breaks,” he said. “The cramping and embarrassing bathroom breaks and fatigue are the biggest issues for me with this battle. I have good days and bad days. I don’t take a good day for granted ever.”
Sarah DiGiulio is The Huffington Post’s sleep reporter. You can contact her at firstname.lastname@example.org.