When gastrointestinal issues force you to leave the dinner party early, cancel plans with friends and family, and miss work or school, it can feel incredibly isolating – but you’re not alone. According to a 2023 study published by the American Gastroenterological Association, nearly 2.5 million Americans live with inflammatory bowel disease, and people with Crohn’s disease account for more than 1 million.

Crohn’s disease is a lifelong condition involving chronic inflammation of the gastrointestinal (GI) tract, leading to uncomfortable symptoms. With this in mind, a new diagnosis can be scary. Below, we’ll lead you through what you need to know about Crohn’s disease, from identifying flare-ups to finding the right treatment for your lifestyle.

Signs and symptoms of Crohn’s disease

Symptoms of Crohn’s disease typically come and go as “flare-ups.” During a flare-up, your symptoms are more frequent and potentially severe. Crohn’s disease can also go into “remission” – periods of time in which you experience only mild symptoms or are symptom free.

A flare-up can last anywhere from a few days to a month or more, whereas remission can be maintained for years through proper treatment.

During a flare-up, symptoms range in severity and can develop gradually or come on suddenly. One sign that you are having a flare-up is experiencing a sudden and dramatic change in bowel movements that lasts for more than three days.

Crohn’s disease symptoms include:

  • Abdominal pain and cramping
  • Severe diarrhea
  • Bloody stool
  • Diminished appetite and weight loss
  • Mouth sores
  • Fever
  • Chronic fatigue

The symptoms of Crohn’s disease can have a domino effect. Gastrointestinal inflammation, in addition to many of the symptoms above, can also cause poor nutrient absorption, which produces its own health issues.

While more commonly diagnosed in adulthood, Crohn’s disease can affect children as well. Among pediatric patients, Crohn’s disease can cause delayed development or stunted growth.

Some Crohn’s disease symptoms are unique to women

Crohn’s disease is equally common among men and women – neither gender is more or less likely to have it. However, women may experience additional symptoms related to Crohn’s disease, like:

  • Painful urination
  • Pain during sex
  • Irregular periods
  • Iron deficiency and anemia
  • Difficulty with pregnancy

Women with Crohn’s disease may also be at a higher risk of osteoporosis. Steroidal treatment for Crohn’s disease can raise that risk even higher. If you are a woman with Crohn’s disease, your primary care doctor and gastroenterologist will work together to find the best treatment plan for you.

Crohn’s disease vs. ulcerative colitis

Crohn’s disease is one of two conditions that fall under the category of inflammatory bowel disease (IBD). The other is ulcerative colitis. Crohn’s disease and ulcerative colitis share many of the same symptoms, and both are typically diagnosed before or around the age of 30. However, Crohn’s disease can affect any part of the GI tract, while ulcerative colitis only impacts the colon, causing inflammation in its innermost lining.

IBD is not the same as IBS

IBD can sometimes be confused with irritable bowel syndrome (IBS), but the conditions are very different. IBS doesn’t involve inflammation, and recent studies have shown that IBS may be related to hypersensitivity of nerves in the gastrointestinal walls. IBS can be uncomfortable – causing abdominal cramping, bloating, diarrhea and constipation – but it doesn’t lead to complications like IBD does.

The cause of Crohn’s disease isn’t entirely known to doctors

What we do know is that Crohn’s disease is the result of an autoimmune response, when the immune system mistakenly targets and attacks healthy parts of the body. With Crohn’s disease, the immune system confuses the bowel as a foreign presence in the body, triggering an immune response and leading to chronic inflammation in the intestines or anywhere in the GI tract.

Doctors aren’t sure why the immune system becomes confused in this way, but it could be due to a combination of variables, including genetics, environmental factors or unique differences in gut microbiome.

Crohn’s disease may be genetic

Many factors play a role in your chances of Crohn’s disease, including certain genes. Research has shown that between 5-20% of people who develop inflammatory bowel disease have a first-degree relative (a parent, child or sibling) who also has IBD. This is a more common characteristic of Crohn’s disease than ulcerative colitis.

Your likelihood for Crohn’s disease also goes up if both your biological parents have it.

Certain factors can make Crohn’s disease more likely

These are known as your risk factors. Even though the exact causes of Crohn’s disease are unclear, there are certain risk factors that can make you more likely to develop it, including:

  • Age – The majority of people with Crohn’s disease are diagnosed before they turn 30. The prevalence is highest among people between 15 and 35 years of age.
  • Smoking – Smoking can decrease blood flow to your digestive tract, weaken your intestinal walls and disrupt your immune system, all of which greatly increase your chances of developing Crohn’s disease.
  • Ethnicity – A higher rate of Crohn’s disease has been observed in people of Eastern European descent and Jewish people with lineage in Europe.
  • Environment – Recent research has shown that you may be more likely to develop Crohn’s disease if you live in a developed country, in urban areas or in northern climates.
  • Gut microbiome – Recent research has shown that people with a high number of certain bacteria in their gut may be more susceptible to Crohn’s disease.

Most of the time, Crohn’s disease comes on gradually, so you may only notice mild symptoms at first, if any. It can be hard to talk with your doctor about any gastrointestinal issues you are having, but it’s important to inform them if something seems wrong. Your symptoms are a key part of the diagnostic process, and hearing about them will help your doctor decide what tests to run.

To diagnose Crohn’s disease, your doctor may perform any of the following:

  • Stool test – Your doctor may request that you provide a stool sample, which will then be tested in a lab for biomarkers. Biomarkers are characteristics that show inflammation or illness in the body. As white blood cells are a key part of the immune system response, the lab will look for signs of abnormal white blood cell activity in your stool sample.
  • Endoscopy – An endoscopy is a nonsurgical procedure that allows your doctor to see inside your body using a thin tube with a camera and light attached to its tip. This is called an endoscope. Your doctor may perform an upper endoscopy to view your upper digestive tract, a sigmoidoscopy to view your lower digestive tract, or a colonoscopy to view your colon. During this procedure, your doctor may also take a biopsy, or a small sample of tissue, from one part of your intestines for further testing.
  • Bowel imaging – To get a clearer picture of your gastrointestinal organs, your doctor may perform an MRI or CT scan, which will allow them to see the extent of any inflammation or scarring.

Treatment for Crohn’s disease

There is currently no cure for Crohn’s disease, but treatment methods are improving with each passing year. The main goal of treatment is to prevent flare-ups and help you stay in remission for as long as possible. Maintaining remission can help you avoid future complications.

While proper medical treatment is a vital part of living with Crohn’s disease, your lifestyle at home is just as important. Many of the treatment methods mentioned below are used in combination to form a complete treatment plan.

Self-care

One of the best things you can do to alleviate the symptoms of Crohn’s disease is take care of yourself physically, mentally and emotionally.

  • Exercise regularly with low to moderate-intensity activities – Exercise is a powerful tool in combatting the effects of Crohn’s disease because it can lessen inflammation and improve your mood. Low-impact exercises like swimming, yoga and walking can be great options for both periods of remission and during flare-ups. You’ll just want to pay close attention to how you feel and stop if there’s any discomfort.
  • Prioritize sleep – The consistent inflammation and nutritional deficiencies common in Crohn’s disease can make you extra tired. To address Crohn’s-related fatigue, make sure you’re following your treatment plan and practicing good sleep hygiene habits.
  • Quit smoking and limit alcohol – If you have Crohn’s disease and you smoke, it’s important that you quit. You may still be able to drink alcohol in moderation, but the effects differ from person to person. Alcohol can trigger flare-ups of Crohn’s disease, make flare-ups worse and negatively interact with medications, so be sure to check with your doctor.
  • Find support systems – It isn’t easy living with a chronic disease. Your friends and family can be great sources of support, but you may also find it helpful to talk to a mental health professional or find support groups for people with Crohn’s disease.
  • Find a gastroenterologist – Once you’re diagnosed with Crohn’s disease, your primary care doctor will likely refer you to a digestive health specialist, known as a gastroenterologist. They will oversee your treatment and be your main partner as you navigate the disease.

Diet

Diet doesn’t cause Crohn’s disease, but it can factor into the length and severity of flare-ups. The way you eat during a flare-up will look slightly different from the way you eat while in remission, because you’ll want to prioritize easy-to-digest, soft and bland foods when you’re experiencing symptoms.

You may find it helpful to follow an anti-inflammatory diet for symptom remission. An anti-inflammatory diet emphasizes foods that either contain beneficial live bacteria (probiotics) or that feed the beneficial bacteria already in your gut (prebiotics). These foods include yogurt, kefir, steel cut oats, fermented veggies like sauerkraut and kimchi, garlic, onions, bananas and asparagus, among others. A registered dietitian can work with you to find a diet that suits you and your lifestyle.

Your doctor may recommend enteral or parenteral nutrition to allow your bowel to rest and recover from inflammation. Enteral and parenteral are different methods of delivering nutrients in liquid form – enteral is taken by mouth or delivered through a tube in the nose, while parenteral is delivered in a vein through an IV. Enteral and parental therapies are also important tools in preventing nutritional deficiencies related to Crohn’s disease.

Medication

Medication is an important part of a Crohn’s disease treatment plan. With an increasing number of medications available, it may take you and your doctor a few tries to find the right prescription for you.

Below are some of the medication types commonly prescribed for treating Crohn’s disease:

  • Corticosteroids are used on a short-term basis (usually when you’re having a flare-up) to provide some immediate relief. They curb your immune system response and reduce inflammation in a matter of hours or days.
  • Biologics are for those experiencing moderate to severe Crohn’s disease. They are designed to block specific chemical messages in the body that are part of the inflammation process. Biologics are also effective at reducing fistulas. You may be prescribed another medication type known as immunomodulators to be taken in tandem with biologics. Immunomodulators help decrease the immune system’s response.
  • Antibiotics are used only as needed to treat infections that may be caused by Crohn’s disease, including abscesses.

Surgery

Some people with Crohn’s disease may eventually require surgery, whether to improve their quality of life or correct a life-threatening complication. Surgery is typically required to fix:

  • Stricture – Crohn’s disease can lead to a buildup of scar tissue and thickening in the walls of your intestines, causing them to narrow and create what’s known as a stricture.
  • Bowel perforation – Chronic inflammation may eventually create a hole in the intestinal wall, known as a perforation.
  • Fistula – A fistula is a connection between two body parts that aren’t normally connected. With Crohn’s disease, the constant wear on gastrointestinal tissue can create ulcers that eventually tunnel between bowel sections or between the internal and external anal area. Fistulas can also form between the bowel and other organs such as the skin, vagina, bladder and uterus.
  • Abscess – An abscess is a fluid-filled pocket created by a perforation or fistula that can become infected. Abscesses are usually treated with antibiotics, but sometimes they will have to be surgically drained.

The most common surgeries performed to correct issues related to Crohn’s disease are:

  • Strictureplasty – To correct a stricture and avoid a bowel obstruction, a surgeon will make a horizontal cut across the narrowed section of intestine and then close the incision vertically. This shortens and widens the area.
  • Small bowel resection – If you are not a good candidate for strictureplasty, you may be recommended for a small bowel resection. A surgeon will remove the affected section of your small intestine and reattach the two remaining ends of healthy tissue to each other.
  • Large bowel resection – Similar to a small bowel resection, a large bowel resection involves removing a damaged segment of your large intestine and then reconnecting the healthy tissue.
  • Ileocecal resection – In this procedure, a surgeon will remove the end of your small intestine, known as the terminal ileum (which is often severely damaged by Crohn’s-related inflammation) as well as the first part of your colon, the cecum. Your small intestine is then connected to your colon.
  • Ostomy surgery – If your doctor decides that a section of your GI tract needs time to rest and heal, they may recommend ostomy surgery. An ostomy is a surgically created hole in your body through which waste can pass from your small or large intestine and into an external bag.

Don’t leave Crohn’s disease untreated

A good life with Crohn’s disease is possible, and with more treatment options than ever before, you can get the care you need while still enjoying the things you love. And, although managing Crohn’s can be overwhelming, you don’t have to do it alone – digestive health experts at HealthPartners are ready to help.