No, it’s not cancer. And no, you’re not contagious. But if you’ve just received a Crohn’s diagnosis, those may seem like the only two bright lights right now. The awkward and painful symptoms of a chronic condition like Crohn’s disease can really mess with your mojo. But there are reasons to feel hopeful: Significant advances in the treatment over the last decade—thanks in large part to a new class of medications known as biologics—means your prognosis has never been better. Learn more about your treatment options, here.
We went to some of the nation’s top experts on Crohn's to bring you the most up-to-date information possible.
Jami Kinnucan, M.D.Gastroenterologist, IBD Specialist, and Assistant Professor of Medicine
Stephen Lupe, Psy.D.Clinical Health Psychologist Specializing in IBD
Neilanjan Nandi, M.D.Director of the Inflammatory Bowel Disease Center
What Is Crohn’s Disease Again?
As a reminder, Crohn’s disease is triggered by the immune system’s white blood cells attacking your body’s healthy tissue in the digestive, a.k.a. gastrointestinal (GI), tract. That produces inflammation, causing ulceration and tissue swelling that limits your body’s ability to process food, absorb nutrition, and eliminate waste.
The result: Abdominal pain, diarrhea, and weight loss.
Categorized as an Inflammatory Bowel Disease (IBD), Crohn’s is most likely to strike in the small or large intestine. Of the estimated 3.1 million Americans who have received an IBD diagnosis (which also includes ulcerative colitis), about 780,000 have Crohn’s disease, according to the Crohn’s & Colitis Foundation.
It affects men and women equally, and can occur at any age, although it is most common in your 20's, and again in your 60s and 80s.
The main goal of Crohn’s disease treatment is achieving and maintaining remission so that the inflammation the disease causes in the GI tract is calmed and your symptoms will be reduced or disappear altogether. Sounds dreamy, right?
Getting to that point isn’t always easy or straightforward.
Because Crohn’s disease manifests itself differently depending on its location in the digestive tract, it’s a unique disease for every person. So the treatment approach you and your doctor take will also need to be unique, and will likely require trial and error. It may also change over time, as your body and the disease adapt and evolve.
When Crohn’s is not in remission, you’ll experience what is known as a flare—the reappearance of inflammation and symptoms that may include frequent and urgent bowel movements, diarrhea, bloody stools, abdominal pain, fatigue, lack of appetite, and weight loss. Your treatment will likely be different during a flare than when you’re in remission.
Treatment generally involves medications, and while there are more types of meds available than ever before, there’s also a catch: Almost 50% of people don’t respond to some of the medications, but there is no way to predict who, which medication, or why.
In the early days of sorting out what works best for you, get used to seeing your doc—a lot. It’s easy to feel overwhelmed by all the appointments and tests at times, but ultimately, your healthcare team will find a treatment plan that is most effective for your situation, and you’ll begin to get your life back.
Your plan may include medication, complementary therapies that can help both physically and emotionally, and possibly surgery. Let’s take a closer look.
Medications to Treat Crohn’s Disease
Some of the meds your doctor may prescribe are to get your symptoms under control during a flare. Others induce remission or help keep you symptom-free once you’re there. They can come many forms, including oral pills, suppositories, infusions, and injectable drugs.
There are five classes of Crohn’s medications you may encounter:
Aminosalicylates: These 5-aminosalicylic acid (5-ASA) compounds are used mostly for treating ulcerative colitis, but can work to decrease inflammation in the GI tract for mild to moderate Crohn’s flares.
Sometimes, they’re used as a maintenance treatment to prevent relapses. Because these drugs work best in the colon, they are not effective if Crohn’s is only in the small intestine. Examples include Azulfidine (sulfasalazine) and Apriso or Asacol (mesalamine).
Antibiotics: Crohn’s patients are also especially prone to a serious and highly contagious intestinal infection known as Clostridioides difficile (C. diff), which needs to be treated with antibiotics. You may be given Cipro or Proquin (ciproflaxin) or Flagyl (metronidazole). These antibiotics are also sometimes used to treat anal or perianal fistulas (abnormal connections between the gut and the skin) that can sometimes develop.
Corticosteroids: When you’re first diagnosed with Crohn’s, you’ll likely be given a steroid to get your symptoms under control. After that, steroids are often used during moderate to severe flares.
These drugs, which work by suppressing the entire immune system, have significant side effects, such as bone loss, cataracts, infection, sleep disturbance, and mood swings, so you should only use them for short periods. Examples of include Deltasone (prednisone) and Oraped or Prelone (prednisolone). They can also cause your blood pressure to become elevated and increase your blood sugar. If you have high blood pressure or diabetes, it is important to also follow closely with your other medical providers managing your other health issues while taking steroids.
Immunomodulators: These medications modify immune system activity to prevent ongoing inflammation. They are typically used to maintain remission in patients who have not responded to other meds or have only responded to steroids. Examples include Rheumatrex (methotrexate) and Imuran (6-mercaptopurine).
Biologics: This newest class of Crohn’s treatment was initially used for people with moderate to severe symptoms that did not respond well to other therapies.
However, biologics are starting to be used more and more as first-line treatments in many patients. They are created from antibodies grown in a lab that stop certain proteins in the body from causing inflammation, or block white blood cells from reaching inflamed tissues.
Cimzia (certolizumab pegol)
Simponi (golimumab) may also benefit certain types of Crohn’s.
If medications are no longer effective, or if you develop complications, you may need surgery.
The good news: What once was a likelihood for up to 70% of people with Crohn’s is now rapidly becoming a last resort, as improved drugs are able to slow the progression of the disease before major damage is done to the organs.
Surgery is not a “cure”: About 30% of people who undergo surgery experience a recurrence of symptoms within three years; 60% within 10 years.
Still, it can significantly reduce pain and improve the health of the GI tract. The type of surgical procedure varies depending on the location of the disease. The goal is always to conserve as much of the bowel as possible, but in some severe cases the colon and/or rectum may need to be removed. Procedures for Crohn’s include:
Chronic inflammation can cause thickening and scar tissue in the digestive tract, narrowing the intestine—known as a stricture—which can lead to blockages that prevent stool from passing through the body.
This procedure widens the intestine through lengthwise cuts in the narrowed areas that are then sewn crosswise, essentially shortening and widening the affected area.
Strictureplasty is most effective in the ileum and jejunum, the lower sections of the small intestine. It is less effective in the duodenum—the upper section of the small intestine.
About half the patients who have this procedure will go on to need subsequent surgeries. Still, it’s preferred to removing portions of the small intestine—known as a small bowel resection—which can lead to a complication known as short bowel syndrome.
A fistula forms when inflammation causes ulcers to extend through the entire thickness of the bowel wall, creating a tunnel-like opening for pus to drain through.
In Crohn’s, a fistula occurs most commonly between two parts of the intestine or the intestine and another organ, such as the bladder or vagina. Fistulas can also extend to the skin surface, and women can develop a hard to treat fistula between the vagina and rectum.
Up to 50% of people with Crohn’s will develop a fistula, which requires immediate medical attention, at some point.
Surgical options include inserting a medical plug or applying medical glue to close the fistula, opening it up with a lengthwise incision that allows it to heal, or placing a thin surgical cord, known as a seton, in the fistula to drain any infection.
If you develop an anal fistula—between the inside of the anus and the skin surrounding it—your surgeon will instead perform a procedure known as a fistulotomy to open the fistula and clean it out. This is done to preserve the anal sphincter muscles, which are super important because they hold your poop in your rectum!
Small and Large Bowel Resection
In this surgical procedure, a portion of your large or small intestine that has been damaged is removed and the two healthy ends are reconnected.
A small bowel resection, done to treat a stricture or repair a hole in the wall of the small intestine, may relieve symptoms for years: Only about 50% of patients will have a recurrence of their disease within five years, typically at the site where the healthy ends of intestine were joined together.
A large bowel resection is similar to small bowel resection except that it removes diseased tissue in the colon and rectum. It has about the same success rate as well, with recurrences 50% of the time, typically at the surgical site.
Colectomy and Proctocolectomy
If you have severe Crohn's or complications from the disease, you may need to have your colon removed (colectomy) or both the colon and rectum removed (proctocolectomy).
After removing the colon, your surgeon will join the lower part of your small intestine (the ileum) to the rectum. Afterwards, you will still be able to pass stool through your anus and won’t need an external pouch to collect it.
If you need to have both the colon and rectum removed, you will most likely have a variation of the surgery known as proctocolectomy with end ileostomy. In this procedure, the end of the small intestine is connected to a stoma, a small quarter-size surgical hole made in the abdominal wall to divert waste into an external ostomy bag.
As unpleasant as that sounds, many people who have this procedure say it’s actually a relief to have control over their lives again. Ostomy bags are designed to lay flat and not show under clothing. If you have an ileostomy, there’s a good chance you can do everything you did before—play sports, travel, and work.
Stories have the power to change lives and perspectives about health conditions. Read and watch how these people have overcome health challenges associated with Crohn's disease.
Other Types of Therapy
Beyond meds and surgery, other complementary therapies may alleviate symptoms and help you cope with all the psychological stresses of Crohn’s disease. Some options include:
What you eat doesn’t cause Crohn’s, but the right food choices can help you feel better. Together with a dietician, you can figure out what’s best to eat during a flare when you’re dealing with diarrhea, nausea, and loss of appetite, making it difficult to consume enough calories.
You can also decide what’s best to eat during remission to maximize the quality of your nutrition while your body is feeling good. Most experts recommend you follow a Mediterranean diet (whole grains, vegetables, fruits, healthy fats, lean meats, fish, beans, and eggs) during this time.
If you have Crohn’s, you may have vitamin and mineral deficiencies, including vitamin B12, vitamin D, and iron, because your body doesn’t digest food properly. Your doctor will do bloodwork and may prescribe supplements to help alleviate these deficiencies and prevent you from becoming malnourished.
Daily physical activity has multiple benefits when you have Crohn’s disease:
It produces positive changes in the gut microbiome, which may help improve your digestion.
It improves people’s perception of their symptoms, causing them to feel less pain.
It reduces anxiety and stress, common triggers of flares, through the production of mood-boosting endorphins during exercise.
It prolongs remission periods.
Of course, having Crohn’s means you may feel too sick to exercise during a flare, so cut yourself some slack. Just know that every little bit of activity you can manage helps—whether it's a morning yoga routine or a 20-minute walk.
If anxiety, depression, and a host of nasty symptoms are keeping you from sleeping at night, it’s understandable—but also critical to address. Research shows that poor sleep leads to shorter periods of remission between flares in people with Crohn’s, possibly because it causes changes in the microbiome that could stimulate an abnormal immune response.
Things you can do to remedy the situation:
Stick to a regular bedtime and get up at the same time each morning.
Don’t watch TV or stare at your phone in bed.
Read, deep breathe, or meditate on the couch if you can’t sleep.
Jot down your worries in a journal or notebook then put it away.
Keep your bedroom temperature on the cooler side (about 64 degrees) and dark.
Turn off electronics that emit sleep-disrupting blue light.
Face your alarm clock away from you so you aren’t staring at the time.
Crohn’s impacts every aspect of life: relationships, work, social activities, body image, sexuality, and self-esteem, just for starters. Feelings of anxiety, fear, and anger are common, as are elevated stress levels.
Experts are just beginning to understand the connection between the mind and the gut, but we do know that 95% of serotonin—the feel-good brain chemical—is actually made in the gut. We also know that the brain and the gut are in constant communication: The gut sends messages about what’s going on up to the brain, which affects mood, then the brain sends messages about mood back to the gut. This constant communication between the two is called the gut-brain axis, and it directly affects the way our gut functions.
That may be one reason why people with Crohn’s disease have a two to three time’s higher rate of anxiety and depression than the general population. If you are struggling with psychological symptoms from Crohn’s, several types of therapy could help:
Cognitive behavior therapy (CBT) helps people reframe negative thinking patterns into positive ones.
Acceptance and commitment therapy (ACT) teaches people to accept their feelings and thoughts and commit to making changes in their behavior.
Gut-directed hypnotherapy uses relaxation, suggestion, and visualization to calm the digestive tract and cope with pain.
Mindfulness therapy leads to awareness of your thoughts and acceptance of the situation.
Look, talking about your Crohn’s isn’t going to make it magically disappear. But sharing your emotions about the challenges you’re facing can sometimes make things less daunting. These therapies can arm you with the coping skills you need to feel stronger and more positive as you power your way through Crohn’s treatment.
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In many cases, yes. Major exception: Methotrexate, an immunomodulator, can cause abortion and congenital deformations. Both women and men should stop taking methotrexate three to six months before conception. It’s also best not to be on steroids early in pregnancy or certain biologics in late pregnancy. Check with your doc.
What is short bowel syndrome?
The small intestine has three sections, each of which does a specific job in the digestion process. When large amounts of the small intestine are removed, it literally shortens your bowel, which makes it tough for the body to absorb adequate amounts of water, vitamins, and other nutrients. The most common symptom is chronic diarrhea.
How can I stop stressing over needing surgery?
For starters, get out and socialize to take your mind off your illness. Join a support group nearby or online. The more you get to know other Crohn’s patients, the more coping tips you’ll learn and the more normal you’ll feel. Exercise and mindfulness practices like meditation, deep-breathing, and yoga are also good stress-reducers.
Can I take over-the-counter meds for symptoms?
Probably, but talk to your doctor first to make sure they won’t interact with your prescription medications. Generally speaking, anti-diarrheal and anti-gas medications are usually okay, as is acetaminophen for pain. Avoid nonsteroidal anti-inflammatories (NSAIDs) such as ibuprofen, naproxen, and aspirin because they may irritate your digestive system.
Recurrence of symptoms after surgery:The Medical Clinics of North America. (1990). “The Problem of Post-Operative Recurrence of Crohn’s Disease.” ncbi.nlm.nih.gov/pubmed/2404175
Risk factors for recurrence after surgery:Annals of Gastroenterology. (2017). “Risk Factors for Postoperative Recurrence of Crohn’s Disease with Emphasis on Surgical Predictors.” ncbi.nlm.nih.gov/pmc/articles/PMC5670279/