What Autistic People Need to Know If They Have Crohns Disease

Gastrointestinal symptoms are a problem for many autistic people. For some, the symptoms are an occasional concern. But for those with Crohn’s disease, the impacts can be much more severe.

Research suggests that digestive problems are about 4 times more common among autistic children than in neurotypical populations.

In a 2022 meta-analysis involving 11 million total study participants, researchers found an increased risk of inflammatory bowel disease (IBD) among autistic people. IBD is an umbrella term including both ulcerative colitis and Crohn’s disease.

It’s important to understand the relationship between Crohn’s disease and autism. If GI symptoms are left untreated, they may lead to sleep disturbance, behavioral problems, and psychological difficulties such as defiance, social withdrawal, anxiety, and irritability.

What is Crohn’s disease?

Crohn’s disease is a long-term illness that causes the digestive tract to be inflamed and irritated. It’s an autoimmune condition, which means the body’s immune system attacks the gastrointestinal tract as though it is an invader.

What is autism?

Autism is a neurodevelopmental condition that causes differences in the way people respond to the world around them.

Autistic people interact and communicate in ways that are different from neurotypical (not autistic) people. They also have highly focused special interests and repetitive speech or movement patterns.

How are Crohn’s disease and autism related?

Researchers aren’t certain exactly what causes the risk of gastrointestinal problems to be higher among autistic people. Genetics, diet, environmental factors, medications, and the gut microbiome may all play a role. Autism and Crohn’s both have gut-brain associations.

When researchers look closely at the gut microbiome — the bacteria living in the digestive tract — of both autistic and neurotypical people, they found important differences.

Autistic participants had more potentially harmful bacteria such as Clostridium, Shigella, and Enterobacter in their intestines. Many also had higher levels of Lactobacillus, a probiotic bacteria that may help protect people from infection or illness.

At the same time, some studies found less of another “good” genus of microbes called Bifidobacteria in the digestive tracts of autistic participants.

These differences may explain some gastrointestinal symptoms, and they may be tied to autism characteristics through a complex connection between the gut and the brain.

Some researchers have suggested that untreated, chronic gastrointestinal problems in babies and toddlers may make developmental delays and autism more likely as children grow.

Others think there may be a two-way relationship between the two conditions so that more severe symptoms in one condition could increase the severity of the other condition.

More research is needed to understand the connections.

What are the symptoms of Crohn’s disease?

The exact symptoms of Crohn’s disease depend on which part of your digestive tract is affected. For most people, the symptoms include:

pain
• cramping
• diarrhea
• weight loss
• fatigue

Some people also experience fever, nausea, loss of appetite, eye redness, and red bumps on the skin.

Studies have shown that irritability, aggression, and repetitive behaviors can all be more significant when gastrointestinal symptoms occur alongside autism.

In fact, behavioral problems are sometimes the only indication of a gastric problem.

How is Crohn’s disease diagnosed?

Diagnosing the cause of gastrointestinal difficulties can be complicated, especially if communication differences keep an autistic person from talking about symptoms such as pain.

To diagnose Crohn’s disease, a doctor or healthcare professional may perform some or all of the following tests:

• Medical history: This involves discussing your medical history, including similar symptoms in your family.
• Physical exam: During a physical exam, a doctor listens to your abdomen using a stethoscope and looks at your abdomen to see whether you have bloating or swelling.
• Blood tests: This involves taking a small sample of your blood to see whether your blood cells show signs of inflammation or anemia (when you don’t have enough iron in your blood).
• Stool sample: A stool sample involves providing a small sample of stool (poop) to the lab to make sure something else isn’t causing the symptoms.
• Colonoscopy: This type of exam involves a doctor looking at the inside of your lower colon using a narrow tube with a lighted camera on the tip.
• Endoscopy or enteroscopy: An endoscopy or enteroscopy are types of exams in which a doctor looks inside your upper intestines using a narrow tube that travels down your throat into your stomach
• Upper GI series: An upper GI series is a kind of test in which you drink a chalky liquid called barium that helps to make problem areas easier to spot on the X-ray that is performed.
• Computed tomography (CT) scan: A computed tomography (CT) test takes cross-section, detailed pictures of your digestive tract.

Because gastrointestinal symptoms are so common and often go undiagnosed, health experts recommend routine screening for GI symptoms for all autistic individuals.

What is the treatment for Crohn’s disease?

The most common treatments used to relieve Crohn’s symptoms are medications and bowel rest. If symptoms don’t resolve with these treatments, surgery is another option.

Medications

Health professionals aim to lower inflammation, calm overactive immune systems, ease pain and diarrhea, and treat infections. Common medications include:

• Aminosalicylates: While not Food and Drug Administration (FDA)-approved for Crohn’s, they’re sometimes used as anti-inflammatory agents.
• Corticosteroids: These are used on a short-term basis to help to reduce immune responses and inflammation.
• Immunomodulators: These slow immune activity and inflammation over time.
• Biologic therapies: These neutralize specific proteins that are involved in inflammatory pathways in your immune system.
• Antibiotics: Antibiotics help resolve infections that have developed related to fistulas or abscesses.
• Antidiarrheal medications: These can be used short term to control diarrhea.
• Pain relievers: Drugs such as acetaminophen can ease discomfort.

Bowel rest

Bowel rest is a short period during which you eat and drink only certain foods to allow time for the inflammation in your body to resolve.

The period could be as short as a few days or as long as a few weeks and could take place at home or in a hospital.

Some common options for bowel rest include:

• drinking easy-to-digest nutritional shakes or fluids
• receiving nutrition directly through a tube that a healthcare professional places in your stomach or intestine
• taking nutrition through an intravenous (IV) tube in your arm

Surgery

If symptoms are especially severe, or if other treatments haven’t helped, you may need surgery. Surgery may be more likely if you develop complications such as:

• fistula, an opening between organs that happens because of an infection
• blockage in your intestine
• bleeding
• other complications or severe symptoms.

Doctors may treat Crohn’s with any of the following surgeries, depending on your symptoms:

Small bowel resection

A small bowel resection involves removing a small section of your intestine that contains a blockage or is damaged by Crohn’s disease.

If possible, your surgeon can perform this surgery by making tiny cuts in your abdomen, guiding a small camera into your intestine, and removing a section of your bowel. That kind of procedure is known as laparoscopic surgery.

In some cases, it may be necessary to make larger incisions or cuts — about 6 inches long — before removing the damaged bowel section. That process is known as open surgery.

Large bowel resection

Large bowel resection, also called subtotal colectomy, is a procedure that removes a piece of your large intestine. As with small bowel resections, this surgery can be done laparoscopically or through open surgery.

Proctocolectomy and ileostomy

In some cases, it’s necessary to remove the entire colon (large intestine) along with your rectum. This is known as proctocolectomy and ileostomy.

During this procedure, your surgeon creates an opening in your abdomen, called a stoma. Then the surgeon connects the end of your small intestine to that opening, so your body can send waste into a pouch you wear on the outside of your body.

Special considerations for autistic people who need surgery

Surgery can present several challenges for autistic people and their caregivers. Unfamiliar environments, new sensory experiences, loss of routines, pain, and differences in communication abilities can add stress for everyone involved.

These challenges can lead to:

• needing more stimming behaviors
• injuring yourself
• talking about or trying to leave the clinical setting
• expressing intense emotions
• lashing out or acting violently
• opening surgical sites or wounds

It’s important that trusted, supportive caregivers be present when possible since they’re most likely to notice signs that you’re feeling anxiety.

Researchers also recommend taking these steps:

• Include healthcare professionals and others who understand your triggers, needs, concerns, and preferred soothing strategies in your healthcare team.
• Consider visiting the facility before your surgery date so you can get familiar with the place, meet your surgical team, and learn about the procedures.
• When possible, talk about your concerns and needs with your surgical team before the procedure, so you can collaborate on an intervention plan if you become anxious. For example, you might ask for a quiet space to wait for surgery, or you might ask to be the first patient of the day to lessen the amount of time you wait in an uncomfortable space. You might also want to bring comforting items with you from home.
• Complete pre-operative forms and paperwork at home, where you feel more comfortable.
• With a doctor’s OK, consider anti-anxiety medications that could ease your discomfort before and after surgery.
• Carefully consider devices such as catheters and surgical drains because these can cause extra discomfort and stress. It may help if the surgical team trains your caregivers on how to change your dressings and complete other tasks during recovery.

Can medications used to treat autism affect an autistic person’s Crohn’s disease?

Some medications used to treat symptoms associated with autism have been known to cause GI symptoms.

For example, selective serotonin reuptake inhibitors (SSRIs) can cause nausea and abdominal pain. Likewise, atypical antipsychotic medications can cause appetite changes and weight gain. Autistic people who take antiseizure medications may also have stomach pain and other GI symptoms.

It’s important to work with a multi-disciplinary treatment team if you have Crohn’s disease. Your healthcare team may be able to help you determine whether your symptoms are related to Crohn’s or another medication you’re taking.

You may also want to look at this Adverse Drug & Supplement Reaction resource compiled by the Autism Research Institute.

Can medications used to treat Crohn’s disease affect an autistic person differently?

There’s limited research on the ways Crohn’s medications could work differently with autism. One difficulty that can arise is compliance. That is, some autistic people may have trouble taking medications prescribed for Crohn’s disease.

For example, if a patient has difficulty with oral medications, another method of taking the medication — such as applying it to the skin — might be needed. Some healthcare professionals recommend avoiding corticosteroids if they disrupt thinking or cause mood problems.

Because medications interact with each other, it’s best to speak with your healthcare team about the specific medications you’re using and any side effects you may be experiencing.

What are the risk factors for Crohn’s disease for autistic people?

Autistic individuals have a higher risk of having Crohn’s disease or another gastrointestinal condition than the general population has.

Researchers think genetic factors and differences in the gut microbiome of some autistic individuals may raise the risk of developing Crohn’s disease or another gastrointestinal disorder.

What’s the outlook for autistic people who have Crohn’s disease?

More long-term studies are needed to fully understand how Crohn’s disease affects the overall health of autistic people.

Research reviews show that gastrointestinal problems can lead to anxiety, sensory issues, challenging behaviors, and sleep disturbance. For that reason, it’s important for adults and children with Crohn’s disease to work with specialists to treat symptoms and identify triggers when possible.

The takeaway

Autism raises the risk of gastrointestinal disorders such as Crohn’s disease. Although the relationship between autism and Crohn’s isn’t fully understood, genetics, inflammation, and the gut microbiome are likely factors.

Crohn’s symptoms can be treated with medication, bowel rest, or surgery if needed. It’s important to work with a gastroenterologist or bowel specialist to help manage medication side effects and interactions.

And it’s very important to consider how clinical environments and procedures should be adapted to meet the needs of the person being treated.

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