Irritable Bowel Syndrome (IBS)

Irritable bowel syndrome (IBS) is a health issue in the intestines (bowels). It is not clear how common it is in people with Down syndrome (DS).  However, we suspect that IBS is more common in adults with DS. The motility of the gut (the stretching and contracting of the gastrointestinal (GI) tract to push food through from mouth to anus) is often abnormal in people with DS. In addition, many people with DS seem to physically react to stress with a change in their gastrointestinal system.

The American Gastroenterological Association shares a great deal about IBS on their website including that:

• IBS is a common problem that is estimated to impact more than 35 million Americans.

• It does not cause bleeding of the intestines or cancer and does not cause long-term harm to the bowels.

• When the intestine of someone with IBS is examined, there is no abnormality seen.

• However, just like a headache, despite the lack of visual evidence, IBS can cause a great deal of pain and distress.   

• Symptoms may include abdominal pain, cramping, gas, bloating, and a change in the stool (bowel movement).

• IBS can affect a person physically, emotionally, and socially.

Types of IBS

• There are three different types of IBS:

  • IBS-D (IBS with diarrhea) which may include loose stool, a sense of urgency to have a bowel movement, cramping, and/or abdominal pain.

  • IBS-C (IBS with constipation) which may include difficulty passing stool, infrequent bowel movements, and/or a sense of needing to have a bowel movement but not being able to go.

  • IBS-M (IBS with mixed symptoms) which can have symptoms of both IBS-D and IBS-C.

Causes of IBS

• Factors that cause IBS include:

  • Inappropriate function of the muscle contractions of the GI tract causing abnormal movement of the intestines (dysmotility).

  • A heightened sensitivity of the nerves attached to the GI tract (visceral hypersensitivity).

  • Dysfunction in the connection between the nerves of the gut and brain (brain-gut dysfunction).

  • Stress in life that is not manageable exacerbates symptoms for many people.

  • The Mayo Clinic website includes additional possible causes:

    • Severe infection

    • Early life stress

    • Changes in gut microbes (bacteria, fungi, and viruses)

Evaluation

The evaluation starts with a good history. 

• It is important for the patient and/or family to provide details of the symptoms.  For example, what are the triggers? Are there particular times (or places) when the symptoms occur? Are there other symptoms that need to be assessed for a possible other cause (such as bleeding)?  Is there a family history?

• Has the person had, or have they been assessed for other health conditions that may be contributing, particularly those that are more common in people with DS?  For example, people with DS are more likely to have:

  • Hirschsprung’s disease which often results in surgery in infancy and can contribute to long-term gastrointestinal symptoms (a study on Hirschsprung's disease and DS found an incidence of 7.32%).

  • Celiac disease is more common in people with DS.

  • Inflammatory bowel disease. There is limited information in the research literature about inflammatory bowel disease (Crohn’s disease and ulcerative colitis) and DS.  An article from 2021 did an extensive literature review and found 18 reported cases of inflammatory bowel disease in people with DS; eleven had Crohn’s disease. The article concluded that the incidence of Crohn’s was increased in DS.

The provider will then do a physical exam.

The provider may recommend one or more tests: 

• Blood testing. There aren’t blood tests to confirm IBS, but blood testing will likely be done to assess for other causes of the symptoms.  Blood work that may be done includes a complete blood count (CBC) to assess for anemia, C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR) to assess for inflammation, chemistry panel to assess for liver and other problems, tissue transglutaminase IgA to assess for celiac, and others depending on the symptoms.

• Stool testing for infections may be done.

• Depending on the symptoms and concern for other possible causes for the symptoms, further evaluation may include abdominal x-rays, CT scan of the abdomen and pelvis, ultrasound of the gall bladder, liver, and pancreas, or possibly others.

• Breath test or other test to assess for lactose intolerance (intolerance of the sugar in dairy) may also be done.  Alternatively, a trial of assessing symptoms with no or limited dairy in the diet or with taking lactase tablets that aid in digestion of lactose can be done to assess if lactose intolerance is a likely cause of the symptoms.

• Depending on the symptoms, an upper endoscopy (EGD) and/or colonoscopy may be recommended.

Treatment

In our experience in working with people with Down syndrome, we have recommended a variety of treatments.  Both the condition and the treatment tend to be unique for everyone so careful assessment of the individual’s symptoms, triggers, etc. is important in determining the treatment approach.  Ongoing reassessment is important to continue measures that seem to be helpful, eliminating those that do not, and continuing to consider new approaches if the present ones are not working well.

• Diet and nutrition

  • The dietary needs of people with IBS vary so what works for one person may not work for another.  Doing a food journal before changing the diet can help determine if there are certain foods that are contributing to the symptoms. Some diet management strategies some individuals find beneficial include:

    • Limiting foods that the diet diary indicates are likely contribute to symptoms.

    • Limiting dairy products and high-fat foods.

    • Making sure there is plenty of fiber in the diet.

    • Drinking plenty of water (particularly when constipation is a symptom).

    • Limiting coffee and other sources of caffeine.

    • Eating smaller portions (some find it helpful to eat smaller portions more frequently rather than follow a typical 3-meal schedule).

    • FODMAP diet which limits a group of 5 sugars in the diet (lactose, fructose, fructans, galactans, and polyols (for more on the FODMAP diet, see the American College of Gastroenterology.

• Medical management

  • There are several medications that may help with symptoms including:

    • For IBS-D, there are medications that slow or stop diarrhea such as loperamide (Imodium) and others.

    • For IBS-C there are several choices that work in a variety of ways to treat constipation including fiber supplements, stool softeners, laxatives, and others.

    • Probiotics help some individuals.

    • Antidepressants and anti-anxiety medications help some people.

    • Anti-spasm medications reduce symptoms for some individuals.

• Behavioral management

  • Stress management and relaxation techniques. Resources on managing stress for individuals with Down syndrome are available in our Resource Library. 

  • Sensory strategies. 

Contact your health professional to discuss the right treatment options for you.