The Fatal Five in IDD: How Constipation Impacts Health

Originally known as the Fatal Four (which included aspiration, dehydration, constipation, and seizures), experts in the field of IDD care have identified sepsis as another serious condition for this population. For this reason, the nomenclature has changed to the Fatal Five.

How can you help your clients with intellectual and developmental disabilities (IDD) combat constipation and the other Fatal Five conditions to achieve a better quality of life?

Providing support, companionship, and dedicated, compassionate care can go a long way. By learning the signs and symptoms of constipation, and how to prevent it in your clients, you can help those you serve lead better lives.

To that end, let’s review how you as direct support professional (DSP) can work to prevent constipation among persons served.

Why is constipation one of the IDD Fatal Five?

Constipation is generally defined as having no bowel movement in three days or having only three bowel movements a week. Everyone is different, though, so some people may be constipated even if they do not meet this standard.

In one review, individuals with intellectual and developmental disabilities (IDD) were 250 times as likely as the general population to receive repeating laxative prescriptions. The same review found that 33-50% of the IDD population experienced constipation.

This is serious, because, if left untreated, chronic constipation can lead to death. According to the University of Bristol, long-term constipation can cause bowels to become swollen and burst.

While constipation is often rooted in lifestyle issues, there are medical contributors as well that are common across the IDD population. These include:

• Dehydration
• Not enough dietary fiber
• Lack of muscle function/tone
• Nerve problems or damage to the muscle in the colon and rectum
• Inactivity/immobility
• Certain medications, including iron and calcium supplements
• Surgery or hospitalization
• Certain medical conditions, including Crohn’s disease, multiple sclerosis, irritable bowel syndrome, pregnancy, and diabetes

To put this in context, individuals with cerebral palsy and Down syndrome commonly have reduced muscle tone, a high percentage of the IDD community experiences limited mobility or uses multiple medications, and individuals with pica eat non-food substances, which can contribute to bowel blockages. As a result, constipation is quite common within the IDD population.

Note that dehydration – one of the contributors to constipation – is another of the Fatal Five conditions that disproportionately affect individuals with intellectual disability.

The signs of constipation

Constipation is uncomfortable, and you can likely recognize it in yourself quite easily. However, it can be difficult to tell if someone you support is constipated. Watch for the following:

• Passing stools infrequently — Typically, fewer than three in a week or going longer than three days in between passing stools is a red flag. If left untreated, severe constipation can lead to sepsis.
• Hard or lumpy stools — Normal stools are typically soft, but not loose, and form a sausage shape.
• Straining on the toilet — Stool should pass comfortably and with relatively little effort. If your client is straining on the toilet, they may be constipated. Fortunately, while those with IDD are a risk of seizures, straining to poop cannot cause a seizure.
• Feeling like you still have to go — Individuals who are constipated may be able to pass a small amount of stool, but not empty their bowels.
• Abdominal bloating or pain — This may be caused by gas trapped in the colon, or in severe cases by the stool itself backing up in the body.
• Gas or liquid stool — Sometimes when feces are trapped in the colon, gas or liquid stool backs up and escapes around the blockage.

9 ways direct support professionals (DSPs) can prevent constipation

The most effective means of dealing with constipation is to prevent it. Direct support professionals (DSPs) should use these nine tips to help reduce the risk for constipation among the individuals they support:

1. Encourage a well-balanced diet

A diet that contains plenty of fiber promotes the movement of fluids and materials through the digestive system. Some people may experience an increase in constipation when they eat a lot of dairy products or red meat. This could be due to individual sensitivity, or it may be that these products are taking the place of fiber in their diet.

2. Integrate physical activity into the day

Physical activity increases the motility of the digestive tract, and it can help prevent stool from becoming lodged in the intestines.

3. Try probiotics

Some studies have shown that probiotics, like the kinds commonly found in some varieties of yogurt, can improve a multitude of bowel problems, including constipation.

4. Be aware of sodium

Salt in the body can cause the intestines to absorb additional water, drying out the stool and increasing the risk of constipation.

5. Increase fluid intake

Constipation occurs when stools are dry, so increasing fluids can reduce or prevent constipation.

6. Discourage alcohol consumption

Alcohol increases dehydration, and therefore also the risk for constipation.

7. Track bowel movements

Among individuals with risk factors or a history of constipation, track the frequency, size, and consistency of bowel movements. This will enable you to identify possible constipation and intervene early. For individuals who use the toilet independently, consider helping them develop a tracking system that they can complete on their own.

8. Support regular bowel habits

Refraining from having a bowel movement leads to greater hardening of stool, which may cause constipation. Help the individuals you support develop routines, such as using the toilet at a certain time of day, to promote healthy bowel habits. Plan ahead to ensure that people will have opportunities to use the toilet when away from home. Unless absolutely necessary, never advise someone to “hold it.”

9. Consider stool softeners

Many individuals benefit from regular use of stool softeners or fiber supplements to make their stools easier to pass. Note that although many of these are available over the counter, in many service settings you will likely require a doctor’s order to use them.

If a person suffers from frequent constipation despite these strategies, it’s important to alert the person’s medical team. Constipation can be a warning sign of other health problems and may be caused by an underlying and resolvable medical issue.

Final thoughts on constipation and the Fatal Five

Constipation is never pleasant, but it doesn’t have to be deadly. Having more information available about this condition, and how it relates to the other conditions in in the Fatal Five, can help your organization better serve those at higher risk.

DSPs and other caregivers need to know how constipation and the rest of the Fatal Five – aspiration, dehydration, sepsis, and seizures – interact and potentially cause other serious health problems. The only way to keep the Fatal Five from claiming more lives is education and prevention.

To learn more about the Fatal Five, read our other blog posts on the topic:

• Dehydration Signs and Risk Factors 
• How Constipation Impacts Health 
• Aspiration’s Dangers and Key Interventions 
• How to Prevent Sepsis