Getting Disability Benefits for Short Bowel Syndrome or Intestinal Failure

If you have severe intestinal failure (an inability to get enough nutrients from your digestive system), the Social Security Administration (SSA) recognizes that you won't be able to work. Intestinal failure can be caused by short bowel syndrome, chronic motility disorder, or mucosal disease of the small intestine.

Is Short Bowel Syndrome a Disability?

Yes, short bowel syndrome usually causes some level of disability. But short bowel syndrome (SBS) is a rare disease, affecting about three out of every one million people.

SBS is a medical condition where the body doesn't absorb enough nutrients because part of the small intestine is missing or isn't working the way it should. The small intestine is a long, narrow tube that extends from the stomach to the large intestine and is responsible for most of the digestion and absorption of nutrients.

Causes of Short Bowel Syndrome

Usually, short bowel syndrome occurs because of "resection" (surgical removal) of part of the small intestine. Resection is typically required because of other medical conditions, such as:

• Crohn's disease
• intestinal cancer
• traumatic injuries
• birth defects, or
• damage to the intestines from lack of blood flow (for example, by volvulus or necrotizing enterocolitis).

But someone can have short bowel syndrome even if a part of their intestine hasn't been removed (for example, an SBS patient might have chronic malnutrition due to trauma or inflammation that has made it impossible for the small intestine to absorb nutrients). And bowel resection (also called a partial colectomy) doesn't always result in short bowel syndrome.

Symptoms of Short Bowel Syndrome

The symptoms of short bowel syndrome vary from person to person and depend on the length of the remaining small intestine, but the most common symptoms include:

• diarrhea that can result in dehydration
• unintentional weight loss and malnourishment
• fatigue and weakness
• bloating and cramping
• heartburn
• loss of muscle mass, and
• peripheral edema (swelling of the tissues in the legs and feet).

Though there isn't a cure, doctors can usually help treat the symptoms. Even so, some people experience very severe symptoms that can lead to disabling and life-threatening complications.

Is Chronic Motility Disorder a Disability?

Chronic motility disorder is usually considered a disability; it's when your intestines don't work properly to propel food through your digestive tract. Also called chronic intestinal pseudo-obstruction (CIPO), it's similar to what happens when you have a bowel obstruction, but with chronic motility disorder, there is no physical obstruction. The disorder causes chronic malnutrition as the intestines become unable to absorb nutrients and the body becomes intolerant to eating food due to nausea.

Chronic motility disorder can be caused by Crohn's disease, Hirschprung's disease, mitochondrial disorders, or an injury to the intestines. Symptoms include:

• abdominal pain
• abdominal distention
• constipation
• nausea and vomiting, and
• weight loss.

Is Small Bowel Mucosal Disease a Disability?

Similar to SBS in symptoms, small bowel mucosal disease usually causes disability. When the mucosa (mucous membranes) of the small intestines deteriorate and can't absorb nutrients, it can lead to abdominal pain, diarrhea, weight loss, and chronic malnutrition.

Small bowel mucosal deterioration can be caused by microvillous inclusion disease, tufting enteropathy, or untreated celiac disease. If untreated, it can lead to permanent disability.

How Can You Get Disability Benefits for Intestinal Failure?

A diagnosis of short bowel syndrome, a chronic motility disorder, or small intestine mucosal disease isn't enough to get disability benefits. But if you're experiencing moderate to severe limitations that prevent you from working for 12 months or more, and you have comprehensive medical records showing your limitations, the Social Security Administration ("Social Security") may approve you for benefits.

The two ways you can qualify for disability benefits are:

• Meeting a "listing." Social Security has a disability evaluation handbook that sets out the criteria for disability for various medical conditions. Social Security calls these rules "listings."
• Being unable to work due to your limitations. Even if you don't meet a listing, you might still be eligible for disability benefits if you can prove that you have a severe medical impairment that makes you unable to do work activities or be unable to be at an office or job site for 40 hours a week.

Meeting the Listing for Intestinal Failure

When you apply for disability benefits with a severe small intestinal condition that requires you to take food intravenously, Social Security will evaluate your condition under listing 5.07 for intestinal failure due to short bowel syndrome, chronic motility disorders, or small intestine mucosal disease.

The listing states that your medical records must show that you require daily "parenteral nutrition" via a central venous catheter, or central parenteral nutrition (CPN). CPN means that your nutrients are delivered through a thin tube called a catheter that has been inserted into a vein. As long as you're dependent on daily parenteral nutrition, you'll continue to meet the requirements of the listing.

Until October 2023, the listing also required that you have surgical resection to shorten your small intestine by more than half, but the listing no longer requires any type of resection.

Being Unable to Work Due to Intestinal Failure

Not too many people with short bowel syndrome or similar intestinal disorders meet the listing for intestinal failure, because they don't need daily CPN. Fortunately, most disability claims that are approved for benefits don't actually meet the criteria of one of the listings contained in Social Security's blue book. Instead, Social Security approves most applicants because their limitations make them unable to perform their previous jobs, and they're unable to transition into another type of work.

So if you're suffering from intestinal failure but you don't require daily parenteral nutrition, Social Security will look at what types of work-related activity you can do. Social Security will review your medical records for evidence of how your intestinal issues limit your ability to work. The claims examiner in charge of your file will then create a "residual functional capacity" (RFC) assessment for you.

Your RFC is the most intensive work you can still do (medium, light, or sedentary), despite the limitations caused by your medical condition. For example, if you have mucosal disease or a motility disorder, your doctor might limit you to standing or walking for two hours a day or lifting and carrying no more than a certain number of pounds at one time, due to fatigue and weakness. Your doctor may also require that you have ready access to restroom facilities or report that you would require extra breaks during a normal workday.

An RFC for someone suffering from short bowel syndrome might include the following limitations:

• require a 6-minute break every hour, in addition to the normally scheduled two 15-minute breaks and one 30-minute lunch break
• have immediate and unscheduled access to restroom facilities
• stoop, crouch, crawl, kneel, or bend only occasionally
• lift and carry no more than 50 pounds occasionally and 25 pounds frequently, and
• walk and stand for two hours of an eight-hour workday.

Someone with these limitations would likely be unable to do most jobs, because they wouldn't be able to perform the requirements of even sit-down work. Social Security knows that sit-down work usually requires at least some stooping and bending and doesn't allow for six-minute breaks every hour.

For more information on how the SSA decides whether your RFC prevents you from doing any jobs, see our section on disability determinations based on RFCs.

What Medical Evidence Does Social Security Need to Decide Your Claim?

Your medical records should include your doctor's treatment notes reflecting the frequency and severity of your symptoms over time. It also helps if your records include:

• a CT scan of the abdomen
• a summary of the hospitalization(s) you've had
• if you've had a surgical resection, a copy of the surgical report of intestinal resection and medical imaging taken after surgical resection that shows how much of the small intestine remains, and
• if you're dependent on parenteral nutrition, documentation of how much of your nutritional needs it supplies.

Social Security might also send you for an independent exam by one of their doctors or ask your doctor to complete a questionnaire about your limitations.

Can I Get Disability for a Small Intestines Transplant?

Yes, Social Security will automatically consider you disabled under listing 5.11, for small bowel transplantation, for one year from the date of the transplant. After 12 months of disability payments, Social Security will evaluate your condition to see if you have any residual impairments, like rejection episodes or other complications.

How Do I Apply for Social Security Disability Benefits?

An easy way to apply for Social Security disability benefits is to file your claim online at www.ssa.gov/applyfordisability. You may also file a claim over the phone by contacting Social Security at 800-772-1213, but be prepared for long wait times.

For more information, please see our article about applying for Social Security disability benefits.

_{Updated October 3, 2023}