IBD and Disability Benefits

The inflammatory bowel diseases (IBD) are incurable, chronic illnesses that include Crohn’s disease, ulcerative colitis, and indeterminate colitis. IBD affects the digestive system, causing inflammation which results in symptoms such as fatigue abdominal pain, diarrhea, lack of appetite, and in some cases, blood in the stool.

Many people who live with IBD find a treatment that helps stop the inflammation and the symptoms. However, for some, the disease can turn out to be quite severe and difficult to treat. This is especially true when there are extra-intestinal symptoms (outside the digestive tract) or they have a diagnosis of an associated condition.

These complications can limit life activities and make keeping a job difficult. In those cases, it may make sense to apply for disability benefits. There are, however, certain criteria that must be met in order to receive those benefits.

The Blue Book Listing for IBD

IBD is a condition for which people can receive Social Security benefits. The U.S. Social Security Administration (SSA) has a list of medical conditions and descriptions which guides the social security application process. This is called the Disability Evaluation Under Social Security or as it’s sometimes known, the “Blue Book.”

The Blue Book is updated on a regular basis, is quite detailed, and it contains a lot of information that is helpful to those looking to apply for benefits. Not every condition or the complications that can happen with that condition is listed in the Blue Book.

However, if a disease or condition is listed, it means that the standards for it in regards to disability have been laid out. IBD is a disease that is listed in the Blue Book. The language in the Blue Book is meant for professionals that work in the Social Security disability space, such as doctors and lawyers.

Many people will want to get some assistance, such as from a disability lawyer, when looking at the criteria laid out in the Blue Book in order to understand it better and to make a strong case when applying for disability. 

Documentation and Tests Used

IBD is listed in the digestive system section of the Blue Book. There is a list of documentation that is needed in order to be considered for disability. This includes medical records of both what a doctor says and what “appropriate medically acceptable imaging studies and reports" show.

“Appropriate” means that the test is one that is generally considered to be used for managing that disease. Some of the tests that are often used to diagnose and manage IBD that are listed include:

• Computerized tomography (CT scan)
• Magnetic resonance imaging (MRI)
• X-ray imaging 

Disability Benefits

Disability benefits are monetary payments that are given because a person is unable to earn wages at a job. They are also used to help pay for medical treatments. Qualifying for disability could be a short-term situation or it could be indefinite, depending on the reason and if it’s possible to be healthy enough to return to work.

In the case of IBD, the disease does go through periods of active disease and remission, so short-term disability is possible. However, when the reason for disability is a permanent extra-intestinal condition or as a result of surgeries (such as short bowel syndrome), the disability may be long-term or indefinite.

There is no one set monthly monetary amount that is allocated for disability. Every case will be different and will be based on that person’s earnings before applying for disability. Disability payments would continue until the recipient is able to go back to work and earn wages.

The steps for applying for disability are first to gather the necessary documents and then submit the application. After that, the Social Security office will review the application as well as work history and current work status and then pass the case to the state office of Disability Determination Services. When the decision is made, a notification will come through the mail.

Who Is Eligible to Apply for Benefits

It’s possible to apply for disability in person, online, or by phone. Applicants can call 1-800-772-1213 between 7 a.m. and 7 p.m. Monday through Friday (deaf or hard of hearing can call at TTY 1-800-325-0778). Applying can also be done in person, at a Social Security office, with an appointment.

Applying online means filling out forms, including the Adult Disability Checklist the Disability Benefit Application, and a Medical Release form. To use the online application, applicants must be:

• Over the age of 18
• Not receiving benefits on their own Social Security record
• Unable to work because of a medical condition that is expected to last either for at least 12 months or to be terminal
• Have not been denied benefits in the last 60 days

Several documents are needed to apply for disability. Some documents must be provided in the original form, such as a birth certificate, but others, such as a W-2, can be photocopies. The paperwork can be mailed in or it can be brought in person to a Social Security office.

Documents that will be needed to apply for disability include:

• Birth certificate or other proof of birth
• Proof of U.S. citizenship or lawful alien status for those not born in the United States
• U.S. military discharge paper(s) if for military service prior to 1968
• W-2 forms(s) and/or self-employment tax returns for the previous year
• Medical evidence, including medical records, doctors' reports, and recent test results
• Award letters, pay stubs, settlement agreements or other proof of any temporary or permanent workers' compensation-type benefits

Making an Appeal

If a claim is denied, there is an appeal process. It is common for a claim to be denied and to make an appeal. An appeal needs to be made in writing within 60 days of the decision.

An appeal can be for a non-medical reason (for instance, if a claim was rejected based on income) or a medical reason. If for a medical reason, there is also a process to have the reconsideration administered in a hearing by an administrative law judge. 

Surgery and IBD-Specific Considerations

One section of the Blue Book has some wording to be aware of because it is in contrast to how the medical community and gastroenterologists who specialize in IBD write about the disease.

Crohn’s Disease

In regards to Crohn’s disease, this statement is included in section 5.06 "Crohn’s disease is rarely curable and recurrence may be a lifelong problem…” Crohn’s disease is not considered curable, it is considered to be a chronic condition for most cases, and is even referred to as “destructive” by the American College of Gastroenterology (ACG).

Ulcerative Colitis

In terms of ulcerative colitis, the Blue Book contains this statement: "ulcerative colitis only affects the colon...Ulcerative colitis may be cured by total colectomy.” Calling a colectomy, which is surgery to remove the colon and rectum, a cure for ulcerative colitis is becoming less accepted in recent years.

Some gastroenterologists who specialize in IBD consider surgery a treatment for ulcerative colitis, rather than a “cure.” The ACG guidelines for ulcerative colitis refer to a subtotal or a total colectomy and placement of an ileostomy as a "surgical treatment" for acute, severe ulcerative colitis.

The guidelines also reference the other type of surgery done for ulcerative colitis, called j-pouch surgery (for which the medical term is restorative proctocolectomy with ileal pouch–anal anastomosis, or IPAA). A j-pouch is called the "surgical procedure of choice for the management of refractory UC.”

This means that it is a type of surgery that is commonly used to treat a case of ulcerative colitis that isn’t going into remission through the use of medication.

Ostomy Surgery

The Blue Book also considers ileostomy and colostomy surgery to "not preclude gainful activity if you are able to maintain adequate nutrition and function of the stoma.” Meaning that a good surgical outcome with an ostomy where everything is going well is not considered a reason for disability.

However, a note is made for those who are not able to maintain adequate nutrition. The criteria define this as having a body mass index (BMI) under 17.50. The BMI needs to be measured on two separate occasions in a six-month period at least 60 days apart.

Short Bowel Syndrome

Short bowel syndrome is a condition that occurs when significant parts of the small intestine are removed, such as is done to treat severe cases of Crohn’s disease. The wording in the Blue Book specifies half of the small intestine being removed and that a person is dependent on parenteral nutrition with the use of a central venous catheter.

Extra-Intestinal Manifestations

People who live with IBD are also at risk for developing other conditions outside of the digestive tract. These are often called extra-intestinal manifestations because they involve other parts of the body such as the joints, eyes, skin, liver, or kidneys.

The Blue Book makes a note of these types of complications and says that they will be considered if the IBD alone isn’t enough to make a case for disability. Extra-intestinal manifestations sometimes get worse when the IBD gets worse, and sometimes they don’t track with the course of the IBD at all.

Some of the extra-intestinal manifestations that are mentioned in the Blue Book include:

• Eye conditions (such as uveitis, episcleritis, or iritis)
• Liver or gallbladder conditions (such as gallstones or primary sclerosing cholangitis)
• Non-destructive inflammatory arthritis
• Skin conditions (such as erythema nodosum or pyoderma gangrenosum)
• Thromboembolic disorders (such as those which affect the arteries, veins, or lymph vessels)
• Urinary tract conditions (such as kidney stones or obstructive hydronephrosis)
• Vascular disease 

A Word From Verywell

IBD is a condition for which those who live with the disease can apply for disability benefits. The process can be challenging because it involves submitting a number of documents and then waiting for a decision. In some cases, states have a backlog of cases and it can take months or years to receive a decision. 

Some of the steps applicants can take to help their case include hiring a disability lawyer, making sure the medical team is supportive, filling out paperwork promptly, and keeping good records about the process. Making notes about symptoms, touchpoints with the medical system, medications, and extra-intestinal manifestations is important information to have.

Applying can be time-consuming and frustrating but some people with IBD are granted disability benefits. Being prepared for setbacks and the need to make an appeal is also part of the process.