Getting Diagnosed With Short Bowel Syndrome: What to Expect

There is no single test for short bowel syndrome (SBS). The diagnosis comes from your medical history, a physical exam, and a set of tests read together.¹

Knowing what the diagnosis process looks like can make it easier to take the first steps toward the answers you need.

Why a small bowel syndrome diagnosis can take time

Doctors start by asking about your medical history and your symptoms, with particular attention to any past surgery to remove part of the small intestine.¹

That is also why the diagnosis is not always immediate. In the weeks after surgery, the intestine is still adapting, and the symptoms look a lot like the condition that led to the operation in the first place.²

If your symptoms have not gone away, it’s important to let your doctor know.

What your doctor will ask you

You can expect questions about your health that include:^1,3

• Your surgical history: which operations you have had, and when
• How much small intestine was removed, and which part of it
• Whether you have an ostomy, and how it is functioning
• When your symptoms started, especially relative to surgery

What happens during the physical exam

During the exam, your doctor looks for the visible signs that your nutrient absorption has been affected. That means checking for signs of dehydration, for weight loss, for signs of vitamin and mineral deficiencies, and for other complications.¹

Tests your doctor may order

No one test confirms short bowel syndrome, so these are used together:^1,4

• Blood tests: to check your vitamin and mineral levels, look for signs of infection, and find complications
• Stool tests: to measure how much nutrition you are absorbing and how well the small intestine is working
• X-rays: pictures of the inside of the body, made with a small amount of radiation
• Upper GI series: X-rays taken with a chalky liquid called barium to view your upper GI tract
• CT scan: X-rays combined with computer technology to create detailed images
• Imaging: shows your doctor the small intestine and rules out a blockage or another condition that could explain the same symptoms^1,4

Who is on a small bowel syndrome care team

Short bowel syndrome is managed by a team, not by one doctor. Depending on your situation, that team can include:³

• A doctor with gastrointestinal expertise – usually the person leading the team
• A gastrointestinal surgeon
• A nurse coordinator – for day-to-day management, and often your most useful contact
• A nutritionist or registered dietitian – to build a plan around what your intestine can absorb
• A transplant surgeon – in some cases, to expand treatment options.
• A psychologist or social worker - to help with the mental and emotional challenges of the condition

What happens after the diagnosis

Once short bowel syndrome is diagnosed, a plan is built around the amount of intestine you have left and how well it is working.⁵

This usually starts with nutrition support, which can mean nutrition through a vein, nutrition through a feeding tube, eating and drinking by mouth, or a combination. Fluids and electrolytes are managed alongside it, and your team monitors for the complications that come with poor absorption.⁵

Expect the plan to change. The intestine can keep adapting for about 2 years in adults, and treatment is adjusted as that happens.⁵

What to bring to your small bowel syndrome appointment

Your doctor will want to know how much small intestine was removed and which part. That information lives in your surgical records, so bring them if you have them, or ask for copies ahead of time.¹

It also helps to bring notes on when your symptoms started and how they have changed, and on what you can and cannot eat and drink.^1,3

Talk to your doctor

Getting a name for what is happening is a real step forward, even when the name is unwelcome. Bring your questions, ask which part of your intestine you still have, and ask what that means for you. You do not have to work any of this out on your own.