Carcinoid Syndrome Diarrhea

Carcinoid Syndrome Diarrhea

About 8 out of 10 people being treated for Carcinoid Syndrome experience chronic diarrhea. In fact, it’s one of the main signs you may have Carcinoid Syndrome.

What causes Carcinoid Syndrome diarrhea?

When you have Carcinoid Syndrome, your body has tumors called NETs that produce large amounts of a hormone called serotonin. The excessive amount of serotonin increases the level of fluid in the gut. It also increases the function of your gut up to 6 times its normal speed. This can cause diarrhea anywhere from 1 to around 30 times per day, and be accompanied by pain or cramps as well.

Other types of diarrhea can be caused by:

  • An overgrowth of bacteria in the gastrointestinal (GI) tract
  • Short bowel syndrome caused by either:
    • surgery, which reduces the length of the small intestine
    • the inability of the small intestine to absorb nutrients due to disease progression
  • The pancreas, which aids in digestion and may undergo reduction in activity. This can be caused by the use of somatostatin analog (SSA) injections

How does Carcinoid Syndrome diarrhea affect people who have it?

Carcinoid syndrome diarrhea can cause depression, anxiety, fatigue, sleep disturbances, and body pain
  • Depression
  • Anxiety
  • Fatigue
  • Sleep disturbance
  • Bodily pain

Diarrhea can occur anytime, so it can interrupt sleep and other activities. A lack of sleep can lead to fatigue and depression. People with Carcinoid Syndrome and severe diarrhea may also experience pain.

Diarrhea types

There are 4 types or grades of Carcinoid Syndrome diarrhea that healthcare professionals use to describe symptoms. However, these grades only focus on the number of bowel movements per day. That's why it is important to talk to your doctor about the effect diarrhea has on your daily living.

Four grades of Carcinoid Syndrome diarrhea

Mild diarrhea, or Grade 1: 2 to 3 stools above normal per day

Mild to moderate, or Grade 2: 4 to 6 stools above normal per day

Moderate severe to severe, or Grade 3: 7 to 9 stools above normal, with possible severe cramps and incontinence

Severe, or Grade 4: 10 or more stools above normal; possibly bloody diarrhea

I’ve missed out on so many events from Carcinoid Syndrome diarrhea before I knew it could be treated.
– Person with Carcinoid Syndrome

Managing Carcinoid Syndrome Diarrhea

Watch a video of Dr. David Metz explaining the causes of Carcinoid Syndrome diarrhea and ways to better manage the condition.

Your healthcare team can help

Diarrhea is an indication of Carcinoid Syndrome, but it could also be caused by something else. Whatever is causing your symptoms, you should know there are treatment options. While it may feel embarrassing to discuss the topic of diarrhea, your doctor will be happy to help.

How to treat Carcinoid Syndrome diarrhea

There are a number of treatment options for Carcinoid Syndrome diarrhea. Please visit the Carcinoid Syndrome Treatment section, and discuss treatment options with your doctor.