My IBD Glossary for the Newly Diagnosed

It is a pretty scary time when you start having symptoms that you cannot figure out or understand. It's sometimes even scarier having to go see a doctor, or even worse, straight to the emergency department at the hospital.

Even in my 35 years of Crohn's, I'm still learning new words when it comes to this disease. Many doctors start listing off all this information that you're supposed to figure out and many of us do not ask the question, "Can you repeat that in English please?"

So, I have tried to put together a list of terms that I think can be helpful – lingo I've put into my own words, hopefully in a way everyone can understand. Maybe you can add some of your own! I also think we need to feel empowered to stop and ask our doctor questions. If you're feeling confused, you're definitely not alone (we've all been there), and you deserve to fully understand your medical care.

Crohn's and colitis lingo: explained by a patient

Painful things

Abscess: a collection of pus, usually due to the presence of bacteria. In other words, a very painful hard ball-like area of skin full of pus.

Fissure: very painful crack or split in the skin near the anus.

Fistula: an abnormal connection between an organ and another structure. Fistulas can form between 2 pieces of bowel or between bowel and skin, usually from the rectum to the perianal area (the area around the anus).

Obstruction: narrowing or blockage of the bowel. Has happened many times to me, and these are quite common. (And painful.) Watch what you eat as foods can sometimes cause an obstruction.

Perianal: around the anus. Perianal disease is painful from abscesses and fissures.

Complications

Anemia: level of healthy red blood cells in the body is too low. This is usually shown by you becoming very tired, weak, shortness of breath, dizzy, etc. You can be anemic from lack of iron (from blood loss) or B12.

Arthralgia:pain in the joints, usually knees, ankles, elbows, wrists, and hips because of the inflammation with regard to the Crohn's or UC.

Medications

5-ASA (5-aminosalicylic acid): anti-inflammatory drugs. Usually what we start with for treatment, like mesalamine. These help bring down the intestinal inflammation.

Azathioprine: a drug that suppresses the immune system, or an "immunosuppressant."

Biologics/biosimilars: medicine made from proteins and other substances produced by the body. A biosimilar works in the same way as a biologic, but it's cheaper. These drugs have been a Godsend to thousands of IBD patients like myself. They can be taken either by infusion or subcutaneous injection. Biologics can block substances that play a role in inflammation, such as proteins.

Enema: warm liquid which is administered into the bowel via the anus to clear the bowel completely.

Steroids: powerful drugs that depress the immune system. Prednisone is a commonly prescribed steroid. It can have many different side effects, though some people never have any, it varies.

Gettings tests done

Barium: a chalk-like liquid which shows up on an x-ray. Also known to Crohn's and colitis patients as "the Devil's water." It can be taken orally or in an enema. Either way, it's disgusting and made me vomit many times.

Colonoscopy: exam of the colon using a long, flexible tube that's inserted into the rectum. And thank goodness for sedation. You cannot be shy with this exam but it is one of the best ways to determine levels of the disease. The bowel prep is a pain in the butt and not tasty but necessary unless you want to do it again.

C-reactive protein (CRP): a substance made by the liver when there is an inflammatory response in the body. With IBD, CRP levels in the blood are raised – a simple way of detecting gut inflammation.

CT scan: computed tomography (CT) scan uses X-rays and a computer to create detailed images of the inside of the body. Sometimes referred to as CAT scans.

Fecal calprotectin: is a substance that is released into the intestines in excess when there is any inflammation there. It can be detected in stool tests and may mean a person has an inflammatory bowel disease like Crohn's disease or ulcerative colitis.

MRI: magnetic resonance imaging is a type of scan that uses strong magnetic fields and radio waves to produce detailed images of the inside of the body. Hopefully you are not claustrophobic. This is a long appointment.

Surgeries and procedures

Colectomy: removing part of the large bowel. A total colectomy is removal of entire bowel. Proctocolectomy means that the rectum is included.

Ileostomy: removal of the whole of the colon. A piece of small bowel is brought out onto the surface of the abdomen as a stoma (artificial opening) and a bag is worn over the stoma to collect body waste. I have this and it has been the best thing I have done. I have been in remission since 2020.

Nasogastric tube: fine plastic tube passed into the stomach via the nose. Can be used for nutrition or to help decompress the stomach. Also called an NG tube.

Resection: a surgery where an area of diseased bowel is removed and the 2 healthier ends of the bowel are joined.

Stoma: artificial opening so that the bowel contents can be discharged into a bag applied to the skin.

Nutrition

Elemental diet: specially formulated liquid meal in a completely digestible form, rich in basic nutrients, taken either by mouth or through a nasogastric tube.

Total parenteral nutrition (TPN): given intravenously, often by a catheter inserted surgically into a large vein in the body. In my case, under my arm. You do not feel it but it is a large "performance" to get it done, but worth it.

Who treats IBD?

Gastroenterologist: a doctor who treats gastrological disorders like Crohn's and ulcerative colitis. You will get to know this doctor very well. Come to appointments with notes you have taken between appointments.

Is there a cure?

Chronic: it means lifelong. There is currently no cure for IBD.

Remission: feeling "better." Usually meaning there is no evidence of disease activity. But defining remission can be difficult, as often symptoms still exist.

What exactly am I diagnosed with?

Crohn's disease: a chronic inflammatory disease with unknown cause that can affect any part of the digestive tract from the mouth to the anus. It often affects the terminal ileum (the last part of the small intestine) and the colon. Crohn's is one of the main forms of inflammatory bowel disease (IBD). Unfortunately, it is chronic and lifelong.

Ulcerative colitis: a chronic inflammatory disease affecting only the colon.

Colitis: inflammation of the colon.

Other common terms with Crohn's and UC

These are only just a few that I remember but I know there are hundreds of others. If you know some more, please add them in the comments.

Getting diagnosed is a scary and worrying time, but you will get through it. And there's a community of people here to support you.