Diagnosing IBD – what to expect

In the beginning

The road to diagnosing IBD is often a frustrating process – overwhelming, scary, and embarrassing. Your whole world can feel like it’s being turned upside down.

IBD can be a pain in the butt to diagnose (sorry, bad pun). Symptoms vary person-to-person. You may experience varying degrees of diarrhea, nausea, cramping, bloating, or fatigue.

Initially, many chalk it up to nothing. IBD can be mistaken for a laundry list of different issues, such as GI infections, celiac disease, parasites, diverticulitis, hemorrhoids, or irritable bowel syndrome (IBS).

In the beginning, many will just shrug it off. Especially if symptoms are minor.

Other symptoms are harder to ignore though: blood in your stool, weight loss, severe abdominal pain, vomiting, fever. These usually start ringing alarm bells in your head. You begin to ask “what the heck is going on with me?” and “is this serious?”

My experience

For me, after around 6 months of experiencing increasingly annoying “stomach issues”, my symptoms eventually progressed to having noticeable amounts of blood in my stool. When this did not go away, I became somewhat freaked out and promptly scheduled a physician appointment.

The doctor visit was fairly routine. I explained my symptoms and how long this had been going on. She asked me about diet, family history, stress, and pre-existing conditions.

“The blood could be from internal hemorrhoids,” the doctor said. “Or it could be something else. Just to be safe, I’m going to order some blood tests…and a colonoscopy”.

And that is how my diagnostic workup started. I was glad she didn’t simply write me a prescription for antibiotics and send me out the door. She connected me with a gastroenterologist.

I still wasn’t very reassured, but at least I had a plan now. As far as I can remember though, there was no mention of Crohn’s, colitis, or otherwise. I was more worried about things like cancer. IBD wasn’t really on my radar yet. Oh to be blissfully unaware…

The workup

Health providers first need to rule out other causes of your symptoms before making a diagnosis of Crohn’s or ulcerative colitis. Unfortunately, there is no single test that can be used to diagnose IBD.

A doctor (usually a gastroenterologist) must use a combination of procedures to specifically test for the signs of IBD and confirm a diagnosis.

Blood tests

As a first step, you will almost surely have at least one blood test (probably more).

Your doctor will likely order:

• White blood cell (WBC) count – elevated WBCs are often a sign that infection and/or inflammation is occurring somewhere in the body
• Red blood cells (RBCs), hemoglobin, hematocrit – abnormal values may indicate low blood iron (anemia), internal bleeding, or malnutrition
• Platelets – high platelet count may indicate internal bleeding or ulceration.
• Folic acid, vitamin B12, iron/ferritin – these are indicators of nutritional status and nutrient absorption
• C-reactive protein (CRP) – elevated levels of CRP show that inflammation is occurring somewhere in the body (but, unfortunately, not “where” the inflammation is located)
• Liver function tests (ALT/AST, GGT) and kidney function tests (GFR)

Depending on your symptoms and history, additional types of blood tests may be ordered.

Stool tests

Along with the blood tests, your doctor will have you submit a stool sample for testing.

The two most common tests are for bacteria (such as C. Difficile) and a protein called Fecal Calprotectin (it is found in white blood cells). When white blood cells in the GI tract fight inflammation, they release calprotectin. Higher levels of calprotectin in the stool often correspond with higher levels of inflammation in your intestine.

Endoscopic procedures

In an endoscopic test, a flexible scope is used to examine the digestive tract. The two main types, upper endoscopy and colonoscopy, are considered the “gold standard” in IBD testing. A diagnosis of Crohn’s or ulcerative colitis cannot be made without completing an endoscopic examination.

Upper Endoscopy

For an upper endoscopy, you will be first sedated (using IV sedation). To prepare for this test, you will likely not be able to eat or drink anything for 8 hours prior. The physician will feed an endoscope through the mouth and into the upper gut (stomach, esophagus) and small intestine. From there, they can then watch a camera on a nearby monitor as the scope travels and can take pictures and tissue samples for further testing.

This upper endoscope test sounds awful, but in my experience, it’s not that bad. I just remember going to sleep and then waking up after the procedure. Maybe my throat felt a little scratchy afterward.

Colonoscopy

For a colonoscopy, an endoscope is used to go backward from the rectum through the large intestine and into the last part of the small intestine. 

Similar to the upper endoscopy, you will be sedated, and the gastroenterologist watches the endoscope camera on a monitor as it moves through the rectum and colon. They take pictures of any problematic areas of inflammation or ulceration, and use a tool on the end of the scope to take fluid or tissue samples to send for laboratory testing.

Colonoscopy prep and procedure

For me, the worst part of having a colonoscopy done was always the prep. The prep sucks.

In the days leading up to the procedure, they will get you to eat a special low-fiber diet, with no grains, nuts, seeds, dried fruit, or raw fruits and vegetables. You cannot eat solid foods for 24h prior to the colonoscopy, but you can have clear liquids like broth, Jell-O, popsicles, black coffee or tea, clear juice (apple), or clear sports drinks. Make sure you avoid anything with red or blue food coloring in it.

The day (or evening) before the colonoscopy, you will need to drink an ungodly amount of foul-tasting prep liquid. It usually comes in a powder (polyethylene-glycol electrolyte solution) that you mix up in around 4L of water. You drink half the night before, and the other half early in the morning of the procedure. This liquid triggers the bowel to start clearing contents and will cause diarrhea.

Expect to spend a fair amount of time on the toilet, so don’t stray far. Make sure you stay hydrated and keep drinking lots of liquids.

The colonoscopy procedure itself can be somewhat uncomfortable, but it’s usually not too bad with sedation. You will probably feel a little loopy afterward, and a friend or family member will have to come to pick you up.

Sometime after, a pathologist will then look at the appearance of the collected tissue cells with a microscope. Here, they will be able to determine the presence of abnormal cells, which may indicate IBD (“histologic confirmation”)

Additional tests for diagnosing IBD

On top of all the tests listed above, there is a good chance that your physician will order some type of diagnostic imaging procedure. This could be in the form of a CT scan, MRI, or ultrasound.

They may also order urine tests, or food allergy/sensitivity tests (such as for celiac/gluten allergy, or others).

Putting it all together

Once your GI physician has all the “puzzle pieces”, they will be able to put all the information together to make a diagnosis.

For example, in a colonoscopy, ulcerative colitis usually presents as continuous inflammation, which is limited to just the colon. If there are patchy areas of healthy tissue, followed by areas of inflammation (“skip lesions”), and/or inflammation in the small intestine, then a diagnosis would lean more toward Crohn’s disease.

The physician will then schedule an appointment with you to discuss the diagnosis. If IBD is confirmed, they will also explain the severity and extent of the inflammation, as well as other considerations like prognosis, treatment plan, etc.

Pro-tip: bring a support person with you to this appointment, as the onslaught of information given by the doctor may be overwhelming. There may be things you miss or questions you forget to ask. This 100% happened to me. I learned that, in those situations, two sets of ears are often better than one.

What next?

After all of this comes the road to feeling better – treatment, hopefully leading to remission. Receiving a diagnosis for any illness feels surreal at first…you will likely go through a lot of emotions. This is ok! As always – be gentle with yourself, talk and share with people you trust, take care of your mental health, remember to breathe!

After going through all the diagnostic tests, you have taken a big step toward wellness. Be proud and pat yourself on the back.

You don’t always have to feel strong, or happy, or in control…you just need to tell yourself that “I got this” and “things will get better”. Then take it one day at a time.