crohn's disease

It may be uncomfortable to talk about Crohn’s, but your doctor needs to know about your symptoms, including the nitty-gritty about your bowel movements. When discussing the disease with your doctor, be ready to talk about the following:

  • how many bowel movements you typically have per day
  • if your stool is loose
  • if there is blood in your stool
  • the location, severity, and duration of your abdominal pain
  • how often you experience a flare-up of symptoms each month
  • if you’re experiencing any other symptoms not related to your gastrointestinal tract, including joint pain, skin issues, or eye problems
  • if you’re losing sleep or waking up frequently during the night because of urgent symptoms
  • if you have had any changes in appetite
  • if your weight has increased or decreased and by how much
  • how often you miss school or work because of your symptoms

Try to make it a habit to keep track of your symptoms and how they’re affecting your daily life. Also, mention to your doctor what you’ve been doing to help manage symptoms — including what worked and what didn’t.

Food and nutrition

Crohn’s can interfere with your body’s ability to absorb nutrients, which means you may be at a risk of malnutrition. It’s imperative that you take the time to talk about food and nutrition with your doctor. You probably already know there are some foods that affect your stomach and should be avoided. Your doctor can give you tips on what foods are highly nutritious and also safe for Crohn’s disease. At your appointment, ask about the following:

  • what foods and beverages to avoid and why
  • how to create a food diary
  • what foods are beneficial for those with Crohn’s disease
  • what to eat when your stomach is upset
  • if you should take any vitamins or supplements
  • if your doctor can recommend a registered dietician

Treatments and side effects

There’s no one-size-fits-all approach to treating Crohn’s disease. You’ll want to go over all of the available treatments with your doctor and what they recommend given your unique symptoms and medical history.

Medications for Crohn’s disease include aminosalicylates, corticosteroids, immunomodulators, antibiotics, and biologic therapies. They aim to suppress the inflammatory response caused by your immune system and to prevent complications. Each work in different ways.

Here are some things to ask your doctor about Crohn’s disease treatments:

  • if your doctor recommends a “step-up” approach (milder drugs first) or “top-down” approach (stronger drugs first)
  • why your doctor chose a particular medication
  • how long it takes to feel relief
  • what improvements you should expect
  • how often you have to take each medication
  • what the side effects are
  • whether the medication will interact with other medications
  • what over-the-counter drugs can be used to help with symptoms, like pain or diarrhea
  • when surgery is needed
  • what new treatments are in development
  • what will happen if you decide to decline treatment

Lifestyle changes

Apart from changing your diet, changes in your daily life can also help control your symptoms and prevent flare-ups. Ask your doctor if there is anything they recommend changing, such as:

  • how often you should exercise
  • what types of exercises are beneficial
  • how to reduce stress
  • if you smoke, how to quit

Possible complications

You may already be familiar with the most common symptoms of Crohn’s disease, but you need to look out for several complications as well. Apart from discussing your risk of experiencing one, ask your doctor about each of the following complications so you can better prepare for them if they should arise:

  • joint pain
  • eczema
  • malnutrition
  • intestinal ulcers
  • intestinal strictures
  • fistulas
  • fissures
  • abscesses
  • osteoporosis as a complication of chronic steroid therapy

Emergency symptoms

Crohn’s disease symptoms can be unpredictable at times. It’s important that you’re able to recognize when your symptoms mean something serious. Have your doctor review what symptoms, or side effects of your treatment, would be considered an emergency that requires immediate medical attention.

Insurance

If you’re new to a doctor’s practice, check to see that they accept your insurance. Additionally, certain treatments for Crohn’s disease are expensive. So it’s important to make sure it’s all covered so as not to cause a delay in your treatment plan. Ask about programs from pharmaceutical companies that help reduce your copays and out-of-pocket expenses for your medications.

Support groups and information

Consider asking your doctor or healthcare team for the contact information for a local support group. Support groups can be in person or online. They aren’t for everyone, but they can provide emotional support and a wealth of information about treatments, diet, and lifestyle changes.

Your doctor might also have some brochures or other printed material that you can take with you or some recommended websites. It’s important that you don’t leave your appointment feeling confused about anything.

Follow-up appointment

Last but not least, schedule your next appointment before you leave your doctor’s office. Request the following information before you go:

  • what symptoms your doctor wants you to pay attention to before your next appointment
  • what to expect for next time, including any diagnostic tests
  • if you need to do anything special to prepare for a test in your next visit
  • how to pick up any prescriptions and questions to ask the pharmacist
  • what to do in case of an emergency
  • what is the best way to contact your doctor, whether it be by email, phone, or text
  • if you had any diagnostics tests done, ask the office staff when the results will come in and whether or not they’ll call you directly to follow up

The bottom line

Your health is a priority, so you need to be comfortable working with your doctor to get the best care possible. If your doctor isn’t giving you the care, time, or information that you need, you might want to change to a new doctor. It’s perfectly normal to seek a second or third opinion — or more — until you find the right fit.