IBD: Getting the Most out of Doctors Appointments

Dealing with doctors

If you are living with Crohn’s disease or ulcerative colitis, there is a good chance you are going to have a fair amount of interaction with the health system. Especially early on during diagnosis or during a flare. This usually involves a lot of doctors appointments. Unfortunately, this is just a fact of life for many of those with IBD.

Picture this: you are sitting in a small exam room waiting to see your GI doctor. You are sick. You are stressed. A million thoughts are running through your mind.

The doctor comes in. They seem like they are in a hurry. You try to describe your symptoms and any changes in your condition. You try to describe how all of this is affecting your life…

Perhaps the doctor interrupts you as you are talking. Or you feel like they are not truly listening to you, as they stare at your chart or peck away at the keyboard. Your anxiety begins to increase. You feel rushed and start to stammer over your words. You think to yourself, “Am I explaining this the best I can?”

The doctor makes a few “Hmms”  and “Uh–huhs”. Maybe they discuss a medication adjustment. Or they recommend some more tests. Or, even worse, they don’t recommend anything at all. All of a sudden, the 15 minutes is up. “Let’s follow up in 6 weeks,” they say. And the appointment is over.

You leave feeling somewhat confused, and perhaps a little bewildered. You think to yourself, “Did the doctor actually hear me? Did I advocate for myself? What was the plan we made? The appointment went so fast…”

Many of us have been in similar situations. Depending on the demeanor of your GI, and your relationship with them, getting “what you want” out of appointments can sometimes be tough.

Through no fault of your own, dome doctors may seem somewhat dismissive or apathetic. Others may seem quiet or aloof. It happens. Sometimes, you may not feel validated or listened to. Sometimes, you may feel like all of these doctor appointments are like being on a hamster wheel – you are going nowhere.

Ensuring your voice is heard

Fortunately, you have the power to change this! Mastering the art of self-advocacy during doctor appointments is a crucial tool in your IBD management toolkit. It’s about taking control of your health journey.

The following simple recommendations can help you to maximize the time spent with your doctor, and ensure that you leave the appointment feeling confident that your needs are being addressed.

1. Prepare

Get ready! Before the appointment, spend some time jotting down any symptoms, questions, or concerns you have. Bring this list with you, ensuring you can refer to it during the discussion. Read from it directly if needed.

2. Bring a list of current medications

Make sure this includes any over-the-counter supplements. Also note any changes in medications or dosages.

3. Be honest

Strive to be as transparent as possible with your doctor about how you are feeling and how your illness is influencing your daily life. Don’t overstate, but don’t downplay things either. Be as vivid and detailed as you can. It may be uncomfortable to speak so frankly, but know that this is nothing your doctor hasn’t heard before.

4. Ask questions

During the appointment, ask questions to clarify any medical jargon or treatment options you may not fully understand.

5. Take notes!

Bring a pen and notepad to quickly scribble down any key information discussed. Even better, ask the doctor if they are ok with you audio-recording your discussion on your phone.

6. Bring a support person

If you are comfortable, consider bringing a trusted friend or family member to the appointment for moral support and to help remember important information. Two sets of ears are always better than one!

7. Discuss treatment goals

Work with your doctor to create a clear plan for managing your IBD and any other co-occurring conditions. Ask questions like: “What is my treatment plan?”, “What is the timeline?” and “What sort of improvements can I expect?”

8. Never be afraid to discuss mental health

Your mental health is just as important as your physical health. Even simply asking something like, “I’m interested in accessing mental health supports…” or saying, “I’ve been feeling _____ lately; what can I do to be proactive about my mental health?” If your doctor cannot help you in this area, they will refer you to someone who can.  

Final thoughts

Lastly, if you find that your doctor is not being forthcoming with recommendations and advice, consider asking questions like “If you were in my shoes, what sort of things would you be doing? What steps would you take” (e.g., medications, self-care, lifestyle changes, and other treatments, etc.)

Those 10-15 minutes (hopefully more) spent with your Gastroenterologist are crucial. Try to remember that this is YOUR time.

Come prepared. Arrive early. Take a minute or two beforehand to scan your notes and do a few deep breaths. During the appointment, speak up for yourself. Clarify things you don’t understand. Don’t let yourself be rushed.

By actively engaging with your doctor (and the rest of your healthcare team) and approaching each doctor appointment with purpose, you can take charge of your care and work toward a healthier, more informed future. Remember, YOU are your best advocate in your ongoing healing journey with IBD.

As always, you got this!