Questions Worth Asking Your Care Team

Living with Crohn’s or ulcerative colitis means a lot of conversations with your care team, often short ones. It’s easy to walk out and realize you forgot the thing you most wanted to ask, or that you said “it’s been okay, I think” when it really hasn’t.

You don’t need medical knowledge to take part in those conversations. You know your days better than anyone. This guide is about describing them clearly and asking good questions, so you understand what’s going on and can decide things together.

Describe the last few weeks with numbers

Adjectives are hard to act on. “Pretty bad” means different things to different people. Numbers and dates are clearer:

• How many BMs a day, on average, and the most in one day.
• Days with blood, and roughly how much.
• Days with urgency, and whether you’ve had accidents or near misses.
• Pain, on a simple scale.
• Nights you were woken up.
• What’s changed, compared with the weeks before.
• What else was going on: stress, travel, being unwell, changes in eating.

Compare:

“It’s been rough lately.”

with:

“Over the last three weeks I’ve averaged four BMs a day, up from two. Eight days had a little blood, and I’ve had urgency most mornings.”

The second takes ten seconds to say and gives your care team far more to work with. It also helps you, because you’re not trying to remember on the spot.

Write your questions down as they come up

Questions tend to come at 2 a.m., not when someone asks “anything else?”. Keep a running list on your phone, and add to it whenever something comes up. Then pick your top two or three, so the most important ones get asked first.

Questions worth asking

You don’t need to ask all of these. Pick the ones that matter to you.

About what’s going on

• What do you think is happening right now?
• Is this something you’d expect with my condition, or something new?
• Is there a test that would tell us more? What would it show?

About options

• What are my options, and what do you recommend? Why that one?
• What are the trade-offs: side effects, time, cost?
• How long before we’d expect to know whether it’s working?
• What happens if I’d rather wait or try something else first?

About daily life

• Is there anything about food, stress or routine you’d suggest looking at?
• Would it help to see a dietitian who knows IBD?
• Is there anything you’d like me to keep track of?

About what to watch for

• What should I watch for over the next few weeks?
• Which changes mean I should get in touch, and how quickly?
• Who do I contact if something changes, and how?

To make sure you understood

• Can you explain that another way?
• Can I repeat back what I understood, to check I’ve got it right?
• Where can I read more about this?

Listen, ask, then decide together

Your care team has the medical knowledge. You have the day-to-day picture. Good decisions use both. It’s fine to ask why, to ask for time to think, or to ask for a second explanation. Asking questions is part of taking care of yourself.

After the conversation

Write down what was decided, what you’re watching for, and when to get in touch, while it’s fresh. If you were given something to try, note when you started, so you can look back on how things changed.

Bringing family or a friend

Some people bring someone along, or share a summary with a partner or friend afterwards. A second pair of ears helps you remember what was said, and makes it easier to talk about at home.

How Flarely helps

Flarely keeps the record, so the numbers are there when you need them. A BM is three taps, meals are a photo, and stress is one tap. The Summary tab shows your days side by side over 7, 30 or 90 days, and Flarely can make a 30-day summary PDF in one tap that you can share with your care team or anyone you trust.

There’s a “Questions I want to ask” note in the Reports tab and in your 14-day summary, so you can jot questions down as they come up. The 14-day plan ends with your own summary on day 13: what you remembered next to what you actually logged, plus your own takeaways.

For what to log in the first place, see What to Log Each Day With IBD and the Bristol Stool Chart for IBD.

Frequently asked questions

How do I describe my IBD symptoms clearly?

Use numbers and dates instead of adjectives: how many BMs a day, how many days had blood or urgency, and whether that’s better, worse or the same as before.

What questions should I ask my care team?

Ask what they think is going on, what the options are and why, what to watch for, and when to get in touch. If something isn’t clear, ask them to explain it another way.

Is it okay to bring my own notes or a summary?

Yes. A short summary plus a list of questions makes the conversation easier for most people.

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Flarely is for your own wellbeing. This guide isn’t medical advice. For medical questions, talk with your care team.