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First up: symptoms.
Are you tracking?
When you have Crohn’s disease or ulcerative colitis (UC), recurring symptoms can make it difficult to focus on small details or changes. But those are the things that your gastroenterologist needs to know. An increase in symptoms could help them decide that it’s time to adjust your treatment plan. A new symptom could help them catch and address an issue early.
Make it a habit to track symptoms in a way that works for you. You can track them at the end of the day, or as they happen. There’s really no wrong way to do it.
What to ask your gastroenterologist
Treatment expectations?
Write them down.
Your gastroenterologist may know a lot about treating your disease, but only you know how your body feels. That’s where goals come in handy—they give you and your doctor a shared measure for success. Goals can be focused on symptoms (“I want relief from abdominal pain”), monitoring, (“How do we know if my disease is under control?”), or life activities (“I want to be able to work full time”), but they all need to focus on a treatment plan that works for you.
To be heard,
say it out loud
It can be difficult to talk about how your disease is impacting you and your life. Quite frankly, it can feel overwhelming.
If the idea of what to say at an appointment stirs anxiety, try this: practice what you would want to say at the appointment...but say it out loud. Do it with a trusted friend who knows what you’re going through. Or, do it in front of a mirror when no one else is around. Either way, the practice of vocalizing your experience, frustrations, or needs can help you understand them and get you feeling comfortable expressing them.
Being comfortable talking with your doctor is only one part of the process to making sure an appointment goes smoothly. Working with your doctor and team is a partnership. If you’re not getting the support you need, or feel the current team is not a good fit, consider switching to another doctor. It’s your right to seek another opinion. Once you find the right gastroenterologist for you, you’ll both make a good team for working towards your treatment goals.
Here are ways to get even more prepared:
Understand the lingo
Doctors are experts in their field, but with that expertise comes words and phrases that the everyday person doesn’t know or use. If your gastroenterologist says something you don’t understand, ask them to explain what it means.
Review what’s new
Make sure to write down any symptoms you may have experienced since your last visit. Even if you don’t think it’s related to your Crohn’s or UC, it could be an extraintestinal manifestation (EIM), which could require attention from other specialists.
Info at the ready
Have things like medical records or symptom logs with you. Print them out or have electronic copies available on a phone or tablet.
Come with questions
Rather than thinking of questions during your appointment, be proactive and think about what you’d like to ask beforehand. If you want a little help, try a few of these:
- What could be causing my symptoms?
- What kind of tests do I need? And how do I prep for them?
- What treatment plan would you recommend for me?
- How do I know if my treatment plan is working?
- How and when do we monitor my disease even if symptoms have improved?
- If it doesn’t work, what’s next?
One more thing...
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