What Should I Ask OF My Care Team
Last updated: July 2020
Diagnosis of IBD can be incredibly difficult. Without an education of more than basic Human Anatomy & Physiology in most college courses, many people don't know how detailed the human digestive tract really is. When first researching IBD, you'll quickly realize how confusing some articles can be, what false information (and false hope) people want to feed you. So, it can be confusing what you even want to ask on your next few visits with your GI/care team.
Here are some helpful hints:
Ask where your disease is located and has been active in the past.
If there is active inflammation, ask where that location is and what can be done about it. Ask what may happen if you decide to not go through with treatment - this is important to hear from a medical expert on IBD, as withholding treatment may permanently affect your GI tract, meaning said damage can be irreversible.
The first few years of my diagnosis, I was thrown back from one diagnosis to another - 2 doctors even went as far as to mistakenly say I had both CD and UC, which is physically impossible. Because of the conflicting answers I got, I began a journey of trying to educate myself, leading to what I would soon acknowledge as advocacy.
Ask your care team to make a separate appointment with you when things with your disease change - good or bad
If they have anatomy models, ask them to show you where things are located according to your case and ask them politely to be thorough. When they know how seriously you take this information and how invested in educating yourself with the correct answers, they will likely take the time to educate you and provide you with some resources to take home.
- Where is my disease located?
- What are the risks of my disease going untreated?
- What are potential side-effects to my new prescribed treatment?
- Where has my disease been seen since my last scope & since my very first scope? (How has my IBD progressed Has it progressed?
It's not likely your GI or Nurse will necessarily refer you to a certain online support group, such as those on Facebook, but seriously consider what they do recommend. When you want answers, you want them to be as correct as possible and understand the facts in a simple way that doesn't confuse you. Dealing with the GI tract can be completely overwhelming, based on the number of organs it can affect.
Ask your care team if there are support groups in your area.
The more you get to know this disease, the more you will see how different everyone's IBD truly is. IBD is like a fingerprint - each is unique to the person and not all symptoms, complications and surgeries are the same. Not into support groups? Ask your GI or your Nurse if they know of any different kinds of support that may work better for you - maybe they will mention a place to go for information. Maybe they will know of a certain advocate in your area you can talk with and help you get you to where you need to be in terms of advocating for yourself and getting to know your body. Often times, when talking to someone else with IBD, they will give you a few ideas to ask your care team when you see them next!
Does living with IBD impact you financially?