By Samantha Rzany
When I was a diagnosed with ulcerative colitis, I was in college 4/5 hours away from home. While my parents were able to drive out for my initial colonoscopy and the important follow up appointments, a majority of my ER and doctor visits I had to do alone. It is always nice to have a friend or family member go with you to appointments as a second set of ears. You often are tired or may not feel well, and it is easy to miss things the doctor may be saying.
Because of having to do a lot of appointments and ER visits alone, I have come to find some very helpful things in preparing for and going to a doctor visit by myself.
I have found that I am often on a lot of medications. And I have taken many, many more in the past. It can be very hard to remember all the medication names and dosages, as well as who prescribed them and what for. Every time I go to get an infusion, I have to provide an updated list of medications. Each new doctor I visit, I have to give a full list of current and past medications. Every ER visit, they ask what I am on and what I have been on previously. In addition to the numerous different medications, I also have quite a few doctors for various things. I also have all the doctors I had seen back in Indiana where I was initially diagnosed. So in order to get any medical records, I have to be able to quickly provide those doctors’ names and numbers.
One thing I have found to be very helpful to keep track of all of this information is an app called MediSafe. It is on my phone and allows me to put in all current and past medications, what dosage and how often I take those medications, and when I started/stopped them. It also allows me to check any drug interactions with current meds and other future ones I may be prescribed. I can also input all of my doctors and their information, as well as upcoming appointments. This app helps me keep all my information in one spot where I can easily access it when I need to. I definitely recommend finding some kind of app similar to this where you have all your information easily accessible whenever you need it.
Another thing I have found is that I often end up having to get multiple kinds of specialists. I get prescribed medication A to treat my ulcerative colitis. That causes certain side effects. I am then told to see a specialist, who prescribes medication B. But mediation B causes side effects too. So then I have to take medication C to treat those side effects. But mediation C can cause certain issues so I have to take supplements D, E, and F to keep everything balanced. And suddenly I am on 6 medications and seeing 3 different specialists because of mediation A to treat my initial problem.
With all these new specialists and medications, I am often going to new doctors and explaining my symptoms and issues I am having. Especially due to the recent COVID-19 pandemic, most doctors offices are only allowing the patients back into the room. That means I have to have all the questions to ask the doctor and pay very close attention to everything they are saying in case I have follow up questions. I have found it very helpful to have a prepared list of questions ready to go for any specialist I see. I make sure to get a clear and concise list of symptoms ready ahead of time, as well as when they started and if there were any changes in medications or anything else around that time. Below are the typical questions I ask at nearly every new appointment, especially when discussing new medications.
Will this medication interact with any of the medications I am currently on? (List all medications, including ones not for IBD)
What are the main side effects of this medication?
How is this medication typically tolerated in patients with IBD?
How long will I be on this medication?
What are some severe side effects to look out for?
How quickly should I notice a change?
Are there other options of medications to treat this issue in case I do not tolerate this medication well?
What time of day is best to take this medication and should I take it on a full or empty stomach?
Is there anything else I need to know about this medication?
Obviously, these questions may not include everything you need to know and you may not be able to ask all of these. But these are some of the things I try to ask either at my appointment or in follow up messages to the doctor. Anytime I see a doctor that is not my GI if they prescribe me a new medication, I send a message to my GI to clear that with him. Since my primary condition is my IBD, I want to make sure that nothing I take to treat other conditions will have a major impact on that. My GI has been really good at getting back to me with which medications would be find to take and which may cause problems for me.
Navigating new doctors, medications, and conditions on your own can be stressful and intimidating. But preparing your questions and information ahead of time can make it much easier to tackle. If you have questions or need help to try to get your information together, please reach out to me! I’d love to help! If there is anything else you have found helpful in navigating appointments on your own, let us know!!