Helpful Hints for the Newly Diagnosed - Part 1
Last updated: June 2021
These are some helpful hints that I've found based on my experience for the person who's been recently diagnosed with IBD. They may even be helpful for those who weren't recently diagnosed!
Set aside time for insurance paperwork with IBD
Each year around the first week of January, I set aside working hours to prepare insurance paperwork and authorizations. Every single year since I was 16, I’ve dealt with specialty pharmacies.
Any patient who just read “specialty pharmacy” probably just cringed a little. It’s time-consuming, there is a LOT of holding and sometimes, you have to re-connect multiple times to get through to the Customer Service representative.
Give yourself enough time to use it efficiently, rather than waste your lunch hour (if you even get one) just to wait on hold.
If you’re able to get these forms printed for each of your scripts that you know will need prior authorizations, especially when changing insurance companies, it’s a good idea to fill out as much as you can. This way, when you switch providers or insurance, you have your paperwork quickly accessible for your appointments when you see your provider.
Are you newly diagnosed or do you have any advice for someone newly diagnosed?
Invest in a medication journal and some good pens
Through the years, I’ve been on a multitude of combinations in drug therapies. It’s sometimes hard to tell which drug may or may not be giving me side effects. When starting a new med, I always keep track of the day I started it, just in case it interferes with other medications. Many specialists will have you keep a symptom journal for efficacy reasons to see if that medication is worth pursuing.
Keep medical products up to date and keep extras on hand
When I was diagnosed, I quickly learned what I should and should not take when living with IBD. Aspirins and other things can affect me in many different ways.
I keep Benadryl stocked in my cabinet (that’s not expired). I also keep extra vitamin C tablets and teas around the house, in the event of a sudden cold or flu, so I won’t need to go to the store and infect others. Honey for a sore throat & Chloraseptic spray has helped during very random times (after sedation and scopes, after they’ve intubated me).
Consider a pill organizer
It takes a long time for me to gather my meds each week. I've tried to plan ahead and set a certain day penciled in my planner to remember to re-stock each of the days in my 7-day pill box. I've actually been thinking about investing in another since it's such a daunting task.
I remember when I was diagnosed, within the first two years, I was on over 50 pills a day (in college, nonetheless). Consider getting yourself a two week or month pill organizer so you feel prepared and not stressed out when you go to take your pills and realize you're empty.
Keep your “safe foods” stocked
Keep frozen bone broth (or vegan broth) stocked. Everyone has their safe foods. When you’re first diagnosed (and even later in your diagnosis, things can change at the drop of a hat what you can and cannot ingest. I prefer to stick to the BRAT plan (Bananas, Rice, Applesauce & Toast), along with a few other “safe foods.”
Having specific safe foods set aside in your cabinet can spare you stress when you need the extra energy.
Let’s be honest, the last thing you want to do when you’re in a flare or have a “normal person sickness” is to have to rush down to the drug store and buy overpriced items that you should have picked up ahead of time.
Because we never know when our next flares will be, all we can do is choose to be well-nourished, well-educated & well-prepared!
Read part 2!
What has been the most helpful for managing IBD symptoms?