Staying Organized With an IBD Notebook

When I started experiencing daily symptoms of Crohn’s disease in 2009, I had no idea they would become part of my forever. I was naive and unorganized, and I had no idea how to advocate for myself or become a “professional patient.”

Since then, I’ve learned oh so much.

Here are my tips to help you, wherever you are in your IBD journey.

So much to keep track of with IBD

First comes tracking – appointments, symptoms, medications, important contacts, etc.

The logistical information of being a patient is almost as cumbersome as the symptoms and medication used to manage my disease.

As a patient with several different specialists, it becomes difficult to keep track of everything I need, especially when I’m struggling with brain fog or when I'm on the go.

To start, there are several individuals that I need to be able to reach out to at any time – doctors, nurses, pharmacists, specialty pharmacies, hospitals, infusion centers, infusion nurses, etc. Keeping all of this information stored in my smartphone is really helpful for quick access, but I am also a really visual person.

Enter: the notebook.

My IBD notebook

Any old notebook will do. I have one that’s about 5"x7" so it can fit in my purse or bag when I’m out and about. The first few pages have listed all of the individuals and places I frequent, including addresses, phone numbers, fax numbers, my patient ID number within their system, and any nurses or physician assistants I deal with frequently.

The next few pages list my medications with no detail spared. I ensure I have:

• The brand and generic name
• Dosage and frequency
• Expiration date of current prescription
• Anticipated renewal date (I also add this to my calendar so I don’t end up short!)
• Start date if it’s a new medication
• Any notes I’ve been given from my doctor or the pharmacist

Recording symptoms

The middle chunk of the notebook is for symptom tracking.

As a Crohn’s disease veteran who has been in remission for the last 2 years, this might seem unnecessary. But, here’s what I've learned in the last decade.

A lot of times I’ll have noticeable pain or more frequent bowel movements when I’m in the middle of other things, and if I don’t write it down, I don’t remember to include it in my overall health status.

I was finding that I’d go in for my regular 3-month GI appointment, and it was very difficult to recount how often I was having symptoms, or how often I had been concerned about my health.

I have also found that when my Crohn's flares, it’s important to catch it as soon as possible. Writing down changes from my everyday normal allows me to keep track better of anything that might be off.

Appointment section

And most importantly, the last section is for appointments.

While everything I do is added to my calendar, I often need to see my health management at a glance. Having a running list of each appointment I’ve had this season with every doctor, when my next one is scheduled, where it’s at, and any prep work I have to do beforehand has become instrumental in my staying on top of managing extraintestinal manifestations of IBD.

That's a whole lot to keep track of. So if you're looking for a way to stay more organized with your Crohn's or ulcerative colitis, I highly recommend starting an IBD notebook for yourself!