Managing a chronic illness can be daunting. Keeping track of medication, medical history, a symptom diary, a food log, prescription receipts or important articles can get out of control pretty fast, so if you were to ask me for a single solution to keep this chaos in order, I’d tell you it’s Evernote. I don’t want the following post to sound like an ad; I just want to share with you how I’ve used this software to manage my Crohn’s Disease and my ostomy. I really, REALLY love Evernote!

I’ve been a user of Evernote since 2008 and have over 13,000 notes in my database. I started using it primarily to collect web articles, write short notes and that sort of thing. It was a great way to keep tidbits of information organized, but it’s expanded in functionality over the years and I use it for just about everything. I’ll detail how I use Evernote to specifically help keep my IBD and ostomy life organized. You’ll likely find use for it outside of your illness management, but I’ll let you have the pleasure in finding ways to include it into your routine.

What is Evernote?

In short, think of it as a place to store, tag and sort you digital life. It can be a screenshot, a photo, a recipe, a web article, a PDF guide, spreadsheets, audio recordings, sketches, you name it. You can use Evernote just about everywhere and on pretty much any device you own. I use it on my laptop, my smartphone, my iPad, my android tablet, and I can access my data through any web browser on any device that can browse the web. There are browser plugins which allow you to capture websites or take a screenshot of something you’d like to save and it goes into your Evernote account. Once it’s saved, you can put it into its own “notebook” and/or tag it for easy retrieval later on. Evernote has a powerful search feature that will not only allow you to find words in plain text notes, but it will also search for text within your photos or scanned documents. This can come in really handy if you need to look something up within a scanned set of notes, like receipts.

It’s actually really hard to explain what Evernote is without actually seeing it.  Unfortunately, I’ve got too much personal information on my Evernote to post a screen capture.  Here is a generic UI instead:

evernote_web ui

Screenshot courtesy of http://blog.evernote.com/

How will it help manage my IBD or ostomy life?

Let me break down a few ways in which I use Evernote to manage my Crohn’s and ostomy life.  Perhaps you already do these things on paper or in separate apps, but if you’re looking for a way to keep your data consolidated, Evernote is a great place to start.  Please note that I’m a Premium Evernote user, so certain features like searching within PDF files or notebook collaboration aren’t available in the free version.  I will include a special link at the end of this post which will give you a month free of Evernote Premium.

Daily diary (symptoms, food log, medication and more)

Perhaps the most important thing you can do for yourself when you’re newly diagnosed with IBD or are preparing for an ostomy, is to keep a diary of how your feeling, what you’ve eaten, any medication or supplements you’ve taken or anything you might find relevant to keep a record of.

I have a template that I use everyday to record the things that I feel are most important. Here’s what my basic diary template looks like:

Evernote diary template

My diary template. NOTE: the title is “Diet:” because that’s the first sentence in the note. I would usually change that to today’s date.

I add things as they happen and modify it as I like.  My current log is pretty simple, but wasn’t always like that; I had long lists of medication and supplements, I had a “fistula report” which I wrote notes about my ongoing perianal disease, recorded exercise and activity or mood.

In addition to the basics, I also like to record when I’ve changed my ostomy appliance and if anything significant happened that day. To the note, I can add photos, documents, an audio file or anything I might feel is relevant to add. I title each diary entry with the date, then I tag it and file it in a specific “notebook”.  Think of these notebooks as a folder on your computer and the notes being the file. Each tag is a category, and if I ever need to search for something or look back at my history, I can do so with ease because of this type of filing system.

Photo journal

I take photos of my peristomal skin (like a stoma selfie) every time I change my ostomy appliance. It helps me to keep a visual log of how my skin looks, how eroded my ostomy wafer is, how my scars might be healing, and if there are any changes I need to document for that particular day. These photos have come in handy dozens of times, especially during my post-ileostomy recovery and when I had my rectal surgery. There’s nothing more awesome than being asked a question by your nurse or doctor, then whipping out your phone to retrieve the information you need on Evernote. This makes remembering things a lot easier (since you don’t have to remember a thing!).

I also snap pictures of special meals that I’ve enjoyed for future reference.

Receipts and invoices

I keep track of all my invoices and receipts through Evernote.  My smartphone allows me to take a photo either through the Evernote app, through my phone app (and then share the picture to Evernote) or using CamScanner, which crops and cleans up receipts automatically.  I also include packing slips from samples I received from various supply vendors, since it’s always handy to go back and see what was sent.

Prescription receipts, ostomy supply receipts (important if you’re dealing with an insurance company or for income taxes), instruction slips for medication or products can also be added.  If you need to find all your medication receipts from a specific pharmacy, you can simply search for the tag (assuming you’ve tagged those notes with the pharmacy name) or have Evernote search for the words within the photos of your receipts.

Websites and articles

See an interesting new study on IBD that you want to keep for later? Evernote it. Read an amazing blog post that you want to keep forever? Evernote it. Shopping for new IBD awareness shirts? Evernote your favourites and decide which one you like best.

I have a lot of clipped websites… Likely thousands, but because I can categorize each one with relevant tags, I can easily refer back to a specific subject (tag) instead of scrolling through pages of notes.

Evernote webclipper example markedup

How I usually clip websites. You can skip steps 2-5 if you just need a quick capture!

Here’s an example of a study I clipped. Notice the tags I used. If at any point I needed to find this particular study, but I don’t remember the title or details, I can simply search for a few tags (or one tag) that I know will narrow down the results.

Evernote Tagged note with markups

Tagging notes makes things a lot easier

Do More With Evernote

There are other ways in which you can use Evernote to help manage and organize your illness treatment.

  • Notebook sharing. Allows you to share specific notes, which can come in handy if your spouse or caretaker needs information related to current medication you might be taken.
  • App integration.  Many apps on mobile and browser plugins offer integration with Evernote.  There’s an entire website dedicated to them! http://appcenter.evernote.com/
  • Syncing. I mentioned that is use Evernote on a lot of different devices, that’s because Evernote syncs between my devices, so if I add or update a note on my laptop, it will appear on my smartphone (which I can also set to offline mode to conserve mobile data while keeping your database saved on your device).
  • Notes can be geotagged so you know where a note was created. This comes in handy for photos, and the feature allows you to see a map of your geotagged notes too.
  • Reminders.  Yes, Evernote can even become your to-do list with a reminder feature.
  • Checklists.  You can add a checklist to your notes, which can be a great way to prepare for an upcoming hospital stay.
  • Note linking.  This is a more advanced feature, but it allows you to link one note to another, much like how a website can link to another website.  This can be very useful when you have two separate notes that are both relevant and you want an easy way to link the data.  For example, I can link a note that includes photos from my recent ostomy appliance change to my daily diary note.  So when I click on the link in the diary note, it will take me to my photo note.  I also use this when doing research, as it allows me to create a master note, which looks like an index, that can link to separate studies, web clips or document notes.

Conclusion and how to get Evernote

I’d highly recommend Evernote to not only manage your daily notes, but especially to help manage your IBD or ostomy-related notes. Anything to help improve the life of the chronically ill is a winner in my books.

UPDATE: April 29, 2015

Evernote is now offering a new “Plus” tier in addition to their Premium tier. Here are the details, pretty much copy and pasted from their site:

Evernote Basic FREE

This is our free, starter option. This is where you’ll familiarize yourself with Evernote, install it on multiple devices, define your organizational style, and establish a workflow. You’ll learn, explore, and grow in this tier. There are a few limitations, but nothing that would slow an early user down. Stay here as long as you like. When you’re ready, check out our more advanced levels.

Meet Evernote Plus: $2.99/mo

Evernote Plus is new. It’s designed around the engaged, active Evernote user. You’ve figured out the basics and are looking for more space and more flexibility. This tier unlocks 1GB monthly uploads, offline access to notes on mobile, passcode lock, and the ability to automatically turn emails into notes in Evernote. All this for $2.99 per month or $24.99 per year.

The new Evernote Premium: Unlimited uploads

Evernote Premium is the professional workhorse. We’ve upgraded it with unlimited uploads and larger individual note sizes because having all aspects of your projects together in one place is key. We also packed every business-critical feature into Premium in a beautifully designed way that matches your needs. All of your writing, research, discussions, and presentations are kept together in a single place. No app switching. No digging for content. It’s all in Evernote. Go Premium for $5.99 per month or $49.99 per year.

You can sign up for a free Evernote account by registering through their app or website, and you can upgrade to plus or premium anytime. Here is a referral link that will give you a free month premium for signing up.  Before you sign up through that link, I want to be transparent – I will get referral “points” when you sign up through that specific link, but I’m posting it so you can try the premium features free for a month, not so I can get points.  I didn’t start the VeganOstomy blog to make money, which is why you don’t see ads or sponsored posts anywhere on this site. I would never recommend anything that I wouldn’t want to personally use or purchase myself.

If you don’t want to use the referral link, I understand.  You can go to www.evernote.com instead and sign up there (or through the app).

Evernote tshirt selfie

Yes, I wear this t-shirt so often that the graphic is cracking away!

QUESTION: Do you use software to manage your IBD or ostomy?