Handling Responsibility with IBD

by Brian Greenberg Patient Advocate

Each day, people with inflammatory bowel disease (IBD) wake up with a lot on their plate. The list of tasks they may need to complete from the moment their eyes open can be extremely long. It includes taking medications, changing an appliance, taking care of a surgical site, using a port for nutrition, staying hydrated, eating the correct foods, managing the disease overall, and many more. It’s a full-time job.

This is why it’s important for IBD patients to do everything they can in order to stay on top of these tasks, while not letting other things fall through the cracks. The best way to stay on top of everything when you have Crohn’s disease or ulcerative colitis is to come up with a system that works for you. It’s important not only to manage your disease but also to make it easier to focus on the other things life throws your way every day.

Here are some tips for creating a system that will help you manage your disease better:

Bookend your day: The first step in making every day easier is to bookend your day with the same routines. This will include both a nighttime and a morning routine. You may be asking, “why did he mention the nighttime routine first?” Because the following day begins with how you prepare for it the night before. With that in mind, take a moment to create a list of five to 10 tasks that you know would make your life easier if you did them every night and every morning. Go through the list every day and track your progress for 30 to 90 days, which is how long it takes most people to build a habit. After that, you may not even need the cheat sheet again.

Challenges during the day: Your next task will be to write down all of the possible challenges you may face in a given day. Don’t leave anything off this list, because it will come in handy in the next step. These can be small or they can be large — include any curveball that may be thrown your way. It’s an important part of the process to write them down, so that you can visualize them easily.

Create a system: It’s said that the average worker loses 45 minutes or more each time they are distracted from a task they are trying to complete. Can you imagine what that number is like when someone has to drop whatever it is they’re doing in order to manage their disease? This is why we need to put in place a system for each of the challenges you listed. This way, if anything happens, you have a list of tasks that you’ll need to do in order to get back on track.

For example, with Crohn’s disease, I sometimes have to deal with a leaky ostomy. Here is my system for handling it:

  1. Go to the bathroom and access the leak. Is this something that I can wait to handle by using a little bit of added toilet paper? Or is it severe enough that it needs to be changed now?

  2. If it needs to be changed immediately, I try to leave whatever I was doing in a good place. This may include tidying up my desk at the office or organizing a project so that I can come back to it easily.

  3. Set up all of the supplies required for an ostomy change in the bathroom ahead of time, so that I can access them easily during the change.

  4. Line the floor with an extra towel, so that any discharge is easier to clean up.

  5. Hop in the shower and clean myself off.

  6. Shave the area around the stoma in order to make sure that I get the best hold possible for my ostomy.

  7. Rinse off one last time.

  8. Get out and dry everything off.

  9. Use one adhesive removal wipe before applying my ostomy.

  10. Dry the stoma with a piece of toilet paper right before applying my ostomy.

  11. Apply ostomy supplies onto my body.

  12. Take a breath and hold it in place.

  13. Clean up everything that needs to be put away or thrown out.

  14. Grab my phone.

  15. Turn on a meditation app to calm down and refocus my day.

  16. Open up my computer and listen to a motivational video.

  17. Dive back into the rest of my day.

I know what you’re thinking: 17 steps are a lot! However, the list includes everything that’s required for my ostomy change routine. It also keeps me from getting thrown off guard when I need to change it. Because it’s always the same, I can follow the steps until it becomes natural. The routine also ensures that the leak doesn’t completely derail my day. Some of the steps are extremely short, but I wrote them down to remind myself of the little things that can be easy to forget.

Once you have a system set up for the challenges of the day, as well as a series of nighttime and morning routines, you’ll be amazed at the other tasks and responsibilities you’ll be able to take on. A weight will be lifted off your shoulders, because you’ll know that if something unexpected comes your way, you’ll be able to take care of it and then jump back into your other responsibilities.

Brian Greenberg
Meet Our Writer
Brian Greenberg

Diagnosed at 11 which makes his Crohn’s career 24 years. After countless surgeries of various levels, Brian decided for ostomy surgery. Now he's lived with an ostomy 7 years and made it permanent 4 years ago. Doing everything he can to overcome his disease and live a normal life. Brian is also a Social Ambassador for the IBD HealthCentral Facebook page.