What’s the Plan?

* I started writing these blogs to educate and help others navigate their journeys with Crohn’s and invisible illnesses. I knew that at some point I would have to share the ugly side of my journey. This blog shows some of the ugly side. The good, the bad and the ugly of this journey has made me stronger.

** You can’t talk about coming out stronger if you don’t talk about what made you weaker.

Are you a planner? Or, are you a “fly by the seat of your pants” kind of person? Do you plan your days? We plan parties. We plan weddings. We plan vacations. We have work calendars and home calendars. But, how far do we take the planning and scheduling?

Some of us have no choice. We have to be planners. When you have an autoimmune disease, especially one like Crohn’s, you have to do a lot of planning. If you have a morning appointment, your planning starts the night before. You go to bed early so you get 8 hours of sleep. Sleep is important to keep your energy up. The next important part of planning ahead is getting up early. I have always been a morning person.
With Crohn’s, I have to be a morning person. If I have to be somewhere at a specific time, I add an hour (or more) to my morning routine.

I have to plan for the unexpected . . . and, the unexpected is the ugly side of Crohn’s. (I have debated on whether to share all the ugly parts of my journey. It might be a little embarrassing but this blog is to educate and help others with autoimmune disease. To do that, I must move beyond the embarrassing parts.)

So, I am a planner. Planning gives me some order and, maybe, a little control. But, plans change. Recently, I woke up at 3:30 a.m. to go to the bathroom. It was too late. A lot of times, Crohn’s means having an urgent need to run to the bathroom. I have chronic strictures. A stricture is a narrowing of the intestine. It can be so narrow that it is almost completely blocked. When there’s a partial blockage, the stool will be blocked and partially bypass the blocked area (stricture). This causes diarrhea, often without warning. I have a procedure several times a year to stretch or dilate the stricture. Each time, I hope the stricture will stay open longer than the last time. It is both humiliating and humbling to be in your 50s and wear incontinence products because you never know when you might have an accident.

So, if I tell you I’m a morning person and I get up 3-4 hours before I have to be somewhere, it’s because I have to plan for the unexpected.

What are my other plans? My morning routine includes time to take 14 pills. Some of my extra time is in case I’m nauseous that morning. When I’m planning my week, I plan at least one day as a day to stay home and re-charge my batteries. It’s important to plan a rest day.

When you have Crohn’s or any autoimmune disease, you make plans, you break plans, change plans, and, you have back-up plans. The important thing is to keep planning.

Reflection: The best laid plans . . . may never happen. We all make plans that we have to change. The important thing is to keep planning.