We Have to Plan to Plan - Life & Routine with IBD

For as long as I can remember, I’ve always identified with having a “Type A” personality. I used paper calendars and assignment notebooks through elementary, middle, and junior high school. I was adamant about finishing school homework, extra credit, and group projects to the best of my abilities and as promptly as possible. And I used color-coded pens and highlighters in my class notes and managed my schedule with time blocks. This spilled over from academics to extra-curricular activities seamlessly especially as my calendar filled.

One of my favorite stories that my dad tells is from when I was in the 7th grade, and he would pick me up from after school pom’s practice and drive me to my ice skating lessons. During our 35-minute car ride, I would change my clothes (in the backseat, of course), eat dinner, and practice singing my Haftorah portion for my upcoming bat mitzvah. It was truly multitasking at it’s finest - and I learned that it made me feel a little like superwoman to do all of these things efficiently.

Tracking painful and disruptive GI symptoms

When I first started managing consistently painful and disruptive GI symptoms, I was one year out of college, and assumed like any naive person that after a few weeks, tests, medications, I’d return to my “normal” life. When weeks turned to months and then started to turn to years, I attacked my reporting just like I had my life of academics. I kept immaculate notes, detailing what and when I ate, what my symptoms were, what my pain levels were, which medications I had taken and failed to see results, what tests I had tried. The longer I was ill, the more folders and notebooks and binders I accumulated. I knew that it was my job to help the doctors diagnose me, and from what I had seen, they needed all of the help they could get.

Fast forward about a decade, to this current season of my life. I’ve now spent several years as a Crohn’s disease patient, and am lucky enough that the last 14 months have been spent in remission. I’ve had several ups and downs with this disease, and about as much practice on what works best for me in terms of management - not just disease management, symptom management, medication management - but “life” management too. The way that I operate on a daily basis, whether in an active flare or not, almost always comes down to having a plan, or planning to plan.

Let me explain.

My different plans for Crohn's

In my life up until September 2018, there were only so many different types of Crohn’s plans I needed at one time.

  • There was the highly symptomatic, at home plan, involving work contingencies, moving and canceling plans, managing the house, and my food/drink intake.
  • There was the highly symptomatic, must go to the ER/Hospital plan, involving clearing my schedule, and most recently, finding someone to come love on our pup.
  • Then there was the minimally symptomatic, at home plan, which mostly involved living my regular life with some “IBD” adjustments.
  • And finally, there was the non-symptomatic, at home plan, which basically involved being prepared at any time for one of the above plans to need to be instituted, and always involved having a packed hospital bag ready and emergency foods/drinks in house.

You may wonder what or how these plans have changed in the last 8 months.

Well, you see, in September 2018, after almost a year of fertility treatments, I found out I was successfully pregnant with my first child.

Carrying a baby with IBD

So, the plans above have all been altered to include my growing babe in the time that she has existed in the womb, but those plans have been more in terms of keeping her safe than anything else. As she is fully reliant upon me, my body and my health, the adjustments to my plans have been serious and important, but have also been limited to that scale.

In the next few weeks, the tide will change. My daughter will enter the world soon, and all of my IBD plans will have to involve her too. As I think about things, about having to plan to plan, I realize there is so much I want to share on this topic.

Please take a peek at the next post in this series: Preparing to Become a Mom with Crohn’s Disease.

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