It's Not A Surprise

As a Crohn’s disease patient, there are some hard and fast rules I’ve adapted to over the years in order to keep my body functioning at an ideal capacity. No matter what my disease activity looks like at a given moment, what season we’re in, what’s going on in my life, or really, any other variable, some things just aren’t able to change for me. Things like my list of non-negotiable foods, or my inability to go to bed without taking my night meds are just basic examples of ways in which my life circles around my illness, even when I don’t think it does.

After recovering from a small bowel obstruction this winter, I have been INCREDIBLY lucky my Crohn’s disease symptoms have been mostly manageable because of my Remicade infusions and my other regular medications. As this has been the longest I have felt “well” in almost 9 years, I’ve been trying so hard to revel in every single moment.

Worry that symptoms will come again

Staying present is one thing that I’ve noticed is infinitely harder for me than it was before I got sick. I always wonder if other patients have felt this too. It’s so so easy for me to worry about when the next time will come when I don’t feel well again, when I will need to cancel plans again, when I will end up in the Emergency Room again, etc.

Getting out of my head

When I am alone, I have found grounding techniques like the ones offered by the Calm app to be extraordinarily helpful. Guided imagery and meditation are usually able to stop me from spiraling into unhealthy thought patterns. When I am with people I am very comfortable with, I am sometimes able to do a better job getting out of my head and being fully in the moments that we are together. The place that this is absolutely most challenging for me? In a restaurant.

I feel like my IBD friends will understand me when I say my relationship with food is complicated. Food has at many times been the enemy, and it has been frustrating and stressful to try to make the best choices I can with the information I have.

Adding to my limited diet

As I mentioned, since I have recently been feeling fairly stable for the first time in a very long time, I have begun introducing things slowly back into my diet. No changes have been radical, and all changes have been discussed with my GI and a nutritionist, but the changes have surprisingly gone fairly well. Of course, there has been a period of adjustment as I’d previously been relying on one hundred shades of carbohydrates, but overall there have been many positive things to note. I’m experiencing better sleep. I’m finding more energy. I enjoy cooking again. And quite frankly, being able to make choices on what I want to feed my body instead of being forced into decisions on what my body might accept has raised my spirits significantly.

Last night, I went out to dinner with my husband and an old friend, and I decided to treat myself. After we ate, I got a small milkshake, which was much more sugar than I’ve consumed in quite some time. I noticed two things while I drank it. First - it didn’t taste as good as I remembered it to; and second, I was okay with this. I don’t want a milkshake every day, or even every week. I want it once in a while!

Then the pain started

I was feeling pretty grateful for a great meal when we said our goodbyes and headed for home, but that only lasted about 10 minutes. In the backseat of our uber, I turned to my husband slightly panicked and said “Oh, there’s pain.” Although I have been so so grateful and lucky to have gone a few months without feeling that certain, specific, sharp pain in my small bowel, in that moment I felt overwhelming disappointment. Was this the end of my symptom relief? Was this the beginning of a path towards surgery?

When I got home, I texted a friend saying “You know you have Crohn’s when... You’re not surprised by shooting pain that comes out of nowhere.” Pain you haven’t felt recently, but pain you will always stop breathing for. Pain that instantly takes you back to feeling completely vulnerable and powerless. My friend replied, focusing on the words not surprised. She expressed sadness that this is our reality, but also a little bit of pride in knowing that we have become brave enough to soldier on.

Unpredictable

I did all of the things in my control last night, and I returned to a gentle diet today. My stomach is still off, but not in a way that makes me overly concerned. Just in a way that reminds me, as an IBD patient, that my insides will never truly be predictable.

Have you come to this realization before? How has it made you feel?!