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That Scary Feeling When Pain Hits

It took quite a long time to receive a Crohn's diagnosis. It took even longer to start receiving proper treatment. And even more years have passed of me waiting for my health to improve. All of this has taken years to accomplish.

As I embark upon my eighth year of truly treating my Crohn's disease, I've finally hit the holy grail — deep remission. But within this space, I have a deep-seated fear of relapse. Nothing shakes me to my core more than random belly pains.

IBD pain that seems to come out of nowhere

Some of those odd pains that come from nowhere you can explain occurred over the last few weeks. Of course, they didn't occur leading up to my GI appointment. So, out of sight out of mind, right?

I've grown accustomed to living in a constant state of pain due to my Crohn's disease, psoriatic arthritis, and Hashimoto's thyroiditis. My pain level hovers around a 3 on any given day. It is mainly associated with the psoriatic arthritis in my hands to fingers, lower back, and heel to toe. Sure, I have dull pains that live within my guts especially after eating, but I have learned to tune them out. A 3 for me is probably more like a 5 to 7 for a regular Joe. I'm sure you can relate.

Alarming deep pain in my abdomen

This is why, when I am hit with a deep stabbing or burning pain in my midsection, it stops me cold in my tracks.

Our brains are powerful organs. They manage to retain memories as well as help us block really bad ones out. I feel this can definitely be attributed to "pain memory." For the record, "pain memory" (to my knowledge) is not a clinical term. But it's one I use.

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A "pain memory" of Crohn's or colitis

My explanation of a "pain memory" is a faint memory of something that hurts in your body. You vaguely recall it happening. And you may even be able to recall where you were when it happened. But you will not be able to remember the feeling exactly.

I have many pain memories from when the flare I'm now coming out of started up. One pain memory, in particular, took place while I was staying at my cousin's house in the Midwest. It was fall in 2015, and I was receiving treatment from an injectable biologic and traveling to educate medical staff on how to better serve IBD patients.

The pain hit as I settled into bed. It came from out of nowhere. It felt like razor blades were strangling my guts. I began to count through the pain and it slowly died down. A while later it happened again and again.

Fearful when pain starts

I felt scared for so many reasons. Aside from not being close to my own doctors, I was fearful about my medication no longer working. At the time, there were no other alternatives available for best treating my disease.

As I ran through my internal checklist of whether it was necessary to go to the ER, the pain eventually eased up and then subsided completely. By the morning, it was a pain memory. As I explain it to you now, I can't physically recall how awful it felt but the memory of it occurring is engrained into my psyche.

Will the pain stop?

This and other events like it are why I feel my breath escaping when significant pain hits my guts from out of thin air. It's always the same first thought, "Will this be the time it doesn't stop?"

I've never been a glass-half-full type of person, and I am doubtful that I ever will be thanks to Crohn’s disease and its painful memories. I'm trying to work on it, but I am also a realist.

How do you cope with that scary feeling when it may be your Crohn's or colitis?

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