With IBD, are sometimes the 'what ifs' worse than the reality?
I'm not going to lie. As I'm typing this, I'm having one of these evenings when I get caught in a 'what if?' cycle. I've not long blogged up about my experiences in starting Humira. And whilst they've been largely positive, tonight I got caught in a cycle of worry and anxiety. If you're anything like me, they'll start by just wondering about your illness. They'll end in a 3-hour google rabbit-hole search in which you convince yourself a severe flare is imminent and in fact, you've also got 27 other rare diseases alongside IBD.
The cycle began after my recent doctor's appointment. I'm 16 weeks pregnant. I'm feeling good (well, despite sickness and you know feeling emotional every 5 seconds) and my symptoms are the best they have ever been. However, my stool tests showed that levels haven't changed much since last year.
The "what if" cycle of IBD
Unfortunately, my doctors' approach to testing is erratic (thanks NHS) and it's been over a year since I last did one. I really should have pushed for one pre-starting Humira. So because of this, we don't really know much. We (well, I) are now in a cycle of...
- WHAT IF my levels got much higher before I started Humira (likely as I flared badly in my first trimester) and are now on their way down as a result of the medication.
- WHAT IF the Humira is not working at all even though I feel incredibly well?
- WHAT IF my body has just stayed the same as last year but isn't getting worse (a scenario which wouldn't be awful; as an MRI before I fell pregnant/started Humira showed I only have a few small patches of disease when my markers were at their highest)
- WHAT IF I don't have Crohn's at all but a secret, deadly disease that is yet to reveal itself (which apparently is so rare it has no symptoms). A scenario which my pregnant, hormonal brain loves to refer back to.
IBD is unpredictable
It struck me that we can never really know what is happening with IBD and that's the thing I hate most about it. My doctor is confident that my falling pregnant, weight gain, non-existing symptoms, and healthy blood tests are all good signs. And that when he looks at my stool tests in the past, they just aren't following a pattern (at my worst when I lost a stone and constantly had toilet trips, the marker was at it's lowest when tested for several months- go figure.)
When we look at all these tests, we need to take everything to account and not just focus on one test, he explained. Which is probably the most annoying thing about this disease: can't we just pop a camera inside my colon each week to come up with a definitive answer?
But that's not the most annoying thing. The hardest thing about this all is that a quick check on my phone revealed that over a year ago- pre-pregnancy, pre-Humira- I found an old text message chat with my mother. This was over 12 months ago; just before my MRI and after the results of my high stool test. In it, I had mused...
WHAT IF my levels were higher and coming down.
WHAT IF my body has just stayed like this for a year and because my doctor only just started doing stool tests (my previous one just did bloods) I wouldn't have known.
WHAT IF this isn't Crohn's at all but a secret, deadly disease that was yet to reveal itself.
Nothing had changed in a year
365 days. 52 weeks. It had been a whole year of 'what ifs' and in reality, nothing had changed. Don't get me wrong, I was blessed with a pregnancy and feeling well. But I still couldn't shake the feeling of uncertainty. I still couldn't match the symptoms with my results. And we still couldn't definitively figure out what was happening in my body.
Yet that wasn't the worst of it. I realized I had spent 365 days worrying about 'what ifs' and my 'what ifs' were still now exactly the same. A mystery disease hadn't yet revealed itself. I'd had mini-flares and come through them. I'd had good days and bad days. I'd had good results and bad results. And in each of those days, the 'what ifs' we're much worse than the reality. Because I lived it, got through it and I'm still faced with the same uncertainty as before.
I've come to the conclusion that my doctors approach is a sensible one. Both me and baby will be monitored closely and we will retest after the Humira has had a little more time to work; considering steroids if my symptoms flare. However, the more important realization was that when it comes to my mind, I need to accept there will never be an end to the 'what if's' when it comes to my disease. Only I can try to stop the cycle of 'what if...' and start to think 'what if...we just wait and see?'
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