When It Comes Back With No Warning
I'm one of the lucky ones.
I say lucky not because my journey with IBD has been simple, not because my getting correctly diagnosed or finding a treatment that worked for me was easy – because those things couldn't be further from the truth. But what I can say is that for the majority of the last 5 years, I've been living in a form of remission.
Finding the right meds: before and after
It's been a minute since I thought about the "before." About what life was really like before Remicade changed my life, before I found medication – and the right dose and frequency – to minimize my symptoms to smaller than they'd ever been.
That was almost 2 years after I was diagnosed with Crohn's, and almost 8-and-a-half years since IBD symptoms took over my life. I think it's important to note that at that time, I was physically wrecked, mentally destroyed, emotionally burnt out, and flat-out unsure how I could continue life at the pace I had been.
Then, medication managed everything and I slowly returned to being a person with a life.
I found joy. Hobbies. I was able to do the sole most important thing I'd wanted in my life. With the help of IVF, I was able to get pregnant and carry a beautiful baby girl to term.
Planning my life with Crohn's
When I became a parent, my husband and I drafted a lot of plans – plans for our daughter, for our parenting. Plans for my disease, if and when it flared, what it would look like to be hospitalized when our daughter was little, when she was breastfeeding – we discussed it all.
And then it didn't happen.
We counted every small win and kept moving forward, thinking a little bit like if we didn't mentally focus too much on the things that weren't happening, they'd keep not happening, and we'd find ourselves parenting the family we'd dreamed of.
There were "bouts" of symptom increases over the last few years, weeks, and months that needed oral steroids, a few hospitalizations that required IV steroids, testing, and thinking about moving Remicade doses closer together. But ultimately, I felt lucky. I felt like this was part 2 of my life, the part after the agony, after the diagnostic odyssey, after the search for treatment, after the management of care.
When raging Crohn's symptoms come on suddenly
And then, 4 months ago the symptoms came back daily. I waited a week before messaging my doctor. I started using abortive medication several times a day. Then, I started using it preventatively. Then, it wasn't enough. We were sure it was stress, grief, all of the things that can indirectly impact IBD.
But it didn't stop. They didn't stop. The symptoms raged on, as if to say, "We know you didn't miss us, but you should've realized how lucky you have been."
Twice in the last 2 weeks I had to make an emergency stop while out running errands because I just simply couldn't wait 1 more minute to find a bathroom. I've purchased travel bidets for both our home bathrooms because my bottom is so raw from the wiping. I went back to protein shakes because food feels like too hard a gamble.
Why it feels different this time
The difference, this time around? I am raising a nearly 4-year-old daughter, and I'm working full-time - neither things I was juggling pre-diagnosis, pre-remission.
In truth - I'm terrified. Last week, my doctor told me there's no evident labs or stool sample data to explain the severity of my symptoms. I cry, feeling just like I did all that time ago, when there was no answer, and when it felt like there was no hope.
How do I calm my gut when I don't know why it's so angry? How do I know if and when these symptoms will come back again?
How open are you about being diagnosed with IBD?