Two months ago, I read an incredible piece by Tessa Miller in the New York Times about living with Crohn’s disease. “Seven Thanksgivings ago, I got sick and I never got better.” Make mine 12 years and it’s right on the nose, Tessa. As I scanned down the article, I felt as if I was reading my own biography.
Up until the last few weeks, you probably noticed less of my presence on social media or in your texts/snaps, if you’re paying attention to those things. I’m slowly getting back to there, but if you’re wondering why, my Crohn’s has come back just enough to try and kick my ass.
It’s been quite some time since I took to using this platform (getting on two years!), so I figured I’d give a little update on what’s been going on with me health-wise over the recent months. There’s been a boatload of things that have happened, so if I missed anything it’s bound to be because I blocked it out or just genuinely forgot after feeling a little loopy on pain medications post-surgery.
Oh yeah, about surgery.
Since my first post, I’ve been on a surgical table three times. But we’ll get to all of that.
In early October, as scheduled, we reversed my ileostomy successfully after failing to do so in January. For the first few days, it felt pretty great to have normal digestive tract again and not have to go through the hassle of having a bag attached to my lower abdomen.
But honestly, even by the second week, I started to feel some strong Crohn’s symptoms that I hadn’t experienced in over a year in half, essentially before my first surgery.
Within a month or two, I felt constant pain each and every day. Whether that was in my belly, lower back or literally in the ass (sorry not sorry), it felt like I was at a war with myself. I’d constantly wake up in the middle of the night and lose about three-to-four hours of sleep. Extra strength Tylenol and a heating pad can only do so much to help.
By the middle of this January, the change over the New Year brought now new me and even the biologic medication I was taking was doing me no good. Toward the end of the month, the pain got to be so unbearable during a work shift that I ended up having my mom pick me up from Brooklyn and deliver me to the emergency room on Long Island.
I guess unsurprisingly, my body was a mess and had fistulae in the GI tract, which kept me cooped up in the hospital for about a week. Even then, I still didn’t feel right.
It was around this time that my good friend Justin Birnbaum, who is also fighting his own battle with IBD, suggested I give his GI doctors at NYU a shot and see if they could devise a good game plan for me. I was able to snag an appointment at the end of February, and I cannot begin to thank Justin enough for giving me that advice to see his GI.
NYU didn’t know me from a hole in the wall, so they set me up with blood tests, an MRI and a whole world of tests just to kind of get a baseline of what was wrong with me. And after five days, it wasn’t a question of what was wrong with me; it was what wasn’t wrong with me?
Keeping it simple, my white blood cell count was off the charts in the worst way possible and I had at least three abscesses (honestly don’t even know if that’s the correct plural form, but that’s what I’m rolling with) and needed to come to the ER in Manhattan immediately.
I knew it was bad, but man, I had no idea I’d essentially be back at square one. During my Uber ride from Brooklyn to midtown (I can now cross off taking a rides share to the ER off the bucket list), I looked out the window and probably shed more than a few tears. Even with the pain and the prospect of a third hospital stay, I just wasn’t ready to reckon with being *that* sick.
But I wasn’t just *that* sick. It was even worse.
Once I was settled into the hospital and had a few more tests run, we found out all about my infections and low red blood count. Even at that point, it really didn’t hit me — or maybe I just didn’t want to believe— just how low things had gotten, but when I was given a blood transfusion for the first time in my life, I kind of took a step back and thought, “Shit, why? Just what is happening? This isn’t supposed to happen to me.” This disease doesn’t discriminate, though, and yeah, it was me this time. But hey, I learned I’m A-positive.
We originally intended for surgery that stay, but once we saw the severity of my infections, decided on holding off until late April to let my body heal a little. I’d go home with a PICC line, used for both antibiotics and TPN for sustenance. It wasn’t an ideal setup, but I’d be back home.
Well, that lasted all of four days.
The pain didn’t subside and my surgeon admitted me back to the hospital and scheduled me to have another ileostomy done in the coming days. For a 24-year-old, it’s not even close to an ideal setup but it gave me a sense of relief that we could do something to get the pain to subside.
Lo and behold, we created a new stoma and things already felt better. Still in the fog of surgery, I talked to my parents and then Justin on the phone, though I cannot tell you a single thing I said during those calls. I’ve never blacked out before, but this must be as close as it gets.
Things were truly feeling like they were progressing and I thought I’d be home in a few days. But just a day or two later, I felt a chill at night. Then I got warm. Not just warm, but as if I were in the worst summer day in Florida. When the thermometer read 103 degrees, I think myself and the nurses thought it was surely a mistake. A second reading agreed with it, and I immediately had an EKG done followed by a CT scan.
After all of the results were analyzed and re-analyzed over the next few days, we figured out another abscess was causing all of this. So, IV antibiotics were the course of action. But, even during this, I’d catch a chill then fever and rinse and repeat. I’d never really considered my own mortality before, but when I saw my temperature rise to 102-plus on a consistent basis, I wouldn’t lie if it didn’t creep into my head a little bit.
“Why the fuck is this happening to me? Is this how it ends?”
I hardly had any energy to move, let alone look at my phone. There were points during this time I almost had no idea what was going on in the outside world. I didn’t feel like eating. Lethargy ruled the day. It didn’t even feel like I was in my own body.
While all of this was happening, I still felt so lucky to have the support from my parents, brother, godmother and uncles, who all took their respective treks in to visit me. Getting all the texts from friends, even if I didn’t respond right away, was a nice feeling, too. It might seem small, but having all of these people stop by or just check in with me meant the world. My co-workers at MiLB and NHL/Disney Streaming have been so supportive and understanding, which I could not be more grateful for. The same goes for all of the doctors, nurses and medical staff at NYU. They did their best to keep my spirits up and work my case. Plus, having a gigantic TV and an amazing view of Long Island City was pretty baller. Sidebar, would 100 percent pay rent to live there.
Anyway, eventually we switched to stronger IV antibiotics, which seemed to do the trick. I still didn’t totally feel like myself, even when things were moving in the right direction. I just felt blegh, and that’s really the best way I could describe it. After spending essentially all of March in the hospital, it just felt that everything and anything was going to keep me there.
But, I thought about my mom, who dealt with breast cancer and chemotherapy. And my brother, who has had more surgeries than me for Crohn’s. And then one of my story subjects this offseason, Clate Schmidt, who had his own cancer battle. Something he said to me really stuck: “My story isn’t being written for me. It’s being written for those behind me. And that was always something I took to heart.”
Even though it felt like my discharge date felt like it’d never come, finally on April 3, I got the approval to get home — just in time for MiLB Opening Night. I’d be home with a new PICC line and IV medications every eight hours. Not the best of situations, but I’d be home.
And since then, things have improved at a good pace, and follow-up visits from my doctors have gone better than I expected. I’ve had a better appetite and even had pizza! You know that’s when things are improving for me.
I even bumped into my surgeon, who gave me a big hug and asked if I wanted to wrestle him. Not yet, Dr. Remzi. That’s a fight I’m never winning.
Thursday I’m ending my IV medications and supposed to get my PICC out the following day. With things moving in this better direction, I cannot be more thrilled to get back out and live a relatively normal life, to say the least. I can’t wait to get out for a few hours without worrying about hooking myself up for my next dose of medication. I can’t wait to catch a game or two. I can’t wait to get back to work.
I know there’s still a long slog ahead. There are still days where getting up is a challenge. And then staying up is even more of a challenge. Crohn’s can suck and come to ahead at any time. There are days where I just feel anxious and isolated. But with my big team of doctors having their plan in place, I feel a lot more comfort knowing there’s cohesion between everyone. I’m slated to have more surgery in ~six months to “clean me out.” There’s definitely some anxiety about that, but I know it’s for the best and I have to do it if I want to keep getting better.
And that’s the thing with Crohn’s. People will tell you you’re tough and they couldn’t handle it. But to me, and I’m sure a lot of people dealing with it, I don’t feel tough. It’s just become second nature and part of my every day life. There’s an insatiable need to get better, and I’ll do anything possible to get however close I can to achieving good health.
One day, I’ll get there.