I promised myself I wasn’t going to use some sort of clickbait headline for this blog and just use “Another Life Update” or something basic along those lines. But in reality, it’s not clickbait although I wish half of it was.
Truly, it’s hard to narrow down what’s been the toughest year of my life. It could be 2007 when I was diagnosed with Crohn’s and had to explain to my classmates that, no, I was not chewing gum in the gym but why my face ballooned and what exactly Prednisone was (granted, I really didn’t know at the time, which was probably for the best).
It could be my sophomore and junior years of college when I was working late nights for the newspaper and would inexplicably get sick and throw up without explanation. And still to this day what scares me the most is I still don’t know what the exact cause of that was.
It could be 2017 when I started my first real job in journalism out of college and little less than a month into the gig I got so severely sick that I needed to undergo my first surgery.
In reality all of them and other years have valid cases but honestly this year has felt like a decade. For anyone who’s close to me, you know I take pride in trying to remember every detail from anything I’ve done. But this year, I’ve forgotten plenty and I’m sure that’s in no small part due to the mix of trauma and just sheer number of tests, exams and procedures I’ve undergone.
If you missed what happened earlier this year, in short, I got a lot closer to death than I ever would have thought at 24 and went through a hellish few months that I’d never like to experience again.
Eventually, I did get my PICC line out and no infection returned — a huge victory. I caught a playoff hockey game and some baseball games and just tried to resume normal life without having to rely on IV antibiotics every few hours. To break that tether that kept me at home was a relief.
But it wasn’t to say that it was all ups from there. I ended up back in the hospital at the end of May because my appetite was gone and I couldn’t hold anything down. Thankfully some IV fluids mainly did the trick and I was *only* there for four days, a record-low for me.
There were periodic visits back to NYU for checkups, followups and iron infusions and whatever else along the way. What they don’t tell you when you have a chronic illness is that you basically have a second full-time job on top of your actual job and other life responsibilities.
I still wasn’t 100 percent and I could feel it. There were days this summer where I still needed to sit on a heating pad in my room, out of breath during a bad wave of humidity. My stomach still hurt plenty and I wasn’t eating as much as would have liked. Days where I would have liked to have spent with friends or family I instead sat at home and wondered if this was just going to continue to consume and isolate me.
And this was all before my next surgery in October when I was going to get “cleaned out.” Those two weeks leading up to the partial colectomy (along with some other fixes and drainages while they were already in there) were, uh, not great to say the least.
I lost my appetite, felt constantly nauseous and my heating pad was maxing out at 160 degrees so I could have some sort distraction from the constant discomfort. I dropped somewhere in the neighborhood of 8–12 pounds unintentionally, so that didn’t make me super confident going into the procedure.
But Oct. 8 came and back at Tisch Hospital I was ready for whatever they needed to do. My surgeon didn’t know how much he was going to need to take out to help things, but I was reassured that he was a “colon conservationist.” I hope Dr. Remzi uses that as a nickname.
Sitting with my dad in the waiting room I truly felt I was going to have a panic attack but finally the nurses took me into the operating room. After they put the epidural in spine (new one for me, which is saying something) I don’t remember much or even getting the anesthesia.
But I woke up in this dark haze with a weird feeling in the right side of my neck because of an IV (also a new one for me) was there and a searing pain in my abdomen that I’ve now grown accustomed to having five surgeries involving my guy. When you start to hear these voices “We can’t give him pain meds because he lost blood and his blood pressure is 94 over 50,” you start to wonder what the fuck happened in that operating area and you hope you’re not dying.
But luckily my parents soon arrived and I asked if everything went well and I was reassured it went extremely well, albeit two hours or so longer than expected. And the answer to why that was honestly threw me off guard.
Dr. Remzi performs complicated colorectal surgeries on people that come from all across the country just for him to get them fixed. And sometimes he posts about it on Twitter. Part of me wanted to see him describe what he did so I could retweet it and freak everyone out for a second.
But he never tweeted about mine, I soon found out, because I was one of — if not the most — complicated surgery he’s ever performed. A good portion of my colon was, in his words, cement. Now, I did not attend medical school and didn’t even do well enough in AP Biology freshman year of high school, but I knew that couldn’t be a good thing. He essentially reconstructed my entire colon just to get things back to normal. I’ve had some weird things happen but this was foreign territory for me.
It was a lot to process and I didn’t know how to feel about having this done, but in a sense it put me at ease because it validated how shitty I’d felt for so long. I cried in some sort of mixture of pain, sadness and relief. But I had hope that things would get better. And after I got another blood transfusion through my neck and could finally get pain medication, things slowly improved.
The nurses on the 10th floor in the Kimmel Pavilion know me too well at this point and saw my name on the docket and legitimately saved me a corner room with a view of the Empire State Building. How cool is that? They’re the absolute best.
In the following days my gut started to feel better and I was on solids and tolerating them much quicker than I usually do. My family would bring me in sushi and I had friends visit. Honestly the only issue this time around was this urinary/prostate inflammation that I’m still trying to get over, so I’ll consider this a win. Each day my stomach felt better and the pain in my lower-end that had bothered me for nearly a year evaporated.
This is what progress feels like.
In last couple of weeks, I’ve checked in with doctors and surgical team and everything is moving in the right direction. There’s a plan in place to keep me healthy. I’ve come to terms my ileostomy is probably the thing that keeps me the healthiest and allows me to be functioning human being. It’s not what anyone wants at this age, but I have no intentions to attempt another reversal soon and it’s wonderful my team is giving me zero pressure to change my mind.
If you’ve read this far into both blogs I think it goes without saying why this was a year that brought me to the edge and at times felt like it would never have good things. I had plenty of personal and professional goals and didn’t think I accomplished much.
But there were plenty of positives. I got a feature published in a magazine. I still got to cover baseball every day and write some fun stories. I finally got to break out my passport and have a great time in Toronto. I had some of my best friends walk around the city with me to get pizza to celebrate my birthday. I went back to Montauk and had my first lobster roll, which I somehow never indulged during four years of school in Boston. And yes, I got me free Doritos Locos tacos from Taco Bell during the World Series.
This year sucked but it was also great. It made me thankful for the little things, like when you can enjoy a small meal. Or get out of the house and not think about the disease that’s consumed you for over a decade.
Most importantly, I am grateful for all the things my family, friends and support system have done for me. With all the visits and texts and calls I couldn’t have made it through the last few months. I’ve made so many new friends this year, especially in the IBD community, that have become such important people that I can rely on. For that, I will be forever thankful. I wish it didn’t take two surgeries, a few infections and a couple of abscesses to get to this point, but here we are.
I ended the last post with how one day I thought maybe I’d achieve some semblance of good health. And you know what, that might never happen. There’s a good chance I have Crohn’s until the day I die and have plenty of stomach aches and bathroom trips along the way. It’s not going to be perfect.
But for now, for really the first time in a long time, I have hope for a better long-term outlook. I’ll gladly take it.