Getting back to ‘normal’ and dealing with an unprecedented situation
After my last post, it felt like I had hit a turning point, and things were finally back on an upswing. Things, as they tend to do if you have a chronic illness, can hit a wall in a flash.
This time, though, I was experiencing symptoms that were new — even for me — and honestly just felt embarrassing to talk about openly. That’s why I’ve waited so long to even get back to writing here. But this always feels like a cathartic project and acts a way to update everyone on what’s been going on in my life.
I alluded to it in my previous post, but I had been dealing with some urinary symptoms post-bowel resection that were pestering me every day but seemed to slowly improve over time.
Then December hit.
Right when things seemed to be getting back on track, I had a work shift at night and had to use the bathroom. But as soon as I tried to pee (yes, this is why I was embarrassed to talk about it), I just… couldn’t. I knew I had to go but nothing, not even a drop, would come out. And this didn’t just happen once, it happened for over three hours and let me tell you, it hurts more than you can imagine.
I rushed to NYU to see what was wrong and eventually started going again. So everything seemed OK and it appeared as if I encountered a UTI with all my prostate issues and that pelvic floor dysfunction was the sole cause of this hiccup. Fair enough, we’ll get past it.
But then the end of December hit and I was back in the ER. And then two weeks later in January was back in the same place. My back started to hurt, I was urinating only blood and my left kidney was swollen. So, the urology team wanted to put in a catheter in so I could relieve the pressure off my kidney and not cause further problems. One try, it didn’t fit and I winced. A second attempt hurt even more. By the fifth go at this to get this catheter in, it was clear something was wrong and I was in tears.
After a quick cystoscopy in the ER, it was finally determined what was causing all of these urinary issues. I had a urethral stricture and they would need to surgically place a catheter directly into my bladder that day and then do a reconstruction in about a month and a half later to allow me to urinate normally again. It was likely a buildup of scar tissue from all the previous procedures I’d had done over the last few years.
It was a lot to process and truly felt just like uncharted waters for me, even after dealing with a slew of issues with Crohn’s. I was scared and at times down right depressed about this. I felt like a prisoner in my own house and my symptoms would never be relieved. I missed out on just little things and mostly remained on my couch. It felt life was passing me by again and this wasn’t fair. In short, it fucking sucked.
That’s not to add in the times (read: twice) that my temporary catheter crystallized inside me and forced me to have four separate ER visits to alleviate my symptoms. Imagine getting stabbed in your abdomen and there’s nothing you can do about it. Even putting pants on put pressure on my bladder and pushed me to tears. It was sobering and I just didn’t trust the process of this whole plan.
When I went in on Feb. 21 for my reconstruction surgery, I think my family and friends were more hopeful than I was. I was trying to remain positive , but after everything that’s happened over the last 12 months, I was skeptical. This was my fourth surgery in a year and it felt like a rotating cycle of being on the operating table, recovery and then having a setback.
It gets to you mentally after a while that you’re never going to get your life back. You’re a slave to your failing health and are forced to deal with the reality that you have a disability.
But the surgery came and went and I woke up to find out they had removed a one-inch stricture (run-of-the-mill, according to my surgeon). I’d have two catheters for a few weeks and then find out if things healed. When the first one was removed the first week in March and we did the urinary void trial I was obviously anxious and didn’t think anything would happen. But then, some magic happened.
Yep, it was the best it had been since before my resection in October and I was in disbelief. I cried.
You don’t realize just how many things you take for granted until there’s an issue or it’s gone. It caused me nightmares but now it truly felt like we had good news. On the trip home, I broke down and cried a few more times. It just didn’t feel real and I never thought this would happen again. This whole process cost me a real chance with someone I was dating. It cost me days at work and time with friends and family. But now, we finally had a good day.
And earlier this week, I had the last catheter removed and the urgency that was making me run to the bathroom has since stopped. I truly feel as ‘normal’ as I can with my Crohn’s and an ilesotomy. If this is how life is, I can very much carve out something positive from this and continue to trudge forward.
But having my own good news during our current crisis feels bittersweet. Living in a pandemic feels as if we’re living in an apocalyptic horror movie. But this is real and it’s terrifying for us all. I have Crohn’s and so does my brother. My mom’s had breast cancer. I feel so vulnerable and scared, just like the rest of us.
I hope this passes sooner rather than later and that we all take the proper precautions. This is a dangerous time. We need to follow proper guidelines and stay home as much as possible.
I want things to come back to ‘normal.’ I want sports back. I want the uncertainty gone.
And I want to remain positive. I hope we all can.