This post was originally published on my personal blog at chrischelli.com on December 5, 2023, about six weeks after my surgery. What follows is exactly what I wrote at the time as I was learning the early realities of life with a urostomy. I resisted the urge to update it with what I know now because I felt it was important to preserve the experience as it was happening.
While I was working at an event in a small Texas town over the weekend, I felt a tap on my shoulder. When I turned, I saw our oncologist smiling at me. We were about 50 miles away from the clinic where we normally see her. After asking me what I was doing out there (and asking where my wife was) she emphasized how happy she was to see me out, on my feet, walking around and working.
Exactly six weeks earlier, I was just getting home from the hospital following the radical cystectomy that removed my bladder and over 90 lymph nodes in an effort to evict as much cancer as possible from my body and to prevent potential recurrences. Six weeks that had been spent recovering and learning new routines.
As you would expect, there was quite a bit of discomfort early on. How could there not be when they slice you open just shy of 10 inches from your belly button to your groin? It wasn’t that bad though. It barley hurt at all if I didn’t move.
Early on, it occurred to me that we were very well prepared for this recovery. For one thing, I’d had abdominal surgery for a hernia repair in April of 2021. So, there were a few things I was able to remember from that recovery that helped. Then there was “bag draining.” I did end up opting for a urostomy – a collection bag covering a stoma on my belly to capture and dispose of the urine produced by my body. This was nothing new to me as I had had nephrostomy tubes coming out of my lower back that drained into bags since February to help my kidneys. Those tubes were removed during the surgery, but the concept was still the same. The third big thing was that I had to listen to my body and not try to do too much. 6 months of chemotherapy had coached me to do that. All in all, I had trained for this. Unintentionally, but I was very prepared.
I was encouraged by the doctors and nurses to get up and walk as much as possible. I stayed in the house for the first week or so but started walking around the neighborhood at the two-week mark. Somewhere around then I also stopped taking pain medications. That was the condition to be able to drive, which I started doing at 3 weeks. Five weeks out was Thanksgiving and my wife and I took off for a few days with our travel trailer. I wasn’t cleared for doing any heavy lifting yet, and she wouldn’t let me even when we had to change a tire, but it was great to be out of the house.
Last week we saw the surgeon at the six-week mark, and I was cleared for “normal” activity. Obviously, that will be a new normal. I can exercise, but I won’t be entering any power lifting competitions. I can work events, but 18-hour days are not in the cards for me. There is a mental aspect to deal with, knowing that I must manage myself differently, but it’s a small price to pay to get to keep moving forward.
The pathology from all the parts they took out came in at the four-week mark. While the bladder showed no active cancer cells, 16 of the lymph nodes did. On one hand, it’s good that they are no longer inside me capable of spreading. On the other hand, that means treatment must continue. We don’t know exactly what that entails yet. At the last oncologist appointment, we discussed more chemotherapy and a referral to a radiation oncologist. The last thing we were told is that they are still undecided and seeking out more expert opinions because our case is on the extremely complex side. My interpretation is that we’re not following any know trajectories. Which isn’t surprising. I’ve always tended to make things more complex than they need to be.
And with all of that being said, I remain completely unfazed by any of it. As I’ve said since the beginning, tell me where I need to be, when I need to be there, and how long it will take (only so I can be prepared for how to pass the time). It’s just another task that must be completed. I’ve received a lot of positive feedback regarding my mindset and attitude. While I’m aware that those are choices I make, it doesn’t really feel like there are any other viable options.
On that note, let’s talk about the early stages of urostomy life. When your body drains liquid to a bag adhered to your stomach, there is no way you are making it through without incidents. The first one happened while still in the hospital. They had me walking in the hallway – because they wanted me moving. The urostomy bag attached to my abdomen will hold about a half liter of fluid. So to keep from having to drain it all the time, they had a larger collection bag attached to it. The walk ended abruptly when the larger bag disconnected and spilled all over the floor. Good thing I had packed extra hospital socks.
The second one happened the night we got home from the hospital. We were just watching TV when I felt a trickle and then noticed my shirt was wet. It seemed there was a breach in the top part of the seal over the stoma where the liquid came out of. We had practiced changing the bag in the hospital but hadn’t thought we’d have to do it so soon.
We had a good run after that with no issues. But on Thanksgiving night, as I stood up from sitting in what I can only describe as a bucket type chair, I felt the seal give out. Fortunately, we were close to the travel trailer and had everything needed to deal with the accident.
This incident reminded me that I needed to take supplies with me whenever I went out as you never know when there will be an issue. The following Tuesday I was at a lunch meeting when it happened again. I caught it fairly quickly and changed out the seal and bag in the restroom (I’m now thankful for baby changing stations inside extra large disability stalls). Unfortunately, I must have rushed and not put it on properly. I was leaking again within 20 minutes and had to excuse myself to return home.
The very next day (last Wednesday) was the most eventful yet. We had an appointment with the surgeon. For these visits, we travel 40 minutes to an hour (depending on traffic) into Houston to the Texas Medical Center. When we arrived, I noticed a dampness as we got out of the car. Upon further examination, it was worse than I had initially thought. When I got to the restroom in the waiting area, I noticed the bag was torn right above the spout used to empty it. This was not good. We had supplies to change it out, but also knew the doctor would want to look at everything without the bag on. So we essentially wrapped the tear in a towel and waited. Of course, he was running behind and it took nearly an hour to see us. The scene from the movie Talladega Nights where Ricky Bobby’s son claims “I’m still wearing my dirty pee pants” was brought up more than once while we waited.
We got the bag changed out after he looked at everything leaving us with just two problems. We were starving (it was lunchtime) and my clothes were wet. We solved the second problem with a trip to a nearby Academy. Fun fact: Academy doesn’t sell regular Fruit of the Loom or Hanes underwear. They only have “fancy” briefs. So now I have 3 pairs of satiny boxer briefs. Yes, they are comfortable.
Once in clean, dry clothes, we grabbed some lunch to cap an eventful morning/early afternoon jam packed with new life lessons. Among other things, we learned:
- We should never leave home without ostomy supplies.
- We should also never leave home without a full change of clothes.
- All pants I wear should be about 2-4 inches too big in the waist to not constrict the bag (as it drapes over my waist).
- With the above, belts are no longer an option. In other words, I’ve graduated to suspenders.
- It’s important to find the light and humor in all of these situations as the alternative serves no good purpose.
So here I am, holding my chalkboard sign that says, “It has been 5 days since I’ve leaked on my clothes.” I’m hoping that number continues to go up. But I know that when I cross it out and write in a zero, that it will be okay and that we’ll be prepared for it. Just like we’re prepared for almost anything else they throw at u
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