A Demonstration of True Friendship
After my radical cystectomy (RC), I experienced quite a few complications and spent a significant amount of time in a rehab facility. Due to staffing issues, I could not get regular support from a wound, ostomy, and continence (WOC) nurse, so I was mostly on my own to deal with my new urostomy. I knew from my initial stoma education from my WOC nurse at the hospital when I had my procedure that my stoma would change some as it healed, but the HOW is always unknown since each stoma is as unique as the individual who has it.
What I found while changing my stoma
One day, I was changing my appliance and noticed a spot on the side of my stoma site that looked darker than everywhere else. I tried to get a better look at it, but my body and eyes didn't cooperate with that attempt. I snapped a picture with my cell phone so I could enlarge it. I still needed to find out if it looked like a good or bad change.
Asking a friend for help
At the time, I was an administrative assistant at my local pediatric GI office and was friends with the nurses there; nurses who dealt with stomas and ostomies all the time. I texted one I was particularly close to with the photo I took. She texted back that she was planning on coming to see me the next day and that we'd change my appliance while she visited, and then she would take a close look at my stoma. When she arrived, she brought me a milkshake, and she got out my ostomy supplies. She set herself up, got a pair of gloves, and went to it. While she worked, we visited, and she taught me some tips and tricks for stoma and peristomal skin care. We joked, too. "Now, don't pee on me, Liz," she said before she removed a washcloth from my stoma. "Unfortunately," I responded, "I no longer have control of that!" We both laughed.
What did she think of the spot?
When we finished applying everything, she told me things looked good, but if that spot got darker or larger, I should say something to the clinicians. We continued to talk about other things. I was grateful for the company and the mental distractions. That is until my stomach started to gurgle.
Things they should warn you about
Post-RC, one of the things they don't exactly warn you about is that the small amount of intestines they take to reroute the plumbing is JUST enough to wreak havoc on your digestive system! Especially in the early days!
A potentially embarrassing moment
Suddenly, I felt my stomach bubbling and shifting around. I told her, "You may want to leave soon." "Why?! Do you want me to leave?!" "No, not really, but I'm gonna need to have a bowel movement, and I know they're short-staffed, so it won't be an expedient process to get help in here." "LIZ! I'm a GI nurse! I am not going to let you sit in your excrement! I deal with sh*t all day, and I'll help you use the bathroom! If you're okay with it, I'm okay with it!"
I was a bit embarrassed but knew there was no holding back with the movements happening in my body, so I accepted her help. My dear friend turned off the bed alarms, pulled the curtains, gloved up again, and helped me get on the bedside commode. My rear hit the toilet just in time. She gave me a bit of privacy, and when I was ready, she returned and wiped me. She did a better job than most of the nurses or aides in the rehab facility or hospital. That is true, unconditional, to-the-ends-of-the-earth love and compassion.
How it’s changed how I view my village
That experience and many others during my active treatment helped me learn to ask for and accept help in new and different ways without feeling shame or embarrassment. I am still stubborn to a fault and fiercely independent, but I'm much more humble and grateful for the kindnesses that loved ones show me in some of my most critical times of need. I am so grateful for that friend and many others. I am so grateful for the lessons learned from them as well.
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