Surviving Colorectal Cancer, Part 26
Will I Always Need to Wear a Diaper When I’m Away From Home? Maybe.
I’m thankful that my colon and rectum have recovered after my colostomy reversal surgery in late May of 2023. They are working well enough and I almost never suffer from fecal incontinence.
Almost is the keyword in that sentence. That’s because, sometimes, the urge to go happens at unforeseen moments.
Sometimes, it happens during a two-hour medical appointment including travel time. Or a 90-minute meal in a restaurant with 45 minutes of travel time to and from the restaurant. And more often, at a three-hour family gathering on weekends in the home of somebody from Maria’s family only 15 minutes away from home.
Whenever and wherever it happens, I’m always thankful that I’m wearing a disposable diaper. I always have another one in my diaper bag along with flushable baby wipes, a plastic bag to dispose of the dirty diaper, and a small bottle of hand sanitizer.
To clarify, the only times I wear a diaper are when I’m going to be away from home for an hour or more. At home, I wear an absorbent pad inside my briefs to cope with minor leakage, and I can get to the bathroom quickly before pooping in my pants.
Family members and doctors have become used to seeing me arrive with my small stylish DKNY backpack. Strangers at restaurants don’t see anything unusual because sometimes a few others also have small backpacks, likely for different reasons.
Wearing an adult diaper when I’m away from the house has become a vital part of my cancer recovery. That’s because fecal incontinence is among the common side effects after colorectal surgery. The Colorectal Cancer Alliance (CCA) website has a detailed discussion of Low Anterior Resection Syndrome, including recommending that patients have a “survival pack” like my diaper bag.
Fortunately, my surgeon needed to remove only the upper part of my rectum (plus my entire Sigmoid colon), which may make it easier to regain full bowel control at some point. Until then, I’m experiencing what the CCA refers to as “clustering.” In plain language that means I sometimes need to poop several times within a few hours.
I want to be candid to help you understand my experience. Without divulging too many details, let me tell you what it’s like to cope with the urgent need to go while away from home. Other colorectal cancer patients may have different experiences.
The first indication that I need to go usually comes from passing a little gas. I try to control it but sometimes I can’t. Usually, it’s silent. But it’s not odorless. I try to minimize the risk by avoiding cruciferous vegetables and other gas-causing foods on a list from my healthcare group back in San Diego.
During medical appointments, I apologize for the gas. My doctors always say a little gas is normal, and they shrug it off. During family gatherings, I don’t say anything and other people remain silent. Maria looks at me because she knows what’s happening. She gives me the same look at restaurants.
I know the gas signals a need to get to a toilet as soon as possible because a little poop may be coming next. Nobody, including me, likes to smell a dirty diaper. So, I excuse myself from wherever I’m sitting.
Sometimes, I feel a little poop emerging before I can get to the toilet. That’s especially true in restaurants that have bathrooms accommodating only one person at a time. If I have to wait my turn, I tighten my sphincter muscle and try to hold on until the bathroom is available.
If that isn’t successful, once inside I pull down my pants and diaper and sit on the toilet seat to begin cleaning up. I tear the top of the dirty diaper on both sides so I can remove it without taking off my pants and shoes. I bag the dirty diaper, wipe my butt with toilet paper, and clean it with baby wipes. It’s much like when I changed diapers for my three sons.
Then, I take off my shoes and pants, pull on a fresh diaper, and put on my pants and shoes. With a fresh diaper, I’m finished in a few minutes. It’s a lot easier if the restaurant bathroom has a handicapped stall with lots of room.
After washing my hands thoroughly at the sink, I’m ready to rejoin Maria and others. After we return home, I use a bathroom bidet wand to remove any remaining debris from my anus.
Maria almost always drives us wherever we go, and if the urge to go happens in the car I try to hold it until we get home. Sometimes, I can’t hold it and I have to sit in a dirty diaper for a while. It doesn’t happen often. She understands, doesn’t complain, and opens her window for a little fresh air. I open my window too.
Let me say right here that I’m not complaining about wearing a diaper. It’s a whole lot more convenient than the colostomy bag I had 24/7 for three months before the reversal surgery.
With the colostomy bag, I NEVER wanted to leave the house except for medical appointments. I became a hermit because emptying the bag about once an hour was something I didn’t want to attempt away from home. And I didn’t want to risk the bag leaking liquid feces, which happened at least once a week.
Now, with my diaper and diaper bag supplies, I’m emerging from my hermit mode to enjoy family gatherings and restaurant meals.
Even with my diaper, I don’t want to attend public functions. I recently turned down free tickets to a nighttime performance of the local Philharmonic Orchestra. And there is no way I would attempt to attend a sporting event with a large crowd and waiting lines at the bathrooms. I don’t even want to attend the monthly two-hour meetings of my book club because the venue is small and has only one bathroom.
I definitely plan to wear a diaper when I fly back to the USA to visit my three sons and their families later this year. The airports will have spacious bathrooms to accommodate me, but I’m very nervous about using the tiny toilets on two planes during seven hours of flying. I hope I can manage, including taking off my pants and shoes and putting them on again in the cramped space.
The rental car facility will have spacious restrooms onsite. But finding a restroom quickly while we’re driving an hour to our final destination may be challenging. The best solution on the Interstate will be to take the next exit to find a gasoline station and hope there is no waiting line.
Maybe I worry too much. I plan to take a prescription Loperamida pill each day to help control incontinence. But I’ll pack two diapers in my diaper bag, just in case, and several others in my suitcase for the two-week trip.
Here’s some ironic perspective — My youngest grandchild back East became potty trained this spring and the family used WhatsApp to celebrate his milestone. Now, I’m the only one in the family who wears a diaper, albeit infrequently.
I’m hoping pelvic floor muscle exercises will enable me to regain enough control to get out of diapers during the coming year, which will be my second year following colostomy reversal surgery in May of 2023. However, the National Library of Medicine recently published a lengthy systematic review of scientific literature that suggested little or no efficacy for the exercises.
Maybe I’ll need to wear a diaper for the rest of my life when I’m away from home. I’m okay with that.
I’m alive, and that’s the most important thing.
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About me: In June of 2022, at age 78, I was diagnosed with Stage IIIc colorectal cancer. After five months of aggressive chemotherapy and radiation, I had successful surgery in January of 2023 to remove the tumor followed by successful surgery in May to reverse my colostomy.
Surviving advanced-stage colorectal cancer was like starting a new life. My oncologist and my wife both urged me to write about my experience as a catharsis and to encourage people to have colon cancer screenings. I began journaling every day, and to celebrate my 80th birthday in October of 2023 I began posting articles almost every week on Medium.
I hope my articles will motivate people to have thorough colon cancer screening starting in their 40s and continuing past 75 and also help other colorectal cancer patients deal with everyday life while trying to survive five years or more.
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