If you had to name the single most embarrassing thing about spinal cord injury, it would have to be having a bowel accident. Much of the embarrassment probably goes back to childhood. One of our first tasks in life is learning to use the toilet — we are praised for learning to use it, even proud of it, but at the same time we are taught that we shouldn’t talk about bodily functions. This may explain why bowel accidents tend to bring a sense of shame and embarrassment. Unfortunately, for most wheelers with SCI, you can do everything right and still have a problem. The question isn’t if you are going to have an accident, but when.
In the group of wheelers I’m fortunate to call friends, we get a lot of laughs in sharing our most embarrassing bowel accident stories, complete with shorthand for various types of accidents. For instance, a major blowout is referred to as DEFCON 1 (military-speak for “nuclear war is imminent”). And a favorite catch-phrase is “Are farts supposed to be lumpy?” Being able to laugh about this with other wheelers helps to diminish the embarrassment and makes an inevitable blowout tolerable. It may seem like a disastrous DEFCON 1 is the end of the world at the time, but knowing that the story can eventually bring uproarious laughter to good friends is the proverbial light at the end of the … ah, tunnel.
In hopes of easing embarrassment, I offer some of my better blowout stories, as well as ideas on how to lessen the chances of having to endure a blowout of your own.
In the late ’90s — in my 15th year as a T10 para — I was pushing up the super steep sidewalk to my back door when I heard a noise that could only mean one thing — a blowout of major proportions. With the next push, the mess blew out of the back of my pants and chair and spilled onto the pavement. After two hours of cleaning myself up, I returned to the backyard to clean the sidewalk, but there was nothing there. Weird, where did it go? That evening, “Einstein,” my German shepherd, became extremely ill and started puking all over the backyard. Ahaaa! Mystery solved. But he was extremely ill for about two days. I was so worried that my shit might end up killing my service dog that I was too embarrassed to tell my wife why he was so sick. Fortunately he got better — but it took me years to tell the whole story.
There is nothing worse than having a blowout on a plane, or as we refer to it, “The Mile High Club.” Back in the late ’90s, “Stan,” a T9 para in his mid-40s, got the opportunity to compete in a handcycle race in Havana, Cuba. After an amazing few days of unique sights, people, food, and rum, he came down with a stomach bug and wasn’t feeling quite right. The morning of his departure he did a bowel program, and it seemed everything blasted out. He boarded his flight from Havana to Miami. Going through customs in Miami he started feeling ill again.
The next leg of the flight was from Miami to a stopover at Dulles in Washington, D.C., then across the country to his home in Denver. As the plane lifted off the tarmac in Miami, the first wave of diarrhea hit, followed by another and another. There was nothing he could do but sit, trapped and miserable in the growing mess. “By the time we landed in Washington, it was stinking really bad,” he recalls. “Everybody got off the flight and a flight attendant came up and said, in a matter of fact way, ‘We gotta help get you off of this flight.’” They brought him his chair and his luggage and he went into the bathroom, got rid of the pants he had on, got cleaned up as best he could and came back to the plane for the final leg to Denver.
“I was the last person on the plane, everybody else was waiting for me. I was assigned a different seat — my previous seat was no longer there! It was so bad they had unbolted and removed it! I got seated and made it home. An embarrassing story, but Cuba was an amazing adventure.”
Managing the Unmanageable
“We get more calls on SCI bowel control and management, and also bladder, than anything else,” says Diedre Bricker, RN, of Craig Hospital’s SCI Nurse Advice Line. Bricker offers sound advice on bowel management, advice similar to what many veteran wheelers suggest.
The most important step to avoid accidents is to develop a bowel program and stick to it, says Bricker. Finding a BP that works varies greatly from person to person and takes a lot of fine-tuning. Some people schedule a BP every two days, while others need to do it every morning and evening. Drinking a cup of warm liquid — coffee or tea one-half hour before a BP — helps by starting peristalsis — muscle contractions in the digestive tract that help get stool moving. Bricker adds that if things are really running slow, warm prune juice is a natural laxative and really helps.
One of the most important things to do in terms of regulating bowels is to eat plenty of fiber and drink ample water. Fiber is great stuff when it comes to digestion — it helps reduce incidence of constipation and diarrhea and helps stool move through the intestines by absorbing water into the digestive tract, which increases the weight and bulk of stool. At Craig they recommend 20-25 grams of fiber a day. The easiest and best form of fiber is found in fruit, vegetables and whole grains. Check the list on the side of food boxes to see how much fiber there is per serving.
For Dave Moore, 51, in his 32nd year as a T3 para, high fiber breakfast cereals are important. “I eat a nice bowl of fruit, nuts and granola in the morning and that keeps me regular,” says Moore. Bricker agrees with Moore’s strategy and says another way to get fiber in your diet is to add psyllium or hydro-mucilloid fiber supplements like Metamucil or Citrucel — but be sure to increase your fluid intake, especially if you are adding psyllium, as it absorbs a lot of fluid.
What about activity? Frequent activity is important for regularity. The more the better. Ideally, activity should include cardiovascular exercise, like handcycling, swimming or pushing your chair.
But what if your level of injury precludes being physically active? Bricker says in this situation, activity is just as important. Getting up in your chair, talking with a friend, going out for coffee, doing a hobby, going to school or work — all help to maintain regularity.
If digestion is moving too fast and you need to slow it down or bulk up stool that is too loose, Bricker suggests the “BRAT” diet—bananas, white rice, applesauce, and tea. Eric Stampfli, 54, in his 36th year as a T11 para, says if you need to stop things up, eat cheese and non-greasy protein — cheese is a natural binder. If you are lactose intolerant, non-whole wheat pasta is also a great binder.
“When my digestion starts to fall apart, especially if it seems like I’m getting the runs, I go on a three-day diet of nothing but clear chicken broth and water. That usually brings things back into balance,” advises Steve Ackerman, 54, in his 25th year as a T9 para.
Wheelers I spoke with all agree that when you need to get stopped up fast, especially if you are traveling, the emergency “nuclear option” is to take Imodium. If it stops you up for too long, eating raisins and or prunes — along with drinking plenty of water — will get things moving and help you restore balance.
More Tips on Regularity
Many wheelers report that eating foods with active live cultures of “good microbes” — also known as probiotics — like yogurt, soy yogurt and Kefir, help their digestion and BP stay on track. Bricker says this is especially important if you are taking a course of antibiotics, which kill off natural bacteria in the intestines needed for digestion. This wreaks havoc on a BP, sometimes causing constipation, other times diarrhea. Probiotics help restore balance in the gut.
A word on air travel — it is a good idea to do a thorough BP before getting on an airplane. Cabin pressure in an airplane rises to 8,000 feet, and when it does, any gas in your gut will expand like a balloon, and can push anything in front of it out of the way.
Some wheelers say that for piece of mind on long flights, as well as times when their stomach is acting up, wearing an adult diaper like Depends is a great option. For a more minimalist approach, male incontinent guards have an adhesive strip that, properly placed in underwear, provides just enough protection to absorb minor blowouts — piece of mind on long flights, drives, or wilderness adventures.
Experienced wheelers advise traveling with an emergency blowout kit, including gloves, plastic bag or two, handi-wipes and a change of pants and underwear. Like Murphy’s law, if you have it, you probably won’t need it.
Even when you do everything right, a blowout can creep up on you. When it does, it’s time to control collateral damage. Candace Cable, 58, in her 37th year as a T9-10 para, advises putting a
plastic or paper bag on seats or your chair cushion to prevent seepage. And don’t forget to carry a blowout kit with you. “The only way to really clean off is to get into a bathtub or shower, or if nothing else, use a garden hose. Take everything off, throw away the underwear and start cleaning,” she says.
One of the most difficult parts of cleaning up after a full blowout is ridding the smell from clothing and cushion, car seats, etc. A great solution for this is a product called Sink the Stink. Designed to get rid of odor in surfing and scuba diving wetsuits, it is a non-toxic solution that you mix with water, then soak the smelly items in and hang dry. Bacteria in the solution targets and eats the bacteria responsible for odor. I’ve used it on the nastiest smells — one soak, dry, and no odor. Nature’s Miracle is another effective product for killing the smell.
When it comes do dealing with a DEF-CON 1 situation, Topher Downham, a 43-year-old world traveler and adventurer in his 16th year as a C6-7 quad, offers great advice. “When a shit storm hits and there is crap everywhere and I’m trying to clean stuff up, I deal with it by not worrying what’s going to happen later on. Just deal with one thing at a time and focus on being in the moment. That allows me to let go of embarrassment and almost get into a Zen state of mind,” he chuckles. “The Tao of Poo.”
In terms of adaptation, ingenuity, and perseverance, here is another amazing blowout story. This one comes from 42-year-old “RacerX,” in his 28th year as a T11 para: A course of antibiotics had left him constipated for five days when he embarked on a six-hour drive with his wife and daughter to attend his sister-in-law’s wedding. “After about four hours on the road, I’m starting to sweat, and we pull into this tiny old gas station with one rundown bathroom and the door doesn’t lock,” he says. “I got on the toilet just in time and took a huge dump. But I’m still feeling something is in there. In the meantime truckers are knocking on the door and opening it and impatiently waiting. After about 10 minutes, I get in my chair, and as I’m pulling up my pants, I feel this huge release — I’m in total denial! I had managed to shit on my pants, underwear, back of my chair and the floor, and a trucker is banging on the door.”
After wiping up the floor with toilet paper, he left the restroom smelling like a pig pen. He had his wife buy a bottle of water, paper towels and hand sanitizer. “I go into the back of the minivan and put down floor mats because I know I’m going to get shit everywhere,” he says. “I’m in the back, it’s like 110 degrees and I change my pants and clean myself up the best I can when my stomach starts kicking again! No way can I make it back to the toilet. So I grab my dog’s stainless steel bowl and roll onto it just in time — and it worked! At this point, I’m laughing because I’ve filled the entire bowl to the brim, but I’m safe. Suddenly I feel another alien kicking in my stomach. I grab a fast food cup of ice tea, drink it down and put it over my butt just in time. I had to set the cup inside my shoe so it didn’t tip over — by this point it was pure comedy.”
Hold on, there’s more.
He put everything in a plastic bag, got dressed and started driving. “Within five minutes I start sweating again and see a sign that says, ‘Rest stop, eight miles, so I floor it. Now I’m doing like 85 mph and I don’t care if I get pulled over,” he says. “So we get there, I hop in my chair and race into this big beautiful restroom with soap, hot water and accessible stall. At this point I know I can make it! I pull my pants down and during the transfer to the toilet, I shit on my chair, the side of the toilet and my pants. So I clean up once again and roll back to the van half naked, put my wife’s sweat pants on and drive the last hour to the hotel.
“As we pull up, I see my wife’s entire family and all of her relatives have flown in from Ireland and are there to greet us. I jump out of the car and wheel straight to the room and immerse myself in the tub.”
The final irony is RacerX’s van was designated to transport everybody for the event, and even though he cleaned the van, it still smelled like shit the whole weekend. “It was the most mortified I’d ever been. But what can you do?” he laughs.
• Craig Hospital Bowel Care Education Module, www.craighospital.org. Click on SCI & TBI Health Info on left side of page and click on Education Modules. Then click on Bowel Care.
• Craig SCI Nurse Advice Line, 800/247-0257.
• Probiotics Overview, www.webmd.com/digestive-disorders/tc/probiotics-topic-overview
• PVA Neurogenic Bowel: What You Should Know,www.pva.org. Click on What We Do, scroll down and click on Research & Education. Under Research and Education click Read More in the Publications box. Under Electronic Publications Online Store click on Consumer Guides. Click on Add to Cart under “Neurogenic Bowel: What You Should Know.”
• National Spinal Cord Injury Association, www.spinalcord.org. Click on Resource Center, and then on Health & Wellness After SCI. Then on Bowel Care. A number of resources will appear.
• Nature’s Miracle is available in most stores that sell pet products.
• Sink the Stink, www.sinkthestink.com. This product is available in many stores that sell water sports products, and also online.