It freaks many people out, but to some spinal cord injury survivors, a colostomy is a perfectly reasonable way to manage those cranky bowels. In fact, in one study, nearly three-quarters of the spinal cord injury survivors with colostomies reported an improved quality of life.
Just What is a Colostomy?
A colostomy is a surgically-created hole leading out of your colon. Your colon - or large intestine - is about four to six feet long. It starts where your small intestine ends, travels up the lower right part of your abdomen, then goes across your abdomen just beneath your stomach, where it’s called the transverse colon. Finally, on the left side of your abdomen, your colon heads downward (called the descending colon) until it finally connects with your rectum. As you probably already know, your colon aids in the job of digesting, solidifying unused food, and turning it into stool. What a colostomy does is create a new hole, so that stool can leave the body somewhere along its path through the colon, but before it reaches the rectum. Typically, a bag is placed over the new hole, on the outside of your abdomen, to collect whatever comes its way.
What Good Does a Colostomy Do?
In some people recovering from pressure sores, the risk of irritating or infecting the sore during an ordinary bowel program is so high that a temporary colostomy is needed. And, some other SCI survivors have found that a colostomy, used long-term, makes their bowel management a lot less complicated and time consuming.
George, for example, thinks that it’s a lot easier. With C6 quadriplegia, he doesn’t have complete hand function, so in his pre-colostomy days, he needed help with most of his bowel program including transfers, assistance during the program, and clean up. Now, with the colostomy, he can perform almost all of his new bowel program himself. And, he and his wife have found that the traveling is a lot easier for them.
Jim was one of those people who needed a temporary colostomy while recovering from a pressure sore. However, he liked it so much, he kept it. "I found it so convenient, I wished I’d gotten one ten years earlier," he says. "With my colostomy, I don’t have to worry about involuntaries" (meaning, bowel accidents, diarrhea, or having stool come out at the wrong time).
Where Is the Colostomy Placed?
The colostomy - in other words, the new hole from your intestine to your skin - can be placed in various locations along your colon. Many colostomies in people who don’t have spinal cord injuries are done because of tumors, diseases, or damage in the colon. For them, the actual location of the new hole is determined by the problem – the hole needs to be placed before, or "upstream from" the troublesome area, so it can be bypassed. But this isn’t the case in people with SCIs who choose colostomies for more functional reasons. Where’s the best place for their new openings to be placed? There seems to be difference of opinion. Some health care professionals believe that a colostomy along the transverse colon is less prone to constipation and easier to manage. However, at least one study showed that colostomies in this area also may be more susceptible to a potentially serious complication - prolapse. A prolapse is a sagging, protrusion, or collapse of the colostomy opening itself. Because of this debate, it’s important to consult a colostomy specialist, such as an enterostomal therapy nurse, for best placement.
It’s also possible that people with transverse colostomies have more liquid stools. This makes clean up more complicated for those with limited hand function, and may create odor problems. Is stool more solid if the colostomy is somewhere else? George thinks so; his colostomy happens to be on the descending colon.
The day-to-day supplies to manage a colostomy may cost more than for an ordinary bowel program - and, Medicare, Medicaid, and some insurance companies may not want to cover them. Still, a colostomy might be worth it in the long run, in terms of requiring less attendant care and less of your time. The longest it takes George, including his irrigation, is 45 minutes to an hour - and, he typically is able to do other things during that time. Those who don’t irrigate need even less time. One study of veterans with spinal cord injury and colostomies found that after getting a colostomy, they spent seven fewer hours each week on their bowel care.
The Downsides of Colostomies
Besides having to undergo a complicated and possibly risky surgical procedure, there’s also the recovery that follows it and the training needed to manage it. And, as mentioned earlier, colostomy supplies can be costly, and there’s no guarantee that your insurance company will pay for them.
There also can be problems with odor, and a colostomy does not solve constipation problems. If your bowels were slow-moving due to constipation before getting a colostomy, they’ll be slow-moving afterwards as well. The colostomy site itself can have problems. In one study, despite the fact that those who received colostomies reported improved quality-of-life, slightly more than one-fourth of the subjects had problems with their skin or the hole itself.
Colostomies may require attention to your diet. The same things that can cause embarrassing gas, like beans or broccoli, can actually pop the colostomy bag right off. Although that may not harm the colostomy itself, it can lead to an embarrassing mess and odor.
Finally, some people find that health care providers can be intimidated by a colostomy. When George was in the hospital, his wife found that the staff nurses seemed relieved when she took care of his colostomy needs herself. For many people – even health care professionals – a colostomy is just a bit too odd or too radical to handle. Still, many SCI survivors report that their home health nurses and aids are generally willing to learn about colostomy care.
Could This Be the Thing for You?
Getting a colostomy is not something you can just jump into. In the past, colostomies were generally reserved for people with serious medical conditions affecting their bowels. In fact, colostomies are still used mostly just for people who have exhausted other options; they’re pretty radical procedures. However, they seem to be becoming a bit more accepted. Physicians and other rehabilitation professionals who work with SCI survivors are paying more attention to quality of life issues. They understand that for some survivors, life unfairly revolves around their bowels. Everyone has heard stories about people who have uncontrollable diarrhea, or whose bowel programs take four and five hours. There are also stories about SCI survivors with skin breakdowns that can’t be healed, or untreatable impaction, or severe autonomic hyperreflexia during digital stimulation.
If you’re thinking about a colostomy, talk to your family and friends. What do they think of the idea? Track down other SCI survivors who have had colostomies and get their opinions. If you’re still interested, talk with a rehabilitation doctor who treats a lot of people with spinal cord injuries. Hopefully this experience will give him or her the perspective to know where your issues fall on that bowel problem spectrum. Your physician is not likely to support a colostomy until other medical options are exhausted, but, if he or she agrees that a colostomy may be an option worth exploring, you’ll have an advocate as you seek out a surgeon to discuss things with you in more detail.
This is part of a library of educational brochures developed by Craig Hospital with a federal grant titled, "Marketing Health Promotion, Wellness, and Risk Information for Spinal Cord Injury Survivors in the Community. The opinions expressed here are not necessarily those of the funding agency, the National Institute on Disability and Rehabilitation Research of the US Department of Education.
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