Spinal cord injury and cranky bowels go hand and hand. SCI tends to shunt our bowels into the slow lane, which is often at the core of many related problems cited by wheelers. Aging tends to slow them down more. For some that’s enough to cause persistent and significant constipation, long programs, irregularity and unpredictability sufficient to force major surgical action.

A colostomy involves surgically redirecting the colon (large intestine) to a stoma (surgically-created hole) in the abdominal region to allow fecal matter to exit the body and into a bag the user wears for that purpose. This is not some cosmetic or to-be-considered-lightly procedure; a colostomy is usually a major surgery which significantly alters the body and how it performs a very basic and vital task.

Some may have colostomies thrust upon them due to a blockage in the colon. For others, the risk of infection when dealing with skin sores or prior to skin flap surgery is high enough to recommend a preventive colostomy. Unlike most colostomies, the preventative colostomy is usually reversible. Even so, a good number of wheelers come to like the freedom, simplicity and speed colostomies often afford them and choose to keep them.

After 10 years of unpredictable involuntary bowel movements and two-hour bowel programs, complete with blood pressure spikes and painful hemorrhoids, Ricky Harvey decided he’d had enough. Steve Pisano spent seven years dealing with chronic constipation, two to three-hour long programs, hemorrhoids and stressing about skin and invols. Eventually, both decided a colostomy would solve their problems. Now, years later, both wonder why they waited so long.

Despite good dietary habits and adequate hydration, Clara Harris struggled with constipation, hypersensitivity to stimulation and long bowel programs. She spent years finding attendants who could help her with her program without causing undue pain in the process. Injured in ’89, Harris reluctantly chose to have a colostomy last spring.

Pisano says a conversation with a C5-6 colostomate helped him to “wrap my head around getting it. I listened to him, asked questions and learned. He told me he saw it as a step closer to independence. That made sense to me.”

Harris spoke to a wheeler who’s had a colostomy for years, who “told me he was very happy with his,” she says. She also consulted with a local nurse in Billings, Mont. “Those conversations were helpful, but my nurse from Craig Hospital was most instrumental in making my decision.”

Harvey sought out and talked to several wheelers with colostomies and liked what he heard. All three then met with physicians who, in turn, agreed that a colostomy was a rational and practical option.

How it Works
A variety of appliances are available, most being either one or two-piece systems with either a single-use pouch or one that opens and can be emptied and reused. All involve the use of a skin barrier wafer that fits close around the stoma to insure feces travels into the pouch and not onto skin and clothing. Cleanliness is important here to ensure the collection system stays attached and in place. Insufficient care of the site may lead to skin irritation, often from leaking stool, which is then complicated by the use of adhesives necessary for the appliance.

Like many who have chosen a colostomy, Steve Pisano wonders why he waited so long.

Like many who have chosen a colostomy, Steve Pisano wonders why he waited so long.

Once securely in place, the appliance catches whatever comes its way, holding the contents until it can be emptied. In order to empty a reusable appliance, most users position themselves near enough to a toilet or bucket for a convenient and clean transfer of contents. Once emptied, the inside of the appliance opening is often rinsed and cleaned to ensure a good seal when the appliance is closed. Single usage appliances are used once and then discarded. Most appliances are odor proof, though not so much if the seal isn’t good.

“If you can smell it,” says Pisano, “you’ve got a leak. Once I have the wafer and bag in place, it’s OK. Even if something happens and the bag comes loose, it’s in your lap, not underneath you.”

Colostomies among the nondisabled are almost always a necessity due to some problem in the colon, so the location of the stoma is dictated by the location of the problem. People with disabilities often have the “luxury” of choosing where to place the ostomy and stoma. People usually meet with the surgeon or an ostomy nurse to identify a site that is relatively flat and free of potentially problematic and unique contours or bulges while lying down or sitting up.

“Location can be critical in terms of function, self-management, appearance and convenience,” says ostomy nurse practitioner Cherisse Tebben. “People usually choose a site that is most practical and convenient for them in terms of securing a good seal for the skin barrier wafer necessary to prevent seepage and soiling. They also consider how they will change the appliance and wafer, which is especially important for people with limited hand function. Some consider how the appliance fits under clothes. Depending on the contours of their body, the location should accommodate any fold.”

The location of the stoma can affect the consistency of the stool. The colon has three distinct sections: the ascending colon (upward along the right side of the abdomen); the transverse colon (running across the top of the abdomen) and the descending colon (running down the left side of the abdomen), ending at the rectum. Many feel that a stoma located along the transverse colon is less prone to constipation and results in a looser stool. But this location may also create clean-up and odor problems. Loose stool may be quite smelly.

Not a Cure-All
Colostomies won’t solve all bowel management problems. Those dealing with a slow moving GI tract prior to surgery will most likely have the same problem
post-surgery. Those plagued with gas may continue to experience that problem as well. In fact, some have gas intense enough to blow the appliance off the wafer and spill the contents, though most collection pouches come with pressure relief valves with charcoal filters. While the pouch may stay in place, it won’t entirely solve the embarrassing noise or odor problems.

Colostomies can have long-term psychological and relationship implications, as they usually result in significant changes in body appearance and function, which can affect self-image/worth, either positively or negatively. These changes can affect relationships and coping skills as well. Some see a colostomy as the lesser of two evils, or they continue to believe that it is a temporary and reversible situation.

Some find having a feces-filled appliance requiring regular emptying to be absolutely repulsive, a major imposition and cause for ongoing anger and resentment. Wearing that appliance can raise doubt and insecurities relative to one’s attractiveness and desirability as a sexual partner as well.

Personal Reactions
Harris uses a suprapubic catheter and says she didn’t like the idea of yet another ostomy. “I didn’t see it as desirable, especially with it being at the dinner plate level.”

Pisano spoke of imagining “a bag of crap hanging on me and wondering if people will know, and if they do, what would they think. That’s why it took me a year to decide. I didn’t realize the freedom I’d have.”

Harvey’s life got significantly less complicated. “No more invols, no more bowel program,” he says. His aide would change out bags every evening and he was good to go. But eventually he began having problems. Over time scar tissue in his colon built up enough to cause a blockage in the colon. “I just kept getting bigger and bigger,” he says, “and didn’t know why.” Harvey needed surgery to remove the section of colon that was blocked. “What they took out weighed 40 pounds,” he says. “I came out of the hospital 60 pounds lighter.”

He also came out with an ileostomy, meaning his entire colon was removed and the stoma had been relocated to the end of his small intestine. Now the only problem he has is some mucous discharge from his rectum (a not uncommon problem), which is solved with a few minutes of digital stimulation. Despite the extra surgery and the occasional gas build-up in the appliance (which he solves by “burping” it), Harvey says he’d do it again.

Importance of Proper Maintenance
Colostomies aren’t necessarily trouble-free and can create a variety of complications. Most problems stem from skin irritation around the stoma site due to leakage or the appliance or wafer coming loose from the stoma. Skin barrier wafers need to be changed several times a week, with the area thoroughly washed and dried prior to attaching the new barrier. If a particular area is prone to leakage, a special, moldable ring may be needed. Persistent leakage, besides causing irritation, may preclude maintaining a good seal.

Harris struggled for months to find a system her skin would tolerate. “I used a two-piece system for a while, but had skin problems,” she says. “Then I tried a one-piece for four to five months, but that was too unpleasant for everyone, so I went back to the two-piece system along with some duoderm cream, which protects the skin and helps the wafer to stay in place.”

Colostomies may affect the digestive process, so initially people are encouraged to be observant as to the foods they eat and the reactions they have to those foods, especially in terms of gas and stool consistency. Avoiding spicy and fatty foods is usually suggested for a month or two following surgery. People normally do post-surgery follow-up with an ostomy nurse who teaches them how to maintain the ostomy and manage the appliance.

Pisano says learned the routine quickly. “I change the wafer a couple of times a week. It takes about 20 minutes. I can change bags in less than a minute.”

Quality of Life Payoffs
Colostomies don’t interfere with or limit employment. People with colostomies can continue doing the same things as they did prior to the procedure. Nor does a colostomy affect sexual function, sexual activity or pregnancy. People continue to wear the same clothing as before surgery, including swimwear. As long as the pouch is securely attached, people can swim, camp out and participate in all but the most intense body-contact sports. Travel isn’t restricted in any way and bathing, showering and even hot tubbing are all possible.

Several medical studies of wheelers with colostomies indicate significant time reduction in bowel care. A study of SCI veterans with colostomies found they spent, on average, seven fewer hours a week with bowel management. Colostomies also reduced fecal incontinence significantly, as well as autonomic dysreflexia. In addition, colostomies reduced the number of hospitalizations for GI problems. Those with colostomies also reported higher levels of independence, a greater likelihood of travel, and increased self-efficacy.

As with the three people cited here, time savings, fewer accidents, less discomfort and greater freedom all equal what many see as significantly higher quality of life.

As rehab professionals pay more attention to quality of life issues, they seem to be increasingly receptive to the idea of colostomies, especially for those dealing with persistent constipation, diarrhea, incontinence or other bowel management problems. Many with colostomies say they wish that someone would have suggested it sooner, or they had done it sooner. One study indicated wheelers were more apt to raise the idea to medical professionals, rather than having it suggested to them.

“Life’s better now,” Harvey says with a smile. “Flying’s OK, I have more time and don’t have to watch what I eat as much or worry about involuntaries.”

Pisano concurs: “On so many levels, this has been the wise choice for me. I can travel carefree (and free of the commode chair), have more time and don’t stress about an invol.”

“Overall, it’s been a good thing for me,” says Harris. “It took a lot of patience and finding the right equipment that works for me. For the first few months I never ruled out having it reversed and I’m still getting used to it. The payoff is having much less stress in my life, not having to endure long bowel programs, being so discriminating about attendants, and taking so much medication.”

This article was funded by the U.S. Department of Education’s National Institute on Disability and Rehabilitation Research, Grant # H133N0110006. The opinions expressed in this article do not necessarily reflect the opinions of NIDRR.

The Operation

The procedure requires the colon be cut and opened somewhere along its path to the rectum and redirected to a stoma or hole in the abdomen. Users are required to wear an appliance — a bag or pouch — to collect stool making its way through the digestive tract. The appliance may need to be emptied once or several times a day, depending on the volume of food intake.

As with any surgery, a colostomy involves risk of infection, reaction to anesthesia or pain medication. Then there is the overall trauma and stress of hospitalization and concerns about whether hospital staff are aware of the special needs of people with paralysis, not to mention the loss of independence that comes with unfamiliar environs.

The surgery takes about three hours. In addition to a few days in “stir” (long enough to confirm that bowels are functioning), learning how to manage a colostomy can be a steep and difficult learning curve for those lacking a certain level of dexterity necessary to manage the appliance. An opening into the body means infection is always present and requires consistent cleanliness around the stoma.