A year ago, I underwent a colostomy, a procedure I swore I’d avoid. In my 37 years as a T10 complete para, I’d had a reliable bowel program, but I developed a rectal prolapse that was getting worse and required intervention. After an attempted fix with a surgical mesh sling failed, I agreed with my surgeon that an open loop colostomy would give the prolapse repair time to heal. I took solace knowing the colostomy could be reversed in the future.

Yet, like many with SCIs who get a colostomy, I soon found it to be extremely convenient. I could still enjoy my favorite sports, including scuba diving, and it didn’t bother my girlfriend — now my wife — or affect our sex life. Realizing this, I decided against reversal. The colostomy does present its own set of challenges, but with help from my surgeon, ostomy nurse and peers, it’s been manageable. Here are tips I’ve learned about maintaining an ostomy.

The Most Important Thing

No matter how much you know about living with a colostomy, unexpected questions and issues are bound to come up. Having good communication with your colorectal surgeon and ostomy nurse is essential. While some problems may require the surgeon’s input, many of the day-to-day issues and maintenance questions can be resolved more quickly, and often with more insight, by an ostomy nurse. Ask your surgeon or primary care physician for a referral to establish a relationship with an ostomy nurse who can provide help without delay in the event of an ostomy problem.

Hernias

After surgery, my ostomy nurse fit me with an Ibnotuiy ostomy support belt (see resources) and suggested that I wear it for at least eight weeks after surgery and consider wearing it indefinitely. Support belts are one of the best ways to avoid developing a post-ostomy peristomal hernia — a bulge around the stoma from a weakness or split in the muscle wall of the stomach. “In general, we tell ostomy patients to wait six to eight weeks before doing any heavy lifting to help avoid hernia, which isn’t really an option for people with SCI who need to transfer. So wearing a hernia support belt is the best prophylactic measure to help prevent hernia,” says Dr. James Taylor, my colorectal surgeon.

Studies suggest approximately 40% of nondisabled people who get a colostomy develop a peristomal hernia, while a 2019 study on colostomy with SCI, published in Topics in Spinal Cord Injury Rehabilitation, found rates of peristomal hernia in people with SCI to be 8.3%. For me, the belt helped alleviate post-surgical pain around the stoma and continues to provide a supportive feel.

While surgery is an option to revise problematic or painful ostomy hernias, most doctors recommend seeing if you can live with it or trying a support belt to reduce issues. In the 22 years since John Arnow had a colostomy, he has developed a peristomal hernia that bulges out “about the size of a small egg.” An L1 incomplete para, Arnow, 67, has never worn an ostomy belt, nor has anyone ever suggested wearing one. “[The hernia] never bothers me, and is nothing that I would consider a surgical repair over,” he says, adding that his hernia has remained stable despite his being very active in adaptive cross-country skiing and ocean kayaking.

Prolapses

About three months after my ostomy, part of my colon started to prolapse through the stoma. According to studies, ostomy prolapse rates range from 7% to 27%, with colostomies more likely to prolapse than ileostomies. Two leading causes are a stoma hole that is too big, and the presence of extra colon, referred to as “redundant colon.” I fall into the latter category, and wearing the ostomy belt didn’t have an effect one way or the other.

My doctor explained that if the prolapse isn’t causing problems and is easy to reduce, it’s better just to live with it and keep an eye on it. I did this and worked with my ostomy nurse on options to reduce the prolapse by shrinking it and pushing it back into the stoma.

Proposed remedies included putting a cold compress on the stoma, or pouring a few tablespoons of granulated sugar on the prolapse, which should cause it to shrink. I never tried the sugar method, but found that cold water from a shower nozzle caused it to shrink and I was able to push it back into the stoma. My ostomy nurse also gave me a belt with a prolapse cover that put pressure over the stoma to contain it.
Despite my efforts, my prolapse continued to grow — eventually protruding as much as 4 inches — and became more difficult to reduce, making it more difficult to change wafers. My team agreed a stoma revision surgery was reasonable.

There are multiple surgical revision options if a prolapse is causing significant problems. One surgery revises the stoma and puts in mesh to prevent the colon from prolapsing. Another alternative is a local repair where the surgeon pulls out as much prolapse as possible, stitches up the base, and cuts out the prolapse. It can be repeated if the prolapse returns.

Seven months after my colostomy, I chose the latter. The revision took about 30 minutes. I spent one night in the hospital and had minimal discomfort. The prolapse did return three months later, but so far, seven months later, it remains small and easily manageable. If it gets difficult to manage again, I will opt for another simple revision surgery in hopes there will be less redundant colon left to prolapse.

Skin Maintenance

Surgical repairs and revisions can make unwanted bulges quickly disappear, but there are no such simple surgical fixes for compromised skin. This makes regular maintenance and vigilance imperative.

Ensuring the ostomy wafer seals well to your skin is one of the best ways to avoid blowouts and leakage, and to protect your skin. In his 10 years with a colostomy, Eric Stampfli has learned what a difference the right soap makes. “Only wash with Ivory soap. It enables the wafer to stick much better because it doesn’t have any moisturizers or additive that will leave a film on your skin,” says Stampfli, 65, who is in his 48th year as a T11 para. “I also put the wafer under my arm for a minute or two to warm it up, and make sure the skin is completely dry before applying it.”

By following Stampfli’s advice, I haven’t had a leak or blowout … yet. I generally change my wafer every two to three days, and that includes days when I’m swimming or bathing. Other good suggestions include using a blow-dryer — with no heat if you don’t have sensation — to dry the skin around the stoma, and with heat to warm up the wafer.

Even with careful application, an ill-fitting wafer can exacerbate skin problems. Mark Fuglevand, a C6 incomplete quad who got a colostomy five years ago, has had problems with skin breakdown because of stool getting under the wafer. He has a flat stoma and a spastic stomach which would pull away from the wafer. “For me avoiding skin breakdown is finding a proper-fitting wafer,” says Fuglevand, a 46-year-old United Spinal Association member. “I found a flat, very flexible wafer called the New Image by Hollister, which stays on three or four days without leaking.” But even with the right wafer, runny stools can still get underneath to cause weepy skin. Changing the wafer more often is the best solution.

Arnow has an indent next to his ostomy that makes achieving a good seal with the wafer tricky. To keep his skin healthy, he fills the indent with a round protective seal made by Eakin. As an extreme ocean kayaker, Arnow found that his spray skirt, which seals around his waist and keeps water out of the kayak, also constricts his ostomy, and, if anything is coming out, can cause a blowout. He says, “I reinforce and build up the wafer with a ‘Y’ barrier” — an elastic adhesive strip that lifts and provides extra wafer support around the stoma.

Another ostomy challenge can be skin irritation or breakdown around the stoma. “I use a nonalcohol adhesive wafer remover so it doesn’t pull on skin,” advises longtime New Mobility editor Tim Gilmer, 79. Gilmer got his colostomy six years ago, in preparation for a flap surgery after over five decades as a T11 paraplegic. His bit of advice has served me well, especially when I’ve needed to change a wafer on the fly, because the adhesive remover leaves skin clean and ready for a new wafer to stick on the skin.

Skin-protectant barrier wipes and sprays are another option, though none of the people I’ve interviewed use them. For Stampfli and me it is because, with sensation, some barrier wipes containing alcohol are painful to compromised skin.

When skin does break down, Gilmer uses a fungicide powder to absorb moisture and help heal skin. A method I employ to heal weeping or open skin is to wash it, pat dry and apply a 40% zinc oxide paste like Desitin or Boudreaux’s Butt Paste. I leave it on for five to 10 minutes, then wipe it off and reapply a wafer. Other times, I’ll put a thin film of zinc oxide paste on the red area around the stoma and apply the wafer. The caveat is that the wafer won’t stick where the zinc oxide paste is, but usually this clears up the skin by morning when I check and change the wafer again.

Poop Problems

With a colostomy it is vital to take steps to stay regular and manage the consistency of your stool. To avoid constipation, most colorectal surgeons recommend drinking at least 64 ounces of water or other noncaffeinated beverages a day, and taking a fiber supplement for bulk, like the psyllium husk found in Metamucil. For Gilmer, the first step is taking time to fully and completely chew food. “I’m always the last one at the table because I’m very careful to do this,” he says. Gilmer adds that eating too many carbs will back him up, so he focuses on getting a mix of fruits, vegetables, protein and fewer carbs in small-to-medium portions, along with water at each meal. For good motility, Arnow strives to keep things loose enough to avoid large, hard stools that can get obstructed. “When I haven’t had enough fruit, this can happen,” he says. “I make a conscious effort of eating blueberries and flax seed and drinking plenty of water.”

When things do slow down, Gilmer takes a capful of Miralax to get things going. Many ostomates rely on regular doses of milk of magnesia. When my digestion slows to a crawl, I will take two Colace stool softener capsules in the morning and at night and a capful of Miralax powder prior to bed. This helps within a day or two, albeit sometimes uncomfortably, as hard stools pass through the stoma. Talk with your surgeon for guidance on which laxative might work for you.

“Ghost poop” may sound like something from a bad horror film, but rectal mucus is a real challenge for some ostomates. It happens because even though stool no longer goes through the last part of the colon, the walls of the colon continue to produce mucus. A brief digital stimulation usually helps get rid of excess mucus. Stampfli adds the precaution of putting a thin feminine hygiene pad in his underwear. “This accomplishes two things — it absorbs any excess mucus, and it provides a bit more padding to protect your butt from pressure ulcers,” he says.

If rectal mucus becomes excessive, painful or is accompanied by bloody discharge, it can be a condition called diversion colitis and is something to ask your physician about. “When/if diversion colitis does happen, a doctor can prescribe an enema with short-chain fatty acids that will provide nutrients to the colon wall, which usually helps,” says Dr. Taylor.

Resources

• “Colosto-Mania”
• Coloplast
• Hollister
• Ibnotuiy Ostomy Support Belt
• “Making Sensible Ostomy Solutions”
• “What Is Diversion Colitis?”
• “Why Some Wheelchair Users Wish They’d Chosen a Colostomy Sooner,” with “Irrigating a Colostomy” sidebar

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