| THIS MONTH: RETHINKING COLOSTOMIES | | |
I
can’t think of many things in the disability world with a bigger gap
between the perceptions of the haves and the have-nots than a colostomy.
We have articles about the phenomenon dating back to the ‘90s and
little has changed in the intervening decades: People who don’t have a
colostomy don’t want one and can’t stomach (pun intended) the idea of
having one. People who’ve had one can’t believe how much it’s improved
their lifestyle.
From a C7 quad speaking to Barry Corbet in 1998: “Do I have any regrets? Absolutely! I wish I had chosen this option 11 years earlier.” And from C5 quad speaking to one of our writers 24 years later: “My only regret now is that I didn’t get it sooner.”
Of course, a colostomy doesn't turn your poop into pansies. But for many
people — especially those who can’t manage a bowel program
independently, who have had or need a flap surgery, or who deal with
gastrointestinal problems that complicate a bowel program — the benefits
of having a colostomy often outweigh the negatives.
So, in the interest of being clear-eyed, we'll look at the objections to
the idea of a colostomy, the benefits that a colostomy can provide, and
the complications you'll need to manage if you choose to get one. | |
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A BAG OF POOP
Most people’s major objection to the idea of a colostomy is that you
wind up with a bag of poop attached to you. Some people just find the
idea, the smells associated with it and the sound of gas burping from a
colostomy bag to be … gross. But modern pouches do a much better job at
keeping the smells at bay and people without colostomies also deal with
gas. For people who have consistent bowel issues, managing a contained
bag of stool may be a lot less objectionable than having to clean up
after regular accidents.
As Rachael Palmer, a C6 quad, explained in “Why Some Wheelchair Users Wish They’d Had a Colostomy Sooner,”
“There was one year where I had diarrhea every single day. I had an
accident at least two or three days every week. I was terrified to eat.
If I had a family function to go to, I’d plan ahead by not eating. I was
so scared of having an accident.”
For Palmer and many others, not having to constantly worry about
accidents was enough to get over having to wear a colostomy pouch. But
what about strangers or romantic partners? In “Relationships with Baggage: Dating with a Colostomy,”
Veronica Skye put it this way: “How do you explain to the person you’re
dating that you shit in a bag? There’s no easy way to do it.” | |
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Illustration by Mark Weber | |
Turns
out the hard way — full disclosure early on — is the most effective. If
a partner can’t handle the realities of a colostomy, you should know
that sooner rather than later. Many ostomates (yes, that’s a real term
for people who’ve had a colostomy) find that a colostomy is a
net-positive for relationships, especially considering the alternative.
In “The Joy of Colostomy,”
C5-6 quad Danny Hinzman put it this way: “It’s still a lot easier than
having to explain to a girlfriend how to do a bowel program.”
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THE BENEFITS
Let’s start with time. Many people with SCI or other forms of paralysis
consider a colostomy because they’re spending absurd amounts of time
managing their bowel program. In “Goodbye Bowel Program, Hello Colostomy,” NM Editor-in-Chief, Ian Ruder, offered this eye-popping, back-of-the-napkin math:
“By my count, I’ve probably endured around 4,500 bowel programs. If you
figure an average of 2.5 hours for each one, I’ve spent somewhere in the
ballpark of 11,000 hours waiting on my shower chair. That’s over 450
full days of my life.”
Everyone’s math is different, but if you’re spending hours at a time on
the toilet, plus cleanup every time you have an accident, it’s worth
thinking about what you could do with that time instead.
Other benefits include fewer accidents — yes, you can still have
blowouts with a colostomy pouch, but with proper management, they’re far
rarer. “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,” says Steve Pisano.
In “Colostomy: Pros and Cons,”
Rick Harvey had medical issues that forced his hand on a colostomy, but
he came around to its benefits once he started living with it. “Life’s
better now,” he says. “Flying’s OK, I have more time and don’t have to
watch what I eat as much or worry about involuntaries.”
For Palmer, the procedure had a profound impact on her relationships:
“It was the first time I was in a relationship where I allowed myself to
actually fall in love with someone. I couldn’t do that before,” she
says. “My sex life improved because I didn’t fear the humiliation of
having an accident.”
Another major benefit: increased independence. Many lower quads find it
possible to manage pouch changes on their own, and those who rely on
personal care attendants find that they reduce the hours and complexity
of their care needs. Mark Fuglevand, a C6 quad, designed a set of 3D-printed devices
to make it easier for him to change and manage his colostomy. In this
video, he explains why he decided to have a colostomy and what it takes
for him to manage it independently. | |
STOMA ISSUES, SKIN BREAKDOWN AND OTHER COMPLICATIONS
So, colostomies can save people a lot of time and hassle, but that
doesn’t mean they don’t come with their own challenges. Bob Vogel’s
article “Colostomy Maintenance”
does a deep dive into some of the post-procedure challenges, including
hernias, prolapses, skin breakdown around the stoma, and motility
issues.
The basics of care are the same as many other secondary complications of
disability. Learn your body, your systems and what works for other
people, and everything is manageable. Drinking plenty of fluids and
eating fiber can help with motility issues. Belts can help prevent
hernias. Prolapses aren’t always a problem, and if they become one, they
can usually be fixed with an outpatient surgery. Skin breakdown can be
mitigated with the right soap, a blow dryer and finding the ostomy
products that work best for your body.
Oh, and there’s something called ghost poop. You should read Vogel’s
article for the full picture, but his number one piece of advice
revolves around finding the right team to help you manage the colostomy
transition:
“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.”
Making the decision to get a colostomy is never an easy one and whether
the benefits outweigh the drawbacks will depend on your personal
situation. As Steve Harris, a T9-10 incomplete para, puts it:
“A colostomy isn’t for everybody. It’s a big surgery and commitment. But
if you’re having problems with the bowel routine, and you can’t seem to
get it under control, it’s a perfectly legitimate option.”
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