Busting Myths: Adjusting to Life as an Ostomate
To say that I wasn’t really prepared for life with an ostomy is an understatement. But life happens, and for me, my intestinal blockages had gotten worse. I was no longer responding to the treatments the docs had used in the past. Plus, the pain from this last episode in the summer of 2019 was excruciating. Based on what the doctors were telling me, an ileostomy seemed like the only way out. Funny, how going to the hospital for an ileostomy—a surgery that he’d been avoiding for almost 10 years and a back of my mind fear—had at last become the only way out. That still doesn’t lessen the shock of waking up with this appendage attached to your body. At first look, your ostomy seems like it’s outside of nature and something that’s just not supposed to be there.
Believe it or not, there’s a lot of information written about ostomies, not just from doctors and nurses who perform this procedure and help patients adjust afterwards. But there are also a lot of articles and social media postings written by people just like me. People who wear an ostomy pouch. Ostomates.
Finding New Footing
In just a few short hours, you become somebody different, or sort of different, in that you have a new name, become part of a new community of people. At least, that’s the way you feel at first. Ostomates. It took me a while to get connected to that name…especially at first in the hospital and during my early days at home. That’s when I was really squeamish about looking at my ostomy. My ostomy. Such funny words.
Strangely, I really didn't know anything about an wearing an ostomy. Looking back, I have to say, that was my bad. I hadn’t done much, if any, research. You might say I had been putting my head in the sand. I probably should have recognized that this was eventually going to be the outcome. In my case, it was when ambiguous potential finally transitioned into harsh reality that question after question raced through my mind: What would my return to work be like? How could I make even a short trip to the supermarket? Would I ever be able to go out with friends?
I glanced at some medical literature online and read the myths…things like how it would change the look of my body or it wouldn’t; how I couldn’t wear regular clothes, or I could; or how I couldn’t do all the things I was used to doing like sports or going on vacation, even taking day trips, or I could. The medical literature said these myths weren’t true. But, honestly, early on, you couldn’t have proven any of that by me.
Understanding ahead of time what it means to wear an ostomy and the modifications you have to make in your daily routine would have certainly helped with my adjustment. I give a lot of credit to people who prepare for the surgery, do the research and begin to understand what lies ahead. I have to say that early on, I was experiencing some self-recrimination. In truth, whether I wanted to believe it or not, I had sensed during those 10-years of episodes, that there was a remote chance that I’d have to wear an ostomy.
Still, until you live it, you can never fully suppress the fears, bust the myths or—and this is probably the most important part of all—develop your own way of doing things in a life that turns out to be a little bit different than what it was before. Even acknowledging that knowledge is power, I believe you have to live ostomy life to fully accept your new normal, even get to feeling gratitude. That’s the point at which you understand that this crazy little bag that has become an appendage of your body is giving you your life back, enabling you to survive and thrive and retake control.
Ignorance is Bliss
But, at first, it was just easier for me to ignore it. I thought that would make dealing with my ostomy easier. Giving it a quick look was bad enough. Emptying the bag was even worse. It was really hard. It's odd because it's your insides, but now they’re hanging on your outside. It's not a normal thing to see.
When I got home, even though it was part of my body, I still didn't want to touch it. My wife, Michelle, was really strong, though, and luckily, she thought it was cool or something like that. So she helped me get comfortable with it. I hope she knows how much I appreciate all that she did. For a while, she was helping me empty and change the bag to make sure I went through the steps correctly.
As for me, I used gloves at first to touch it. The gloves made for a helpful barrier. Honestly, I really didn’t want to touch my ostomy at all. Finally, a few months after the surgery I went to see a stoma nurse and saw the way she handled it. That's when I started feeling more comfortable with it. Slowly, I actually got better, first, at looking at it and then, touching it. I even figured out I wouldn't really hurt it by moving it around.
Still, even now, more than a year with my ostomy, I get this odd feeling when I look in the mirror. I can't quite describe the feeling. It’s not really that I’m sad. But it makes me aware that this is a new life I’m living now, and I can't quite do things the same way as I could before. It's not bad or good. It's just different with lots of things—things as everyday as the shirts I wear. I can't just throw a tight-fitting shirt on, because there’s this thing with my body there. especially because my stoma is prolapsed. That means it sticks out a bit more than others I have seen. It means I always have a weird bump or bulge where the stoma is.
A More Intentional Clothing Style
Even so, I was able to get into jeans and an untucked button-down shirt really quickly after my surgery. I got a Stealth Belt Vertical wrap as well as an Ostomy Secrets wrap. The Stealth Belt and the Ostomy Secrets hold the pouch close to the body, so it’s protected and isn’t easy to see. Funny names, aren’t they? They seem to reinforce the fact that many ostomates don’t want to talk about this stuff or shouldn’t. One thing I’ve learned, though, is that there are no rules about talking about your ostomy or not, telling people about it or not. People seem to be all over the place with that. In fact, some ostomates expose their ostomies when wearing bathing suits or in photos. They write about it on Instagram. Some even moonlight as comedians and in front of club crowds poke fun at themselves and their ostomy which they’ve named. Can you imagine, calling your ostomy bag Buddy?!
Others keep things on the down low. I was more like that, at least until I rechanneled my energy and started to develop Ostoh. Early on, it seemed pretty daring for me to be out talking to a stranger, a tailor whose wife actually had an ostomy for a while. We were talking clothing and what might be the best style for me now. My style tends to be jeans and untucked shirts. But, for example, I still have not worn a suit. Fortunately, I don't need to be in a suit for work every day, but there are those times like weddings or fancier events when I’ll have to wear one.
The tailor recommended suspenders as a way to hold up pants and give the pouch some room to breathe. That will be a different look for me now. But realistically, tight waistbands or belts will likely feel restrictive, so the suspenders were a good suggestion.
For the most part, though, it's not a big deal for me to cover my ostomy. I do find, however, that I look for longer t-shirts. In case I don't want to wear an ostomy wrap on any given day, I can be confident it’s covering the bottom of the bag. You’ve got to experiment with what is most comfortable for you, but any modifications you make are likely not far out of line with any of your pre-ostomy style.
Some Change in Athletic Activity
One thing that was a little different was taking up some of my outside athletic activities. Prior to my surgery, I had gotten into Filipino martial arts. There’s a lot of physical contact in that sport, and it's not something I’ll be able to do again. My doctor told me that contact sports come with potential for injury, so it’s recommended to avoid that kind of activity.
I know now that a lot of ostomates who’ve always been focused on maintaining a healthy body wonder if they can lift weights. It’s a good idea to check with your doctor before weightlifting or resuming any activity really. I’ve been told you certainly need to wait for your surgical incision to heal before lifting weights or, for that matter, any athletic activity, to reduce your risk of complications. Once you’re fully healed, it’s okay, but it’s probably wise to use a device like a vertical belt to support your abdomen when lifting weights.
For me, swimming became a great sports pastime. I was actually swimming within five weeks of being home from the hospital. I think it helped with some of the core muscle groups. It also let me float face down. I don't really get to lay on my stomach anymore. So floating that way every now and then is really nice.
Everyday Family Life
I'm still iffy with trips longer than an hour. I don't want to have to stop at random rest stops. but I have found that stopping at a Barnes and Noble or a hotel gives access to a nice clean bathroom. If I must travel, I tend to make sure I'm traveling when I know I'll have a lull in the output. That’s usually between 10 am and 2 pm for me. I'll also eat a little less so that my intestines don't start to become active. With planning it's not terrible, but it’s nerve-wracking when the bag starts filling up and you can't find a rest stop. That said, planning helps to cut down on the output and this helps to avoid accidents or mishaps which, in truth, may happen a few times at first. Also, it’s important to have your ostomy supplies with you at all times whether at work, out socially, or on the road to make sure you’re at the ready to adapt to any situation that arises.
Because Michelle and I don’t have kids, I don’t have to focus on things you have to be careful about when you wear an ostomy and have kids around. I have seen posts on social media about people worried that having an ostomy and having a family—even being pregnant—will be difficult. But then they find out it’s totally doable.
They talk about how it's hard at first to keep the kids from randomly jumping on you, but after a while the children understand and kind of naturally respect certain boundaries. We visited a couple who are friends of Michelle’s and they have twins. We didn’t say anything to the kids. Even though I had to deflect a few stray limbs, we were still able to play and learn and have fun.That was a first-hand a glimpse of how if you’re a parent with an ostomy, children’s movements when they’re near you is something you have to think about. . And that’s really what it is. Awareness, not limitation.
As with any surgery, it takes time to heal and recover. I can vouch for one thing, though. Whatever your situation, getting back to doing the things you did before wearing your ostomy restores your confidence. I know my focus on Ostoh took me away from my preoccupation with life being a bit off kilter and got me back to the person I always was.
Much like as in family life, it’s kids who often teach us the simplest, yet most complex, life lessons. If you treat wearing an ostomy as being normal, no one will know anything’s different. Having an ostomy and being an ostomate is just life. Your life, and mine, but life with a whole new lease on it and an improved quality of living.
Life has an unusual way of pushing you to where you need to go. To me, that’s what Ostoh is all about. If you’re interested in learning more about Ostoh and how it can increase your comfort, email us at hello@ostoh.com or use our contact form. Our goal is to make your ostomy life easier and make you feel what it means to be yourself.