One sunny afternoon in 2012, I was visiting some old friends and mentioned, as you can with old friends, that I’d been experiencing some post-menopausal spotting. I was going to see a doctor in a few days to check it out – my first medical visit in years. I hadn’t been avoiding it deliberately. I felt great, was never sick, and just never got around to it. One of my friends shook his head ruefully. “Well, you’ve had a good run. But I hope you know that’s all over now. Once you see a doctor, it’ll be a downward spiral of one medical problem after another, like flushing a toilet.” I laughed.

A few months later, I was on a gurney being prepped for major surgery – a full hysterectomy (they’d found an endometrial tumour) and a bowel resection (a rectal tumour had shown up, unexpectedly, in a scan). Both malignant but small and non-aggressive, thankfully. The resection would leave me with a temporary loop ileostomy. I remembered my friend’s warning and made a mental note to curse him out.

But the downward spiral wasn’t over yet. Before long I developed a parastomal hernia and rectovaginal fistula, an opening between the vagina and rectum. Oh, and somewhere along the way I was diagnosed with sleep apnea, diabetes, and high blood pressure.

Fast forward another year. Another surgery. I was given an option to just repair the fistula and eventually, hopefully, reverse the ileostomy. But given the fistula’s location, there was a high risk of failure once normal bowel movement returned. That’d mean another repair surgery, and this could be repeated numerous times. Not for me. The possibility of multiple emergency room visits and more surgeries made a permanent stoma a much more attractive option. So I went under the knife again, this time to take down the ileostomy, repair the hernia and fistula, create a permanent end colostomy, and remove the rectum.

So you know the scene in Men in Black II, where Will Smith and Tommy Lee Jones are flushed through water-filled pipes to escape MIB headquarters? They finally emerge into the daylight, sputtering and exhausted but ready to start a new adventure. That’s what it felt like to me. Okay, maybe not immediately. But by the time I could plunk my Barbie butt in front of the computer without wincing, I knew it was time to get on with my life. My ‘new normal’ life, as they say.

Up to this point I’d been totally reactive. I wore what the stoma nurse recommended, changed appliance types when she suggested it, and turned to her for advice whenever I encountered a problem. That’s all good, of course, but it’s a ‘damage control’ mentality. Now that this second stoma was going to be around as long as I was, I decided to become more proactive, by learning how it all worked and how to actually live with an ostomy.

The wealth of information available online was staggering. And also confusing. Even the vocabulary was confusing. It took me ages to understand that one person’s barrier is another person’s wafer and another person’s flange. And when yet another person says ‘flange,’ they mean the ring you stick your bag onto!  Eventually I got the hang of the lingo and dived into the wonderful world of online ostomy support groups.

I can’t imagine how ostomates got along in the pre-digital days. When you have a sudden problem at three a.m. there’s nothing like knowing that within minutes, you can reach out and talk to someone, somewhere in the world, who’s been there, done that. Of course, ostomy doctors and nurses are the go-to resource for medical concerns, but support groups (in person or online) offer the best practical advice on day-to-day living. This is where you find answers to important questions like “When and how do I tell someone I’m dating about my ostomy?”, “What’s going to happen when I go through airport security?”, and “How do you get poop stains out of a carpet?” In fact, one problem with online groups is the abundance of information – usually good, occasionally bad, but always well-intentioned. It’s hard to keep track of it all in your head and trying to find something you once read somewhere a few months ago is a lost cause. Even if you did find it, how do you know if it’s information worth keeping? I learned to discriminate. If a tip sounded a little iffy or too good to be true, I checked it out with reliable sources. And then made notes of the best ones, knowing that even if I didn’t need that information immediately, it might come in handy someday.

Fortunately, with a background in writing/research, this was a natural fit for me, and before long I’d amassed quite a large collection of things that made my life with an ostomy a little easier. Along the way, I even developed a few of my own – things that made my life with an ostomy a little easier. And I made notes of those too. It felt good to know that when someone posted a problem in an online support group, I could now offer some helpful advice. And I started work on developing a web site and writing a book of tips, so even more people could benefit from the great information that’s out there. I love the idea of ostomates helping ostomates, and this felt like a good way to ‘pay it forward.’

Another positive outcome of this journey has been the opportunity to spread awareness of ostomies. Many ostomates feel very private about such personal details, and I understand and respect that. But I’m an ‘open book’ type, so I never miss an opportunity to tell people I have a colostomy. If it fits naturally into a conversation, I mean. I don’t blurt it out to strangers in elevators. 😊

Anyway, I’ve been surprised how many respond with stories of their own family members of friends with ostomies. They often seem relieved to have someone to talk to about it. I can’t tell you how funny it is to hear folks who are facing a colonoscopy say “You’re so lucky to have a colostomy!” after learning how much easier I’ve found it with a stoma. And my daughter says it every time she’s stuck in the bathroom with constipation or diarrhea. While they’re mostly joking, of course, it’s as validating as it is silly. It means that the next time these people encounter someone with an ostomy, or if they need one themselves somewhere down the road, they won’t be overcome with pity and despair. They’ll know that having an ostomy isn’t the end of the world. Hopefully they’ll help spread that message. It’s a good one.

This article first appeared in the Winter 2018 issue of Ostomy Canada Magazine, a semi-annual publication of Ostomy Canada Society.