Colostomy Confidential

My first emotional breakdown over cancer was contained to a few dignified tears and maybe a sniffle. It happened in the middle of a crowded cafeteria after the call came that, yes, the 4-centimeter tumor in my upper rectum was cancerous, and I’d have to come back in for more scopes and scans to determine whether it was contained. It seemed uncool to drop to the floor and wail unabashedly in the grilled chicken sandwich line while a couple hundred strangers watched.

I saved that reaction for a couple weeks later in my colorectal surgeon’s office, when Dr. Ben Hopkins told me the tumor’s location was problematic. Cutting into the rectal muscle to remove it meant destroying the sturdy, complete seal necessary for continence. Without a colostomy, he said, I’d typically have 30 seconds to a minute between feeling the urge to go and actually going.

After quickly estimating the time it takes to get from my office desk to the toilet, my bed to the toilet, my movie theater seat to the toilet, etc., I understood that refusing ostomy surgery probably wasn’t an option unless I could get comfortable with the idea of frequent, public defecation. So that’s when I really lost it, clutching my friend’s hand and just bawling my fool head off.

I actually felt more comfortable with the idea of dying from cancer than living with the ostomy.

“Does anyone ever just say, ‘Thanks for the information,’ and you never see that person again?” I finally asked Dr. Hopkins.

“Not anyone as young and healthy as you are,” he replied.

He said he had patients who were athletes, business people, lawyers and of every other stripe, all living just fine with ostomies.

Still, I wondered if I’d ever get into a swimming pool again. Travel fearlessly again. Have sex with my husband again.

Spoiler alert: Yes. Yes. And yyyyyaaaaaaasssssss, honey.

Let me preface the rest of this story by telling you that any time you’re dealing with derriere-related illness, it’s going to be absurd. It’s best to learn how to laugh at yourself right up front. In the last year, I have had, by my count, at least 30 strangers see my bare behind. There may be more. I now would be comfortable doing my next medical examination in the waiting room.

My tumor was removed on Dec. 11, 2017. My gluteal fold was sealed in a surgery known as abdominal perineal resection. I have a 1-1/4-inch diameter piece of my bowel that comes through the skin just to the left of my belly button. On Jan. 22, 2018, another surgeon removed about 20 percent of my liver due to colorectal cancer that metastasized there. I went back to work on March 1, 2018.

I shed plenty more tears looking at my new stoma and all the little abdominal scars over the stretch marks already there. But I am grateful every day for my sturdy, long-suffering, beautiful body that does everything I need it to do. Luckily, I don’t want it to do anything too taxing or stay awake too long, because treatment for stage IV colorectal cancer exacts a price, but my body truly does everything I need it to do.

Loving my body represents a relatively new development in my life. I used to hate my body and basically did everything I could to destroy it — not consciously, but I was destroying it nonetheless. A lot of cancer patients’ stories contain some version of the line, “I was a healthy person and never thought I’d be a candidate for cancer.” Not mine.

I was the ideal candidate for colorectal cancer: morbidly obese for most of my life, smoking daily for 10 years, eating (and drinking) a diet that seemed designed to kill my gut bacteria. I’m also a white woman in my 40s, and research published last year shows our rates of death from colorectal cancer are up significantly without saying why. In fact, the American Cancer Society just revised its screening guidelines for this cancer, suggesting screenings begin at 45 instead of 50.

I stopped smoking in 2004 and began fixing my diet and losing weight in 2009, but colorectal cancer plays the long game. Blood showed up in my stool at the end of 2016. I was attempting to dismiss it as internal hemorrhoids or some other benign problem until a friend from high school shared that she was fighting colorectal cancer. She suggested I get checked out just to be on the safe side. My annual well-woman exam was coming up, so I decided to mention it to my doctor during that.

The doctor, to her credit, immediately referred me for a colonoscopy. With no family history, I was absolutely sure my results would be clear and made lots of jokes to my friends about the hell of fasting and drinking prep solution. But as soon as I was lucid after the procedure, the gastroenterologist told me he’d found a mass in my rectum. I still refused to believe it was anything until that day in the cafeteria.

The treatment regimen was intravenous chemo, radiation, two surgeries and then oral chemo. Naturally, it all sucked, but I was able to work the entire time except through the surgeries. Any time you can drive yourself to a cancer-related appointment, park the car and walk in, thank the deity of your choice. A lot of other patients aren’t able to do that.

My system was to book the latest available chemo or radiation appointment of the day, pack up my laptop, roll on over to Vanderbilt-Ingram Cancer Center and work until they called my name. I had a really great wig for weekdays, some gorgeous scarves for the weekends and various pills and creams to combat the side effects: rawness from radiation-induced diarrhea, plus nausea and lethargy.

In the early days, dealing with my stoma was fraught with peril. Being at home with it for a couple months was useful, because it allowed me to make mistakes alone or at least with no other witnesses than my husband and the dog — and the grosser I am, the more the dog likes me. My husband, Jeffrey, is less keen on grossness but certainly experienced a lot of it helping me clean and bandage a slow-healing gluteal wound. I’m incredibly grateful for his love and patience.

The key to being a successful ostomate — that’s what we call ourselves — is experimenting with different ostomy-care supplies, in conjunction with advice from Vanderbilt’s fabulous wound and ostomy nurses. There will be some misses, but that’s OK. In the end, it’s not brain surgery. Find supplies that will stick to your belly, not irritating the skin, and regularly change and clean everything. It’s time consuming and not as easy as just sitting on the potty, but it’s doable.

The right shapewear will prevent stoma-related hernias and ensure you can wear all your form-fitting clothes without anyone being the wiser. You’ll also receive a lot of information about a diet that can reduce gas and regulate your output — getting your body on a schedule that’s easiest to deal with. I promise you: Nobody has to know you have an ostomy unless you tell them. The only reason I’m outing myself is because a gastroenterologist friend told me she has patients living with intense pain who refuse to even discuss the possibility. Now that I have mine, that seems like lunacy to me: tying your life to pain management and a bathroom because you fear what someone might think of the way you poop. Admittedly, it took me awhile to get here.

Also find your people. My favorite ostomate is a friend’s dad, a guy named Dave. I’ve never seen him, but we talk on the phone because he told my friend that he would be “absolutely thrilled and elated to talk to Heidi about her ostomy.” Those were the exact words he used. If my friend had said, “He’d be glad to speak with you” or “he wouldn’t mind sharing tips with you,” I’d have never called. So now that I’ve got advice to share, I tell people newly diagnosed with colorectal cancer I’d be thrilled to talk to them about my ostomy.

I also have an online community and especially love the young, brave, gorgeous men and women who post videos about caring for their stomas. A major clothing manufacturer recently featured a lingerie model who is an ostomate. A lot of those young people are recovering from Crohn’s disease or ulcerative colitis and see their ostomies, not as horrible burdens, but as gifts freeing them to live their best lives. Sometimes, when I’ve felt down about being different, I’ve called up YouTube videos of those young people sharing their stories.

Let me answer the remaining questions you likely have:

• Do you feel it when you’re going to the bathroom? Yes.
• How often does it happen? The same as before the ostomy.
• What about gas? Ugh. Yes. But I can clap my hand over the stoma to muffle sounds and, unlike non-ostomates, I have a charcoal filter in the bag. You’re welcome.

Dr. Hopkins asked me on a follow-up visit whether I’d named my stoma. The ostomy nurses asked me the same question. A lot of people do, they said. Mine ended up naming itself — the words clearly popping into my head one day as I changed out the apparatus: The Baby.

The Baby can be irritating and unpredictable. The Baby needs regular changing to stay clean and healthy. But The Baby is beloved because she saved my life.