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Colostomy Confidential

January 3, 2019 | Heidi Hall

Photo by John Russell

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.

Heidi Hall with her husband, Jeffrey Joseph, and their dog, Griffin. Photo by John Russell.

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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

9 Comments »

  1. Heidi, you continue to be am inspiration. I had Jeffrey’s job with my mom’s ostomy and she also handled it like a champ. Thanks to her, another friend (who named hers Stella), and now you, I am so grateful for that ostomy option because it gives life in so many ways. Best to you, Jeffrey, Griffin and The Baby.

    Comment by Jenifer Grady — January 4, 2019 @ 8:43 am

  2. This is an incredible piece of writing by Heidi Hall, who I am in awe of. Thanks for writing this, Heidi. I am going to share it with a friend who is struggling with her own such situation and can benefit from your openness and clarity (as we all can on this lesson in life.)

    Comment by Anne Paine — January 4, 2019 @ 10:20 am

  3. Heidi,
    Thank you for sharing this eloquently written piece. Your courage, humanity and humor all rolled up into a beautiful story of a surviver. .

    Comment by Viney Mosley — January 4, 2019 @ 12:08 pm

  4. Heidi,

    I think I may have told you before, but you are an inspiration to many. As a gifted writer, that uses self-deprecating humor, you tell your story. It’s amazing! I hope your story will Inspire others and help with your emotional healing that has to take time to recover from (I’m just making an assumption here!). Anyway, keep sharing! It’s phenomenal!!

    Comment by Gina Weisenborn — January 4, 2019 @ 7:27 pm

  5. Heidi, I admire you so much for writing this article. So many people don’t understand or even know what they are. My husband had one for a few years so our family is real familiar with them. Without it he couldn’t have lived.
    Thanks again for being so informative and the manner in which you approached it. I’ve always believed it is better to be positive about matters than to be so down about them all the time.

    Comment by Phyllis Zettler — January 4, 2019 @ 7:50 pm

  6. I’ve known you for almost 15 years and you never cease to amaze me. You can make me laugh and cry within seconds of each other – and you did it again with your classic humor and honesty on full display here. I’m sharing your story with my friend’s Dad who was just diagnosed. I know it will help him and so many other people.

    Comment by Beth — January 4, 2019 @ 8:47 pm

  7. I met you several years ago and found you to be witty and delightful. I’ve kept up with you on Facebook, and you continued to entertain me at times, and make me ponder life situations at others. I survived colon cancer in 2014 when the surgeon at Vanderbilt removed over 3 foot of colon, a section of my stomach, and a large chunk of abdominal muscle. I remember arguing with my surgeon before the operation that I absolutely did not want a colostomy. (My mother had died of colon cancer, and she lived with me for the last 6 months of her life. I was her “Jeffrey”.) I remember telling the surgeon that if I woke up with a colostomy bag, they would need to keep me sedated and strapped to the bed. Yes, I know that I was scared and irrational, but such is the stigma associated with “ostomy”. My first conscious recollection in the recovery room was frantically fumbling at my stomach trying to decide if the bandaging was a colostomy pouch or just bandaging. My relief was immense. It has been a learning curve regarding bowel movements since my surgery. A nurse explained that your colon is the early warning signal for a bowel movement. Pre-surgery, your colon says “We’re going to need to go to the bathroom soon.” Post-surgery, your colon days ” We’re going to need to go to the bathroom… RIGHT NOW! ” Life is not a “given” after cancer, and I still face the possibility of recurrence. What I do know after reading your article is that I will be braver and more comfortable after reading your article should the future hold unpleasant surprises. You are bright and funny and incredibly brave. You still entertain me, but now, you inspire me! Thank you for sharing this most intimate and personal story.

    Comment by Karen Smith — January 5, 2019 @ 11:07 am

  8. What an inspiration. Thanks for sharing your story.

    Comment by Gaile Owens — January 5, 2019 @ 3:03 pm

  9. Heidi, thank you for sharing. You are THE most AMAZING person I know. Beautiful, witty, smart, successful, aware, compassionate and a brilliant community activist. You are inspiring.

    Comment by Mark Fessenden — January 6, 2019 @ 8:57 am

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