"I Had an Ostomy—and It Changed My Life"
For these people living with Crohn's disease, ostomy surgery made everything from the ordinary to the extraordinary possible.by Jennifer Rainey Marquez Health Writer
If you have Crohn’s disease, the prospect of an ostomy might seem like a dreaded last resort. But for many Crohnies, getting the surgery, which re-routes the colon or small intestine to an opening in the abdomen, is a gamechanger that gives back control and quality of life. (Imagine no more running to the bathroom dozens of times a day.) Ostomy, called a colostomy if the surgery’s performed on the colon and an ileostomy if done to the small intestine, is surprisingly common. Every year, 100,000 people get one, according to the United Ostomy Associations of America, though if you met an ostomate you’d never know it, thanks to advances in treatment like discreet, odor-proof pouches, which collect the waste. But is an ostomy something to hide? Nope! These Crohnies are saying goodbye to stigma and sharing how their surgery changed everything for the better. See their stories for yourself!
“I found my husband!”
Amber Wallace, 28, Sevierville, TN
“Before I had an ostomy about three years ago, my self-worth was at an all-time low. I’d enrolled in college, but hadn’t been able to finish because I was so sick. I was constantly looking for the closest bathroom, and often felt too fatigued and nauseous to get out of bed. I was hospitalized so often for severe Crohn's inflammation that one semester I had to withdraw completely; other semesters I had to take a reduced class load. Meanwhile, all my friends were graduating and going off to get their master’s degrees, and I hadn’t even been able to earn my bachelor’s. Since my surgery, I have been able to finish my degree and become a high-school chemistry teacher. Now I’m in graduate school to earn my master’s degree in secondary education for life sciences. That’s a big deal for me, because I know how hard it is to manage school with Crohn’s disease. While surgery is not always a cure-all, my Crohn’s has been in remission for over three years. I can eat the foods I enjoy, stay nourished, and keep my energy levels up, allowing me to function and thrive.
“Crohn’s had also taken a huge toll on my relationships, because I wasn’t comfortable communicating my struggles. After my ostomy, I finally started to open up on my personal social media, and a friend from high school reached out. It turns out his grandmother had an ostomy surgery two years earlier. I was single when I had my ostomy, and I was so worried that nobody would want to date me afterwards. But this past summer, he and I got married. We joked that my husband knew how to change an ostomy bag before I did!”
“I can support my family, which is the biggest gift.”
Alison Rothbaum, 40, Cincinnati, Ohio
“I have four nieces and nephews who are my biggest pride and joy, and my ostomy has allowed me to be involved in their lives in a way that I never would have been able to before. My first niece was born just before my ostomy, and I was determined to be there for her arrival. But it was so tough. At that point, I was attached to the bathroom, and sometimes I’d pass out from the pain. There was no way I could be physically present for my sister, and missing the birth was devastating.
“When my sister had a complicated pregnancy with her second child, I was actually able to go from Ohio to Connecticut to help her—that wouldn't have been possible before my surgery. Today, I can travel to see and support my family, which is the biggest gift. By teaching my nieces and nephews about my condition and my ostomy, I’ve also been able to help them learn to be more compassionate.”
“I became a licensed pilot.”
London Harrah, 28, Fresno, CA
“Since my ostomy in 2018, I’ve been able to become active again. I play sports, I go to the gym, I run, I swim, I hike. But the best thing is my surgery gave me the ability to pursue my dream of being a licensed pilot. I started flying before I got sick, but my illness completely derailed my plans because my medical certificate was deferred. Since the surgery, I was able to qualify for a first-class medical certificate with a special issuance. This not only allows me to fly again, but I can finally pursue a career as an airline pilot. I received my private pilot’s license this past spring, and I am currently in the commercial/instrument portion of my training. Almost everything I do is motivated by my desire to set the best example that I can for my son—to continue fighting for what you believe in and to keep trying to figure out a way to make the rest of your life the best of your life.”
“I feel more ‘myself’ than I have in years.”
Tina Aswani Omprakash, 36, New York City
“As an Indian American, getting an ostomy was so culturally taboo that I waited until I was near death’s door to finally have the surgery. I was told nobody would marry me, and I was very afraid that I'd be discriminated against. To my surprise, my ostomy didn’t just save my life—it made me feel alive again! Not only did I marry my boyfriend, since surgery (I had my first temporary ileostomy in 2008, and had my third stoma made permanent in 2012) I feel more myself than I have for years. I can eat, I can travel, I can attend the weddings of loved ones. I’m especially grateful that I can wear beautiful and intricate Indian outfits again, like sarees, lehngas, and churidhars, without worrying about how to get in and out of them in a rush to use the bathroom. I truly feel as though I have my life—and the real ‘me’—back.”
“I was able to go away to college, and I can go to concerts again.”
Alicia Aiello, 29, Philadelphia
“I was only 14 at the time of my first ostomy, but having it allowed me to start high school, participate in activities and live a normal teenage life. Since then, I have had two other ostomies; the procedures were done at different times to allow for rest and recovery in between surgeries, or to repair issues that arose after the original procedure. The ostomies have allowed me to move four hours away to attend college, graduate with my degree, and start working in the film industry as a short-video editor. On a smaller scale, without my ostomy I would not be able to take walks through the park, go to concerts or travel without fear of pain or an accident. In the 15 years since I was diagnosed with Crohn’s, there’s no doubt that the years since my ostomy have been my healthiest and my best.”
“My students can see a chronically ill person who’s thriving.”
Kristen Weiss Sanders, 31, Dalton, GA
“After struggling with Crohn’s disease for over a decade, having permanent ostomy surgery has allowed me to finish graduate school and begin my career as a biology professor. Thanks to my ostomy, I can give lectures and teach multi-hour labs without constantly worrying about running to the restroom. My ostomy also gives me the opportunity to allow my students—most of whom are studying to become health care professionals—to see a chronically ill individual who is thriving. The majority of students graduate from nursing school or even medical school without ever seeing an actual ostomy patient. And there’s a huge shortage of trained ostomy nurses. As a result, many new clinicians dread having to care for ostomy patients and have little experience doing so. I hope that my students will remember their time with me and learn that ostomies are truly life-changing.”
“I go zip lining, I do yoga, I get massages, I travel!”
Stephanie Brenner, 37, Chicago
“I had a temporary ostomy twice in the past, and a permanent one in 2017. Initially my doctor thought I had ulcerative colitis and recommended a j-pouch, which is a multi-part surgery that involves a temporary ostomy. Even with the temporary ostomy, though, my j-pouch didn’t alleviate my symptoms. I was becoming more and more miserable, and I was eventually diagnosed with Crohn’s disease in 2010. Still, I wasn’t mentally ready to get the permanent ostomy until I developed a liver abscess and a rectovaginal fistula (when the vagina and the rectum become connected, causing gas or feces to pass through the vagina), complications that led to septic shock and a stay in the intensive care unit. Since my final ostomy surgery, I’ve been able to get back to work as a licensed social worker, reduce my anxiety, and enjoy life! I started dating my now husband, whom I married three years ago. I go zip lining, I do yoga, I get massages, I travel. I even started my own private social work practice.”
“I used to go to the bathroom 30 times a day. Now I do triathlons!”
Brian Greenberg, 37, Rye Brook, NY
“Before my ostomy, I had zero quality of life. I was going to the bathroom 25 or 30 times a day, having accidents all the time. About five years ago, I had a proctectomy to make my ostomy permanent. It has taken my health to another level. Since then, I’ve gone from bedridden to completing an Ironman Triathlon. If you told me five years ago that I would do a 2.4-mile swim, a 112-mile bike ride, and then a 26.2-mile run, I probably would have given you the middle finger. But now I do a half-Ironman every year. In between, I always have a race on the calendar; it gives me the purpose to live a healthy life with a chronic illness. I’m not entirely pain free; I still have Crohn’s. But I have freedom and control over my life.”
Ostomy basics: United Ostomy Associations of America. (n.d.) "What Is an Ostomy?" ostomy.org/what-is-an-ostomy/