When she’s not on the runway during Fashion Week or gracing magazines, Keyla is doing all she can to be an advocate for IBD. She was diagnosed with ulcerative colitis eight years ago, but this year, she found out she has Crohn’s disease.
“As a child, I always had intense stomach aches, and difficulty going to the restroom. Sometimes I’d even pass out. Doctors always told me it was constipation. It wasn’t until I was at work one day and passed out that my boss convinced me that I needed additional medical attention.”
At that point, Keyla was having 8-10 bloody bowel movements a day. Prior to ulcerative colitis, she was diagnosed with celiac disease and went on a strict gluten free diet. But unfortunately, the symptoms persisted. She got a second opinion and that’s when she was diagnosed with IBD. Keyla recalls that in the beginning moments of her patient journey she struggled to grasp that chronic illness meant her disease was a “lifelong partner” and that IBD would change her life in unimaginable ways.
The journey to an ileostomy
Fast forward two years after her IBD diagnosis and Keyla rushed to the hospital after noticing unexplained bleeding. Turns out she was hemorrhaging from her uterus and was told she had uterine cancer.
“After having a partial hysterectomy and no longer being able to have children, I’m not sure if it was the stress from everything happening but my UC was never able to be controlled after that. From failed medications like Methotrexate and Remicade to looking like Quasimodo from eye swelling caused by Entyvio and having less hair than a toddler from being on Humira. My body and I had enough. My clinical team and I decided it was time to evict my colon.”
In September 2018, Keyla began her 2-phase j-pouch procedure. Unfortunately, the surgeon discovered her colon was much more diseased than he had thought. Keyla’s colon had become fused to her stomach, resulting in part of her stomach to be removed as well.
“For 2 months I felt amazing with my ostomy and was excited for my reversal in December 2018. But shortly after, I began developing chronic pouchitis, could not gain weight, required IV fluids regularly, with a failed midline and then needed a central line. We decided to disconnect my j-pouch and create my end ileostomy in September 2020.”
All was well until January 2021 when Keyla started bleeding from her ileostomy. It was at this point she was diagnosed with Crohn’s disease and started Stelara. After a few hospital stays and some improvement with her symptoms, she began to experience an increase in rectal pain, urgency, and discomfort, so Keyla needed yet another surgery.
October 27th (less than one month ago!) she had her j-pouch removed with a proctectomy and officially made her stoma permanent. She’s recovering from this surgery as we speak.
How Modeling Came into Play
After reading that challenging medical history, you may wonder how Keyla finds the time to focus on a profession. Modeling is something Keyla always wanted to do when she was younger, but she was too embarrassed to tell anyone. She sort of stumbled into it. Keyla had done a fun photoshoot with a friend and those photos were shown to another friend who works in the fashion industry. Before she knew it, Keyla was a published model!
“Sometimes I still can’t believe I’m living my dream despite having health issues. I had the honor to walk at London Fashion Week this year and have been published in magazines out of the US, UK, and Canada.”
SURREAL Lifestyle Magazine and 4 Seasons Magazine have been her favorite features thus far because the publications have allowed her to speak about her IBD advocacy work. Modeling serves as the perfect platform for spreading awareness to others about ostomies and life with Crohn’s.
“I always try to take the time for myself and make sure I am doing the things my mental health needs to stay focused and feel well. I also try to own those feelings. If I’m symptomatic, I try to accept it and openly communicate my struggles with others.”
Keyla says having an ileostomy can make modeling a bit more complicated, especially if she has to wear form fitting or tight clothing. If that’s the case, she ends up having to empty her bag more times than she really needs to. She’s grateful her modeling gigs have followed strict COVID guidelines, which helps her feel more at ease during these uncertain times.
When a project allows, she especially enjoys getting to show her ostomy in photos or on the runway. She chalks that up as her biggest career win of all!
A model mother
Keyla’s main focus whether she’s modeling or fighting a flare in the hospital is her family. She has an 11-year-old son who inspires and motivates her to push through the difficult days.
“IBD has made motherhood challenging. Without chronic illness motherhood can be difficult as it is, adding health issues on top of it makes it more complicated. I constantly question whether I’m making the right choices. But I also tell myself all I can do is try and hope that I’m being a good role model for him.”
It pains her to see how her son gets anxious about her IBD and healthcare. He’s been by her side every step of the way since she was diagnosed after he was born. Despite the highs and lows, Keyla feels her son is stronger because of her illness and has an innate sense of empathy and understanding for others.
If her IBD has taught her anything it’s that good days give us happiness and bad days give us experience. Modeling has enabled Keyla to be comfortable in her own skin and live the life she imagined long before Crohn’s was ever a part of who she was.
There’s more than meets the eye when you’re watching a Chicago Dogs baseball game. Outfielder Brennan Metzger was diagnosed with ulcerative colitis when he was 19 and later re-diagnosed with Crohn’s disease at age 24.
He’s now 31-years-old and didn’t allow IBD to steal his dreams of playing in the big leagues. Unfortunately, his most challenging flare-up happened the first summer he was a professional baseball player. Brennan was drafted by the San Francisco Giants in 2012 after graduating from Long Beach State University. He ended up playing for the Giants until 2015, but his health was not cooperating during that time.
“The flare ups are very difficult, and unfortunately for me it cost me a year and half of my career, but more importantly it almost cost me my life. I needed a total of six surgeries and had a total removal of my large intestines. I’m currently on Remicade and thankfully it is keeping me in remission,” explained Brennan.
His advice for young athletes with IBD—to stay positive and continue to treat your body right despite the uphill battle. Brennan says the struggles with Crohn’s motivate him.
“When I am symptomatic and need to play, I get as much rest as possible, and compete to the best of my abilities. Now, my Crohn’s is just a piece of adversity that I do my best to accept and play through.”
Coping With Life as a Former Ostomate and Current J-Poucher
Brennan had an ileostomy for nine months. Once his body healed from the j pouch construction, his surgeon was able to perform an ileostomy take down and re loop his small intestine back inside his body.
“That was a tough time for me. I went through the struggle in the beginning of not being able to look at it, let alone change my ostomy bag. Once the unfamiliarity of the situation passed dealing with life with an ileostomy got better.”
At that point, Brennan learned to adjust. He reached a sense of acceptance knowing that it was necessary for him to endure this so he could get better. The fact that his ostomy was temporary helped him cope.
“To anybody that is adjusting to life with an ileostomy, don’t let the fact that you are different and have an ostomy bag hold you back from being you. If anything, it makes you unique and tougher than most. You’re a fighter, so keep fighting.”
Brennan is passionate about connecting with as many people in the IBD community as he can. He knows firsthand how lonely and isolating Crohn’s and ulcerative colitis can be, so anytime he can be a source of comfort or a role model for others, he jumps at the opportunity.
Choosing to Play Through the Pandemic
Deciding to play baseball as an immunocompromised player was nerve-wracking to say the least. Brennan says he realized he had two options—live in fear or live his life to the fullest. As a vaccinated ball player, he felt getting the jab allowed him to have some control and not let uncontrollable circumstances affect him.
“I chose not to live in fear and to compete because baseball in the summer presents a sense of normalcy and I think the world needed something to look forward to amongst all the negativity. I am still cautious and try to live healthy and do all the things to keep myself from getting sick. I look at the situation as being cautious, but not fearful.”
When traveling due to baseball, he makes sure to have a roll of Charmin ultra-soft toilet paper handy, because you just never know when you may need to go to the bathroom.
“I always search for the healthier options when it comes to diet. Sometimes it’s difficult and I just have to roll with the punches and accept that I may be taking a few more trips to the bathroom.”
How the Chicago Dogs Step Up to the Plate
The Chicago Dogs baseball team is part of the American Association of Independent Professional Baseball. Brennan is grateful for the organization and his teammates for never making him feel like a burden or less than because of his illness.
“The Chicago Dogs have been incredibly accommodating to my circumstances in having to deal with Crohn’s. They have been able to provide me with comfortable living arrangements and are understanding that there are times where I need to go about my typical workday a little differently than others.”
Brennan’s attitude on and off the field go hand in hand. He tries his best to focus on being positive, having fun, and being present in the moments provided by feel-good days. He loves connecting with others in the IBD community over social media, don’t hesitate to connect with him. Here’s how you can do so:
For anyone with chronic illness, it’s safe to say living with a disease gives you perspective. Your patient experience and journey shapes you in ways you may never have imagined, until you’ve lived it—persevered—and can look back at all you’ve overcome to get to where you are today. In Part 4 (the final installment) of “So, You Have An Ostomy,” we dig deep into what ostomates wish they knew that they know now, how best family members and friends can offer support, and why some choose to show their ostomy and others do not.
What Ostomates Would Tell Themselves If They Could Go Back in Time
Brian Greenberg wants anyone who is contemplating getting an ostomy to know that life doesn’t end after surgery, it begins again. He says after being sick and thinking an ostomy would be worse, it gave him his life back. He went from being in bed and alone to being an Ironman and marrying the love of his life.
“There are a lot of ostomates out there and none of us are recreating the wheel. If you have a fear or question, chances are there is someone who already has created a solution. I went from being bedridden to completing a full 140.6-mile Ironman, which showed me anything is possible. My ostomy has allowed me to not only live a normal life, but a good life.”
Ashley Clark says she used to be scared to leave the house. Her ostomy has given her freedom that she never had before.
“Prior to my ostomy, I didn’t want to make new friends or spend time with people I wasn’t comfortable around, I had no energy and I felt like I was trapped inside this body that couldn’t do all the things my brain wanted to do. Since my ostomy, I feel like I’ve gotten myself back in a lot of ways. I make plans again and I travel and spend time with people I love. I don’t take life for granted.”
When Michel Johnson thinks about when he had an ostomy, he says it not only saved his life, but taught him to reframe the tough times. He believes he became a better person in many ways and that his level of gratitude and compassion for others grew exponentially. He’ll always remember when he had his first bag leak in public the first time he left the house after surgery.
“I was in at a grocery store and struggling to change my bag in the restroom. I got poop on my shirt. I was embarrassed. A lady noticed the supplies in my hand and the mess on my shirt when I went into the restroom. She told me she was a nurse. She had a store employee block the bathroom door and she came in to help me, even gave me her blouse to wear (she had a tank top on under her blouse). I cried and hugged her so tight. Couldn’t believe she was so sweet to me in my time of need. It’s moments like that, which change a person.”
Alison Rothbaum credits her ostomy for allowing her to be alive. She says she wouldn’t have made it beyond age 23 if she didn’t have her colectomy. Since surgery, she’s been able to travel, work, and actively participate in the lives of her nieces and nephews. She advises ostomates to cut themselves some slack and acknowledge how far you’ve come every step of the way.
“You’re learning a new lifestyle of personal care externally and recovering internally. There’ll be days you are so upset, and then there’s days you only remember you have an ostomy when you go to the bathroom. This new life may have not been what you had in mind years ago, it may not be ideal, but it’ll be ok.”
Gaylyn Henderson created Gutless and Glamorous, a non-profit organization, as a way to empower and uplift those living with chronic illness and to raise awareness and erase the misconceptions of living with an ostomy. She doesn’t want others to suffer because of the fear of being stigmatized; it’s her goal to eradicate the stigma.
“Through it all I have learned to remain constant in my beliefs and that is to not let the beliefs of others control how I view myself. I’ve learned the importance of loving myself and staying true to myself and knowing I am capable of overcoming anything. I’ve learned that one of life’s most rewarding challenges is to accept yourself for who you are and all that you are completely and consistently. I am so in love with my new body; my new body saved my life in more ways than one.”
Loved One or Friend an Ostomate? Here’s how you can offer support
Listen. Listen. And listen some more. And be there. You don’t have to know what to say, you don’t need to have the right words or give advice. Let your loved one or friend know they are not alone and don’t pretend to understand what your loved one is going through, because you simply can’t relate (unless you’re an ostomate yourself)! Ostomates say when they complain or having a hard day, they just want to be heard and believed.
Karin Thum says to find your tribe and love them hard, “It may be a friend, or maybe a family member. Someone who doesn’t have Crohn’s or ulcerative colitis may not fully understand. But the right support won’t try to understand. They’ll just want to be there for you. Let them. It’s hard for those closest to us who love us to watch us go through what we do.”
IBD mom and ostomate, Byrd Vihlen, recommends loved ones to ask questions and take the time to learn more about ostomies, the disease, and what this means going forward.
“This surgery is NOT A CURE. Knowing that you care enough to want to be educated means the world. I would also advise that going into surgery, the recovery could be very different than what is described by the doctors, prepare for that emotionally so you can better support your family/friend…and not put any extra unnecessary stress on them during a fragile time. Empathy goes a long way.”
Speaking of empathy, Tina Aswani Omprakash recalls how one of her friends once insisted on watching her change her ostomy bag. As first, Tina says she was freaking out saying no. But now, when she looks back, she realizes that was one of the most supportive experiences.
“She asked questions as I went along and was curious to understand how it worked and why people felt such a stigma around it. It made me feel like a human being and that someone actually cared and wanted to learn and support me. I’d say if you’re close family, be there when the ostomy nurse is teaching how to change the bag. Oftentimes, we are in such a rut and on painkillers that we have no idea what’s going on. Support us, ask questions, be there and take notes. It can only help.”
Kristina Schook, 24, of New York, was diagnosed with Crohn’s when she was eight. She needed an ostomy when she was in high school and says the entire experience was insanely hard on her. Her bag would constantly leak, and it messed with her self-confidence. She says she had to alter what sports she played because of the leakage, but is thankful she was never judged by her peers. When it comes to advice for family and friends, Kristina says, “Just let us rant if we are upset. Don’t tell us you understand because our intestine is literally out of our body. It’s extremely hard to deal with mentally. For me, reversal was a great option and I don’t regret it.”
Jordan Ditty says patience is key.
“This is a big change. There will be a lot of emotions around it whether it was planned and wanted, unexpected, or they were dreading it. Offer to sit with them while they change their bag, watch a movie together, bring them coffee, listen to their frustrations, hold them when they cry, they need your support. While at the same time don’t treat them any different, this ostomy did not change who they are as an individual.”
Lindsay Dickerson says if you care about someone with a digestive disability and ostomy, recognize the mental toll their patient experience can cause.
“We are shuffled from specialist to specialist, appointment to appointment. There are days we can’t function and (personally) I feel worthless as a friend, wife, mother, and person. Educate yourself on your loved one’s condition. Support them when they feel down. Help them understand it’s not their fault, even though we will feel like it is at times. On the days they need that extra help – give it to them. There are days we can’t do it all and need this help, it’s a lifetime condition. Empathy and love are what we need and the more you give of it the better.”
Showing Your Ostomy Bag to Others
Whether or not you choose to show your ostomy bag publicly is a very personal decision. Some people feel empowered by it, others prefer to be more discreet. You do you, boo boo.
Natasha Weinstein says sharing her ostomy with the world is so much fun. When she first got her ostomy, she would put duct tape all over the bag, thinking it would make it more “socially acceptable” for people to see. Then, she realized a few things.
“Number one—duct tape is uncomfortable. Number two—I was going through a lot of bags and duct just to go swimming, which made the bags heavy! Number three—the bags are already skin colored so what was I doing?! Once I got rid of the duct tape, everything got easier and all I had to do was choose my bathing suit of the day. Now it’s become routine to take a post-race photo with Ziggy out wearing my medal because we’re accomplishing and conquering life together.”
Tionna Forchion says being transparent about her life with an ostomy has been extremely fulfilling.
“I hid my bag from family and friends for many years and now I openly post pictures on social media showing my ostomy and it feels so empowering to show the love I have for myself in my entirety, and that includes my ostomy bag. It’s rewarding when other warriors on social media write me messages saying that me posting pics showing my bag has helped them embrace and love themselves flaws and all. That’s really why I do it, to inspire others to love everything about themselves and so other ostomates know they are not alone.”
Sahara Fleetwood-Beresford shares her ostomy with world so that people can see that it’s ok not to be like everyone else. She doesn’t feel embarrassed or ashamed and doesn’t think of her bag as an issue. “It is what it is—it’s part of me. The same as my moles, scars, stretch marks, etc.”
Speaking of scars (or battle wounds as I like to call them), Lindsay says, “I love showing off my ostomy. I’ve had 14 surgeries in my lifetime at this point and the ostomy is a symbol of everything I’ve overcome and how I’ve taken the steps to improve my life for the better. All bodies come in different shapes, sizes, and abilities. I feel confident with my ostomy out and welcome anyone who has questions about it!
Payge Duerre says showing her ostomy doesn’t phase her anymore. She says it doesn’t make her feel empowered, either.
“I post for others. I show for others. I show and post because I’m 110% okay if I get hate or negative comments. I might cry if there are mean people, but I truly post and show my ostomy because I’m confident about it and hope to support others by doing so. My ostomy has completely changed my life for the better. There is no possible way I’d be this healthy version of me with my colon. I no longer shit my pants, I can travel more than five minutes away from the bathroom, I’m not missing every other day of work/school/events because of pain so immense I can’t get off the couch. I don’t have to spend an entire day every four weeks getting my infusions.”
Tina and many others I interviewed, choose not to show their ostomy or their stoma. But each ostomate said they respect the many people who do.
“I don’t feel that I need to show it to talk about it or to empower others. Culturally speaking, I think for me, it’s better left to the imagination. I do show what a stoma bag looks like and show different activities you can do with an ostomy but I think this is an individual’s choice to show or not to show and still feel empowered.”
When Life Comes Full Circle
Over the course of the past few weeks, I’ve had the privilege of connecting with more than 20 ostomates around the world who have candidly and whole-heartedly shared about their personal experience. As someone with Crohn’s who does not have an ostomy, I consider your ostomy a symbol of strength and survival. What each ostomate endures prior to surgery, through recovery, and in life, takes patience and perseverance. It takes strength from within. A strength I can’t even begin to fathom. Ostomies are a visible reminder of the often invisible battles those with IBD and other digestive diseases face while having chronic illness. It’s normal to grieve and be devastated. From what I’ve learned through these warriors, the best way to view life with an ostomy is to think of all the positive it will bring to your life and how it will improve your health and condition. Shifting your perspective and thinking of your ostomy as a gift rather than a curse seems to be the best medicine of all. Thank you for following along through this series. I hope you feel better educated about life with an ostomy and have learned something, I know I did!
Celebrating Ostomy Awareness Day (October 3rd, 2020)
This year marks the 10th Anniversary of National Ostomy Day. This day serves as an opportunity to spread awareness about ostomy surgery.
Twitter Chat (#ddhchat): Diet and Digestive Health Chat about Nutrition for the Ileostomy hosted by ostomate Tina Aswani Omprakash and Neha D. Shah, MPH, RD, CNSC, CHES Friday October 2 at 12 p.m. EDT.