The Beauty of Ostomates Worldwide

Happy #OstomyOctober, everyone! After doing a piece about things we can do with an ostomy last year, it only seemed appropriate this year to highlight how diverse the population living with all types of ostomies is. Just to backtrack, many of you might be wondering what an ostomy is. According to the United Ostomy Associations of America (UOAA), “ostomy surgery is a life-saving procedure that allows bodily waste to pass through a surgically created stoma on the abdomen into a prosthetic known as a ‘pouch’ or ‘ostomy bag’ on the outside of the body.” There are generally three types of ostomies: (1) colostomy, (2) ileostomy and (3) urostomy. A colostomy takes a resected portion of the colon and brings it out to the abdominal wall for a person to defecate. An ileostomy is a similar process but it uses the small intestine instead of the colon. And a urostomy uses a small portion of the colon or small intestine to move urine from the kidney through a stoma into an ostomy bag. According to the UOAA, there are approximately a million ostomates in the United States alone. So it behooves us to learn more about what an ostomy is and how life-altering and life-saving it can be. Having ostomy surgery saved my life and continues to every single day as I described in a recent article I wrote for Everyday Health. But ostomy surgery also came chock full of taboos. Many of us from around the world face all sorts of stigmas, including being discriminated against from getting jobs, not being considered marriage material, not being allowed to enter temples or places of worship, and being told we are ‘smelly, unclean, or foul’ and therefore ‘unloveable.’ My aim today and everyday is to shatter those stigmas and shed light on all the beauty and diversity of ostomates from around the world. It doesn’t matter what age, race, religion, ethnicity, sexual orientation or gender we may be, we are beautiful and we are worthy of love and respect. So what better way to celebrate Ostomy Awareness this October than to showcase how universally life-changing ostomies are for patients around the world? Here goes nothing!

MJ from Australia

MJ is a graphic designer, illustrator and ostomy advocate from Sydney, Australia. She was diagnosed with Ulcerative Colitis at age 17. She suffered for years with worsening symptoms and side effects from medication including anemia, anxiety, IBS, fissures, lupus, liver disease, insomnia, weight gain and hair loss. After a non-stop flare for 6 years, failing all medical treatments and developing pre-cancer bowel cells (dysplasia) it was time for a total colectomy. Age 35, after battling UC for 17 years, she got her ileostomy and hasn’t looked back. Some words of wisdom from MJ: “Having an ostomy is like ‘Life 2.0’ – no more pain, anxiety or medication. As an ostomy advocate, I create art to raise awareness, reduce the stigma and show how positive life can be as an ostomate. I fill my Instagram with ostomy artwork, create t-shirts and in 2018 I was proudly sponsored by @omnigoncaresolutions to paint an ostomy awareness mural at Bondi Beach in Sydney, Australia. I hope to paint more murals around the world. The best part of my journey is connecting with all the amazing ostomates on Instagram from around the world – it’s the best community!” **Cover image credit: MJ** Follow MJ on Instagram: @emjayuc

Aisha Islam from Saudi Arabia

Aisha has been living with Crohn’s Disease for the past 13 years. She’s of Bangladeshi origin but currently resides in Saudi Arabia. She was first diagnosed at the age of 14 in 2006. Crohn’s has affected both her colon and rectum and she’s suffered several complications over the years such as abscesses and fistulas requiring surgery after surgery. In 2017, she had her most complex surgery, a total colectomy with a permanent stoma. That was life-changing until recently when she had to have a total proctectomy, from which she is still recovering. Aisha says, her journey with Crohn’s, as difficult as it’s been, has made her a stronger person and given her the strength to keep fighting every day.

Rakhee Patel from England

After experiencing the symptoms of Crohn’s Disease for more than 10 years, Rakhee decided to opt for ostomy surgery in her early twenties. Mentally accepting her stoma wasn’t really difficult for her because she was willing to do anything to make the pain end. Rakhee says that much of my childhood and early youth was ‘lost’ to illness but for every opportunity that Crohn’s took away, her stoma has given her 10 times more! The concept of a stoma can be difficult for others to digest but she tries to demonstrate that ostomates can be loving, capable, valuable members of society just like everyone else. Rakhee currently works full-time in the public sector and thanks to her ostomy, she says she has had the good fortune of traveling to various countries in Asia and Europe. Although her anatomy is now so different from that of a ‘normal’ person, she’s never felt more normal in her entire life and she thanks her ostomy for that every single day.

Alicia Aiello from the United States

Alicia is a Philly girl, born and raised, and an advocate for LGBTQ+ health. Alicia was diagnosed in 2004 at the age of 14 with ulcerative colitis. Within 3 months, she had to have her colon removed as an emergency. Her colon had perforated during a colonoscopy and she woke up to an ostomy, which sent shockwaves into her teenage years and created a love/hate relationship with her bag. Even though she knew the ostomy had saved her life, it still made her feel out of place amongst her peers. As a result, Alicia opted for j-pouch surgery which led to years of complications, the worst of which were the rectovaginal fistulae she developed. She eventually had her takedown surgery and lived with a half-functioning j-pouch for one year before needing another temporary stoma diversion and more massive RV fistulae repairs. Opting for a SECOND takedown with some hope that “this would be it” ultimately led to the same bout of complications with fistulae. Alicia’s diagnosis was eventually changed to Crohn’s Disease. After a few more failed fistula surgeries and a 7-year stint on biologics, another RV fistula reared its ugly head. In March of 2019, she had her j-pouch reconstructed and was given a temporary ileostomy. After over 15 years of battling with the complications of IBD and fistulae and having her third ostomy, she has decided that she may not reverse it this time. Having this third ostomy has shown Alicia that there is so much more to life when you give yourself the freedom to actually live it. Today Alicia works as a freelance editor, producer, videographer, and photographer. She also serves as the President of Girls With Guts, a non-profit organization that works to empower and support women with IBD and/or ostomies. Show Alicia some love by following Girls with Guts on Facebook, Instagram & Twitter: @IBDgirls!

Dinesh Kundnani from India

It was 5^th March, 2017, when Dinesh came to know that he was diagnosed with colorectal cancer at the age of 28. At first, he was so confused and at the same time, he was expressionless. He had heard the word “CANCER” but never knew exactly what colorectal cancer is. When the doctor told Dinesh he would live with an ostomy bag permanently, he didn’t even know what an ostomy bag was. Dinesh and his father consulted a specialist in Mumbai and soon thereafter, his treatment began: first he went through radiation followed by surgery and chemotherapy. He remembers thinking, “what would life with an ostomy be like?” When he was going through radiation therapy, he would spend the entire day Googling the ostomy and finding blogs of ostomates online. Dinesh says he felt so inspired by people who are living happily with an ostomy, particularly by Tina and her experiences, as shared on her blog. Now Dinesh is living with an ostomy and really grateful for it. Sometimes he feels upset that people still think having an ostomy is a stigma and they would rather not talk about it. He has unfortunately also faced discrimination from the job angle in that many people do not hire ostomates in India and around the world. But Dinesh says he looks at that as a positive as it allowed him to start his own business. Dinesh says he’s so blessed to have a very supportive family and a few friends who always help him feel proud to be an OSTOMATE. In his free time, Dinesh writes on his blog to spread awareness and destigmatize life with an ostomy in India. Check out Dinesh’s blog ostomybagcare.com and the amazing work he’s doing to raise awareness about ostomy life in India!

Zeynab Rezai from Iran

In a country of 80 million, Iran has nearly 70,000 people living with an ostomy. And of those, an even smaller percentage are of Estonian origin like Zeynab. Zeynab was 17 when she had a total colectomy for ulcerative colitis (with polyps) and woke up with an ostomy. She’s 29 years old now and has had an ostomy for 12 years. She says she loves her ostomy because it saved her life and she describes how being a teenage girl with an ostomy was particularly difficult in Iran. There is a lot of stigma, a lot of judgment and shame she has felt over the years. In recent times, Zeynab has been writing on her Instagram all about how an ostomy is a life-saver and that it is “not dirty, just a different way of life.” She expresses sadness at not being able to swim in pools because her ostomy is considered dirty by those around her. She says, “people may deny the person, but that’s because there’s no education or awareness on how much quality of life the ostomy can give back.” Zeynab is a big believer in God and that he will help her get through this. Additionally, her mother has stood by her side and helped her through all her ups and downs. She says, having an “ostomy means you have survived a disease and you’re meant to be alive. Don’t be condemned to feel dirty.” By sharing her journey on Instagram, Zeynab is, in her own way, helping to advocate for life-saving ostomy surgery and against the cultural taboos that exist around it in her respective community.

Gaylyn Henderson from the United States

At the age of 14, Gaylyn was diagnosed with Crohn’s Disease. Due to the severity of her disease, she had her entire colon removed leaving her with an ileostomy. Gaylyn founded Gutless and Glamorous (non-profit, 501c3) with the mission of empowering those living with or contemplating ostomy surgery and to erase the negative stigmas of having an ostomy. Gaylyn graduated from Benedict College, with a BS in Biology and from the University of South Carolina, with a Masters of Public Health. She volunteers every summer at Camp Twin Lakes for children living with IBD. She also works closely with the Georgia and National Chapters of the Crohn’s and Colitis Foundation. Gaylyn serves as the Ostomy and Fashion Editor for Companion Magazine for IBD. She alsos serve on the Inaugural Patient Advisory Committee and she is a Social Influencer for the National Crohn’s and Colitis Foundation. Through the power of social media and her own efforts, Gaylyn has come to be recognized as a leading public and social figure raising ostomy awareness. She was featured in the groundbreaking Aerie by American Eagle 2018 Fall bra campaign and is now a featured model for Aerie. She was also awarded the first-ever Catalyst for Online Community Engagement Award by the Crohn’s & Colitis Foundation. Through Gutless and Glamorous, Gaylyn aims to encourage young women and men and her goal is to help erase the stigma of having an ostomy once and for all. Follow Gutless & Glamorous on Facebook, Instagram & Twitter to learn more about Gaylyn’s fabulous advocacy work!

Talat Cankiymaz from Turkey

Talat was diagnosed with colon, liver and lung cancer 17 years ago and since then has received a permanent ostomy. He is the founding president of the Turkish Ostomy Association in Izmir, Turkey, also known as Kolostomili ve Ostomililer Derneği. The mission of his organization is to empower ostomates like himself and help them create long-lasting friendships in the ostomy community within Turkey. Talat told OYC that the ostomy gave him his life back when he felt like he didn’t have a shot at life again after the spread of virulent cancer throughout his body. Even though living with an ostomy is hugely stigmatized in Turkey, he’s happy and health now. The best part of becoming an ostomate, he said, was that he met his wife and fellow ostomate, Filiz, during association activities and they have been married for 4 years now. Together they serve their ostomy community to help destigmatize life-saving ostomy surgery in Turkey. Follow @KolostomiliVeOstomililerDernegiKolonKanseri on Facebook & @ostomy_turkey on Instagram to check out how Talat & his wife are raising awareness in Turkey!

Ana Evelyn Machado Rodrigues from Brazil

Ana is a 2-year-old ostomate from Brazil. She was born with a perforated anus due to a fistula from her anus to her vagina. She’s suffered from many infections and a lot has gone into saving her life, including giving her a colostomy bag after birth. Ana has had multiple operations, the most recent of which was done on October 10th to reconstruct her anus from the massive perforation. She is still recovering from this recent surgery but the thought is that her ostomy may be reversible if the reconstruction succeeds. Time only will tell the results of this recent operation but her mother shares how grateful she is for ostomy surgery in not just saving Ana’s life but for keeping her alive. She refers to Ana as “minha princesa guerreira,” which means “my warrior princess,” such an apt name for Ana and for all of us who have fought through our struggles with ostomy life and risen above. There is much stigma in Brazil and Ana’s family has been subject to the many taboos around living with an ostomy. But what’s truly admirable is that Ana’s mother continues to create awareness via her daughter by showing that ostomies save lives across all ages and aren’t just for the elderly population. She is also shedding light on the deeply stigmatized topic of fistulae and the havoc they can wreak on the body. Hope Ana continues to improve and is able to live the fulfilling life she so deserves!

Rohan Kumar from India

On Wednesday, 20th March 2019, everyone around him was celebrating the Indian festival of colors, Holi. Rohan, on the other hand, was on what seemed to him like his deathbed. He was undergoing chemo and radiation. Rohan was diagnosed with colorectal cancer at the young age of 24, a growing epidemic in young populations around the world. Doctors said it came from a case of unbridled IBD, which he didn’t know he had at the time. After surgery, Rohan was given a permanent colostomy. And it was difficult to accept as it has been for all of us. Plus, the stigma in India was something he had to consider as well. Many thoughts went through his head about relationships, careers, social acceptability, etc. He searched all over India for the best colorectal surgeons and met one in Ahmedabad, India, who decided he could try to reverse his stoma. After spending 11 hours in the operating room, Rohan woke up to his surgeon saying that the cancer had spread throughout the rectum and there was no hope for reversal. Today Rohan has accepted life with a stoma by getting inspiration from a number of ostomates online. He hopes to start his own advocacy work to destigmatize life with an ostomy in India. Even though his journey isn’t over yet and he continues to undergo chemotherapy, he says, “We only live once, right? Wrong, we die once.” Meaning let’s live it up and make the most of the circumstances we’ve been dealt!

Brenna Janzen from Canada

Brenna is 33 years old and has Ulcerative Colitis and an ostomy. She currently resides in Watrous, Saskatchewan, Canada with her husband, their two kids and a menagerie of animals. She was diagnosed in December 2008, after a year of symptoms. She went through several different medications, which included mesalamine, Imuran, Prednisone, and 2 different biologics. Very few medications worked for her and the ones that did work didn’t work for long. It was frustrating and she would want to give up. She would have many moments where she would sit and cry. In 2018, she started failing Prednisone, the medication that helped her the most, so she was referred to a colorectal surgeon. In August 2018, she had her first surgery for UC. At first, she was worried she had made a mistake and didn’t try everything she could have, but soon thereafter, she fell in love with her ostomy. Her surgeon and GI doctor told her that her UC would be cured when she had her colon removed. However, Brenna says her health is not 100% because of the inflammation in the 15 cm left of her colon and other extraintestinal issues caused by UC. While Brenna is far from cured, the ostomy gave her her life back and she couldn’t be happier with her decision today!

Lizzie Moyo from Zimbabwe

Lizzie was diagnosed with IBD at the tender age of 12. Her teenage life was very difficult as she was always in and out of the hospital or bedridden at home. She lived in isolation and couldn’t go out to play, go to church or travel on vacation due to her disease. Lizzie was also unable to socialize with anyone because many friends, extended family members and neighbors isolated her and her family. She shares that living with IBD in Zimbabwe has been painful due to the stigma of her disease and ostomy. Not only did she have to deal with the physical pain of disease and surgery, she dealt with family members who believed her disease was not a normal illness but rather someone using black magic to harm her. Because of this, she went with family to healers who applied traditional herbs, and had her drink wild roots and eat ants to remove the “bad spirits.” Nothing worked and all it brought about was pain and division in her family since some family members and close neighbors were accused of causing her illness. Eventually, Lizzie was given an ostomy and still struggles with the shame and stigma around it in Zimbabwe. There is a belief that it is dirty, foul and unclean. It has been a long and very isolating journey for Lizzie but she has the support of her immediate family and especially her sister, Linda, who have all encouraged Lizzie to share her story and work with the International Ostomy Association to erase the stigma around life-saving ostomy surgery.

Daniel Garza from Mexico

Daniel was diagnosed as HIV+ in 2000 and developed anal cancer in May 2015. He ended up with a colostomy in April 2016 after surgery which removed parts of his rectum and anus due to cancer. Daniel is a very prominent LGBTQ+ health advocate whose main focus is on HIV Education and Prevention. Daniel’s family is from Mexico and he is now settled with his partner in California. In many ways, Daniel has had to deal with several layers of stigma in being gay and dealing with AIDS, then anal cancer and now an ostomy. He’s had many closets to come out of and being of LatinX descent and a devout Catholic, he was discouraged from talking about these aspects of his life, which are not just very real, but are focal points of his life and career. While it has been hard for him to overcome the need for a colostomy, he has accepted it and his partner has been very supportive throughout his journey. As difficult as it has been, Daniel is a real example of rising above shame and stigma to really own his identity and his health conditions to help those around him. Show Daniel Garza some love on Instagram: @iamdanielgarza!

Anna Englund from Sweden

Anna was diagnosed with colorectal cancer at the age of 45. She went through a “watch and wait program” after one week of radiation. Six months later, the tumor had returned and it was all so so hard for Anna to wrap her head around. She had surgery and was given a temporary ileostomy for 7 months to rest her colon and rectum. Before the surgery, she didn’t know anyone with an ostomy but she was mentally prepared for it since she was given fair warning about it by her doctors in an earlier stage of her treatment. During this time, Anna’s family members and friends began to decorate ostomy bags to cheer her up. And as part of her acceptance process, Anna started the Instagram account called @attlevamedrektalcancer, or “Stoma of the Day” in Swedish. Everyday she would share a short story about her day, her recovery or the artist of that particular ostomy bag. In this way, Anna turned what she knew to be a lemon into lemonade: she focused less on the stigma and what it meant to have an ostomy bag and came to appreciate what the bag offered her because it truly saved her life.

Hope you all enjoyed this piece! Please share the article if you think it can help those around you! And feel free to leave feedback and comments as always! I love hearing from you all!