Cassidy Bargell: ‘Representing people with an ostomy is important’

USA Eagle Cassidy Bargell made her first international start in the last round of WXV 1 against Ireland.

Bargell, who plays scrum-half, spoke to exclusively RugbyPass about her journey to become USA Eagle number 323 which saw her overcome the setback of ulcerative colitis which required multiple abdominal surgeries that resulted in her now living with an ostomy, as well as recovering from an ACL injury.

Using the strapline No Colon still rollin', she regularly shares her ulcerative colitis and ostomy journey on social media and gave a TEDx talk on the subject in Boston in 2022.

Growing up in Colorado, Bargell took part in multiple sports such as skiing, gymnastics basketball, and volleyball before finding rugby in eighth grade. Her local high school, Summit High School, has a long-standing girls’ rugby programme for sevens, excelling at multiple state championships.

Initially just wanting to spend time with friends, she took up the game in middle school with her best friend, whose father was South African and had played rugby. Bargell continued to play rugby at Summit, and went on to be recruited to play D1 rugby at Harvard.

Many of her high school teammates were also selected to play rugby at prestigious universities, and she notes the significance of the sport providing the opportunity to many women who were the first generation in their family to have attended university.

As a sophomore, Harvard’s Bargell was a finalist for the MA Sorensen Award for best women's collegiate rugby player which has been won by the likes of Ilona Maher, Spiff Sedrick, Hope Rogers, and most recently, Freda Tafuna.

"I started doing some USA Rugby pathway things when I was younger. I went to college and in my senior year, right after the pandemic, I got really sick and ended up being diagnosed with severe acute ulcerative colitis.

“I was hospitalised and I had several surgeries after that to remove my large intestine, I tried to get an internal J-pouch to reverse the surgery that gave me an ostomy. I play with an ostomy bag, my intestine comes through my abdominal wall and I have a bag over the top of it,” she says, pointing out her bag under her jersey without hesitation.

“I had some surgeries to try and reverse that, they didn't go the way we expected them to so I went back to the ostomy and I'll probably have the ostomy for the rest of my life. When all of that was happening I also randomly tore my ACL.

“I had a lot of moments of doubt that I would ever be able to play really competitive rugby ever again. Being able to do it through all of that has been awesome. I believed my doctors when they told me I could and I believed everyone else when they told me I could and just went for it.

“It's been really cool to be able to do that and representing people with an ostomy is really important to me.”

Bargell has been forced to adapt to her new way of life, both in day-to-day and as a rugby player. She goes on to explain what goes into her preparations to play rugby.

“Right after surgery, you have to be careful lifting and everything like that so you have a process of regaining core strength which is still something I'm working on constantly. When I play, I play with a thin pad, maybe two millimetres, over my stoma, which is the actual part of my intestine that comes out. I put that underneath a Stealth Belt which is essentially a compression belt around my abdomen.

“I don't wear any hard protection or anything like that around it, obviously because it's rugby and it could actually cause damage if you put anything else. Your body is pretty resilient, I've gotten a hit straight in the bag and it's been fine.

“I wear the compression belt mostly because it's essentially like a surgically created hernia, so the belt helps to protect your muscles a bit. Other than that, it was really just the first tackle session I had one of my teammates essentially fall over for me as I was hitting her. You have to get used to the idea that being hit in the bag is okay. When I'm playing, I don't think about it at all.”

It’s not just physical adaptations she has to take into account, and other more nuanced changes have meant her routine looks a little different to that of her teammates.

“Off the field, the biggest thing I have to adjust is my eating schedule. I also lost a lot of extra small intestine when I had my J pouch created, so knowing what I can eat, when, and how far before practice.

“My eating schedule might look a little bit different than my teammates. I couldn't eat a big lunch before we train in the afternoon, so I just have to eat more before and more after. That's still something too I'm trying to figure out, but that's the most noticeable difference for anyone else.”

Amidst her abdominal surgeries, Bargell had yet another medical hurdle to overcome, an ACL injury.

ACL injuries are something far more sportspeople can relate to, which brought into perspective the stark contrast between the isolating nature of dealing with a more uncommon medical condition.

Such an injury alone is a significant setback for anyone, and coupled with her ongoing surgeries and subsequent recovery, Bargell was presented with new challenges.

“Right before I was supposed to get my third surgery to reverse the ostomy, which was originally the plan, then I tore my ACL. That was really difficult. I was also lucky enough that I had a lot of people who had gone through something similar, which was not the case with my abdominal surgeries,” she said candidly.

“I had people who helped support me through that [ACL]. I tore my ACL in October, I got my takedown surgery, that's the surgery that reverses the ostomy, over Thanksgiving break. I had a fistula form right after that surgery so I got emergency surgery to go back to an end ileostomy after that in December, and then pushed my ACL surgery back quite a bit so I could heal enough from the abdominal surgeries in order to use crutches.

“I got my ACL done in January and that was when I was out of college so it was hard to find the balance of one, now I'm an athlete that's going to have an ostomy for a long time, which was not the mindset I had gone into those surgeries with originally, and then also rehabbing an ACL which was a long, hard journey.

“I ended up taking a full year to rehab my ACL and then I actually got back into rugby because I found a proper FIT Touch game in Boston and started playing with them,” she said during our second conversation, which took place while she was in Arizona for FIT Touch national a few weeks after WXV.

Throughout her journey with severe acute ulcerative colitis, Bargell had her sights set on returning to the rugby pitch, sometimes in a literal sense.

“I remember when they first started talking to me about the surgeries, my first question to my surgeon was 'Will I be able to play rugby again with this?'. She said 'You're definitely going to be able to play rugby again, we have no worries.' I then scoured the internet for other people who play rugby with stomas and found them.”

She goes on to recall her memories of watching her team run out from the top floor of the hospital. Returning to her beloved Harvard team was always on her mind.

“It was definitely one of my first thoughts," she said. "I was hospitalised originally in a hospital close to Harvard and if I went up to the highest floor in the hospital I could see the field. I just remember going up to that seventh floor the first week I was hospitalised and my team was playing Brown University and I watched them run out onto the field to warm-up to play Brown. I never really stopped thinking about my team or rugby through all of it.

“It gave me a better perspective on rugby and the important parts of rugby for me at least because my teammates were the ones who supported me through the most challenging days with it. I knew I wanted to play again, I knew I was going to play again once I found out that other people were playing rugby with a bag, I was pretty sure.”

In addition to the physical aspects and recovery, she also has to deal with the mental toll of having to come to terms with changes that had been made to her body.

“Mentally it was really hard. There were a lot of things I struggled with mentally, especially with the abdominal surgeries. There are some things that anyone would deal with if they got an ostomy of body image and losing a lot of your feeling of control over your own health. That's a big mental hurdle you have to get through of grieving your old self and your health,” she admitted.

“It is like a grieving process, you lose a lot. That was something I definitely went through. As an athlete, I think it's hard because your body is what lets you do what you love to do the most. To feel like your body is not your own and that it's no longer fully healthy or that you have this thing that is so different and no one can really understand. Your teammates can't understand, that was definitely a big difference for me between the ostomy and the ACL.

“People can understand the ACL, but no one could really understand the ostomy. Mentally, it was firstly, taking the time to be upset about it. At first, I tried to be super positive, especially when I thought the ostomy was going to get reversed. I was optimistic and positive, but I also think that I accepted it more once I realised how difficult it was and how much I wish it hadn't happened to me.”

A big part of her journey to acceptance has been having honest conversations with those around her, something which has been welcomed with open arms by the USA team and has proved to be cathartic.

“Even though I would never change it, it's something that is hard and makes my life harder every day. Also, opening up to my teammates and my friends about the parts that are really difficult, like when I am in pain or the acid from the bag is burning my skin,” she explained.

“The more I opened up about things like that, the easier the mental process became because I just accepted it more as my reality instead of trying to always present it as something that I was super fine with and there was no problem about it.

“I would never change it, it's a big part of who I am and something I identify with now, but also it's not something I would ever say is easy or I would ever wish on anyone else. Even at WXV, I got to give a presentation to the team and staff because International Ostomy Awareness Day was actually on the day that we played France, October 5th.

“That week I got to give a presentation to the team and staff about what an ostomy is and also the parts that are hard for me, and why it's important for me to share. The more that I talk about it, not only I think it could be helpful to other people, but that's what's also been helpful for my mental processing of the entire thing.”

Nowadays, as she establishes herself on the global stage as a rugby player, Bargell remains committed to educating others about inflammatory bowel disease.

“I work for the Crohn's & Colitis Foundation which is a non-profit based in New York City. I work fully remotely but it's a non-profit that does research but also the goal is to improve the quality of life of patients living with the disease and also push for cures for Crohn's & Colitis. I work on the data team for a programme called IBD Plexus which is a really cool longitudinal data programme.

“There are different cohorts where they've collected data on patients for many years and my role is mainly to help researchers who have questions about the disease. I help them use and understand the data we gave. It uses a lot of real-world evidence rather than clinical trials which I think is really interesting as a patient because no patient's journey is ever alike. It's cool that I've been part of the research that's looking to understand patients' full journeys and their full lives.”

She finishes with advice to those who may be in a similar situation: "I want to share that anyone else who ever gets one knows that they can do it. There are definitely other rugby players out there, I've found some of them out there that have bags and they all encouraged me that I would be able to do it.

“I think it's really important not just for rugby but if you get an ostomy, health things happen, there's kind of this idea that you have to stop doing what you're doing or your whole life is going to change.

“I just wanted to show that's not true and I think it's important because there are going to be more people like me, more girls who have bags that want to play full-contact sports and so I thought sharing was important for that reason.”

Find out more about the Crohn's & Colitis Foundation here.

Find out more about Crohn's and Colitis UK here.