- Rachel Higgins had surgery to close her anus and divert her stool through a hole in her abdomen.
- Since getting a colostomy bag, she said she's been able to eat more and live a normal life.
Rachel Higgins had mixed feelings about getting her anus stitched shut for life.
On the one hand, the 21-year-old was ready for a long-term solution that would keep her intestines inside her body. For four years, Higgins said she felt like a "test dummy" and a "lab rat" as doctors tried to treat her chronic rectal prolapse, a condition where her large intestines were constantly slipping out of her body through her anus.
"I had no ability to work or leave my house — not that I wanted to, because I would just hold my hand under my ass to hold up my intestines all the time," she told Insider.
Getting a permanent colostomy would ensure that her intestines stayed in place, but it also meant she would always need a bag attached to her abdomen to collect her poop. The surgery involved removing part of her digestive tract and re-directing her waste out of a hole in her abdomen, called a stoma.
Higgins told Insider she was terrified in the weeks leading up to her colostomy in March 2022 — about the possibility of complications from surgery, but also because she didn't know anyone who had an ostomy bag. Some people get temporary colostomies to let their organs heal from injury or disease, but Higgins said she needed a permanent fix.
She said she turned to social media while awaiting the surgery. On TikTok, she discovered creators Paula Sojo and Sarah Odessa, who posted about their digestive disorders and wore their ostomy bags with confidence.
Since getting her own bag, Higgins has been sharing her story with the goal of helping others, just as veteran "ostomates" were there for her.
@aquariusrayray its okay im used to the looks lol. i survived #ostomyawareness #ostomypositivity #ostomybag #colostomybag #colostomyawareness #confidence #dontletanythinggettoyou #itspartofyourstory ♬ horrified looks from everyone in the room - tswiftmusic
Past surgeries failed to fix her prolapse, but a colostomy did the trick
Higgins told Insider she started experiencing rectal issues after she was sexually assaulted in 2018. From that point on, she said she has faced complex post-traumatic stress disorder on top of the physical pain of her prolapse.
Before she had her colostomy, Higgins said she had five other surgeries that were meant to treat her rectal prolapse. However, the attempts never helped for more than a couple of weeks, she said.
"Seeing it was honestly the worst part," she said. "Being able to look down and see your intestines out of your body, just hanging in the toilet, it was disgusting. I don't know how I pulled through it."
@aquariusrayray Replying to @waltdisneysballs wonderful question!! thank you for this! #ostomyawareness #colostomybag #colostomypositivity #ostomypositivity #saawareness #ostomylife ♬ original sound - rach
Her rectal prolapse made it impossible to wear normal underwear, so she spent several years in adult diapers to avoid a mess and hold up her trailing organs. Once she had the surgery, Higgins said she was "so damn excited" to be able to wear thong underwear again, surgical stitches and all.
Getting a colostomy also helped her eat normally again
The prolapse also affected Higgins' ability to process food, since her digestive system wasn't working properly. Before the surgery, she said she weighed 84 pounds and was throwing up most of what she ate.
Four weeks after her surgery, the Arkansas native said she went out to dinner with her parents and it was like she had never been through the prolapse. She was able to sit and have a meal uninterrupted by discomfort.
While some people need to follow a specific diet after ostomy surgeries, Higgins said she has been able to eat whatever she wants because her surgeon preserved most of her large intestine. She's also able to work out and go swimming with the help of bag covers and straps.
@aquariusrayray #iwerkout #workout #colostomybag #ostomysupportband #selflove #healing #ptsd #ostomyawareness #ostomypositivity #ostomylife #ostomywarriors #colostomypositivity ♬ original sound - rach
She squeezes her stool out of an ostomy bag every day
Higgins' ostomy pouch has a Velcro closure, so she can simply empty the bag's contents into the toilet. She said she uses lubricating drops and an anti-odor solution, so the process isn't as gross as one might imagine.
Every three to five days, she changes out her bag for a fresh one and cleans her stoma, the intestinal stump that protrudes from her skin. Changing the bag takes just a few minutes since she's gotten used to it.
@aquariusrayray #ostomyawareness #ostomypositivity #colostomybag #confidence #colostomypositivity #colostomyawareness #dontcareabthaters #medicaldevice #power #lifesaving ♬ Thats the whole point - Cas Logan
Higgins' TikTok followers have a lot of questions about how she poops, and she's been candid about the daily details of life with an ostomy bag. Not all of the commenters have been kind, though, and she said the harassment has made her reconsider her presence online. At one point, she even contemplated deleting her TikTok account — but decided not to let the haters win.
"I'll never be ashamed of my ostomy or my story of how I got here. It just makes me who I am and I'm proud of that," she said. "I'm a fighter. Anyone with an ostomy is."