Top 10 Ulcerative Colitis Instagrammers You Should Follow

Patient Expert

When it comes to chronic conditions, support is everything. And one of the positive aspects of being diagnosed with ulcerative colitis (UC), a form of inflammatory bowel disease (IBD), is the community that comes along with it.

UC doesn't discriminate, and there are people from all walks of life who have a UC diagnosis. But sometimes, it can be hard to know where to look to find that community of other UC patients to inspire you. That’s where HealthCentral comes in: Read on to learn about 10 inspiring Instagram accounts that you should follow right now.

1. lillythelegend

Lilly Polivoda is an all-around UC warrior badass. She's the cofounder of Lipstick and Legends, a YouTube channel that recognizes the women's movement. Lilly trains as a weightlifter and shares how her body has changed based on her UC status, from pre-diagnosis, to being on prednisone, to having an ostomy. While her Instagram account isn't 100 percent devoted to UC awareness, she's always open and honest when her UC is acting up and how she deals with it.

2. doublebagginit

Double Baggin' It is a duo account featuring Danielle, who has UC, and Joe, who has Crohn's disease. They both have ostomies, too (thus the username). Danielle and Joe interject tons of humor into their Instagram posts, with a slight dose of reality. They produce regular videos, too, so you feel like you really get to know them. This past Halloween, the dynamic duo even dressed up their ostomy bags. If you look for humor in your diagnosis, or you’re trying to find some, this pair will keep you in stitches but help educate you at the same time.

3. chronicallysarauc

Sara is the woman behind chronicallysarauc. She's a Crohn's and UC cannabinoid advocate and uses her Instagram account to discuss her position on cannabis use for the treatment of UC, her advocacy in the U.S. government to help pass laws and regulations, plus her own struggles with UC. Sara provides great educational information about different treatment methods for UC and Crohn's and interjects a lot of positive messages and memes, too.

View this post on Instagram

I have my appointment with my Gastroenterologist on Monday, with a colonoscopy the following Thursday. In 2015, I was admitted after my second colonoscopy because of my severe damaged colon from ulcerative colitis. My GI at the time told me I was at 9.5 out of 10 for him to take it out. Remicade reversed the damage in 12 hours and no colectomy happened. Four rounds of remicade later, I get the flu shot and become paralyzed from Guillan Barre Syndrome and still suffer from severe nerve damage from this. Let’s fast forward to 2018. I’ve failed every biologic- currently on Simponi. It doesn’t hold my symptoms much but keeps me vertical. I’ve had to double my amount of every biologic which is indicative to how my IBD is aggressive and doesn’t respond to treatment....besides prednisone. I’ve been on #prednisone for almost four years straight, I can’t get off of it. I’ve been trying to get off 2.5mg since August of this year. It’s now November. Steroid dependency is no joke. My blood loss is very extreme, and well, I think the time has come. I can’t do this pain much longer, and now I have an enlarged spleen. I am chosing to go the permanent ostomy route, with complete removal of rectal stump, instead of the j-pouch my doctor keeps pushing. I see the same symptoms and complications occurring with a jpouch that I have now. My gut is telling me to go the permanent ostomy route. Anytime I’ve been faced with a lifechanging decision with this disease I have made the right choice. Here’s to getting some of my life back and eliminate this nasty large intestine that tries to kill on the daily. 💜 #ulcerativecolitis #crohnsdisease #crohns #inflammatoryboweldisease #ostomy #ileostomy #ileostomybag #ostomate #ostomylife #ostomyawareness #ulcerativecolitisfighter #fuckcrohns #steroiddependent

A post shared by Sara UC Warrior (@chronicallysarauc) on

4. NotoriousIBD

Kelly Jenkins is the woman behind NotoriousIBD. She's a certified yoga teacher and all-around adventurer. While she shares her struggles with UC, she also shows off her adventures in nature, whether biking, doing yoga, or taking helicopter trips. Kelly shares daily Instagram Stories that document everything from what she's eating to her activities for the day. She's incredibly positive throughout her journey and her struggles.

View this post on Instagram

"Who ever said that diamonds are a girl's best friend, never owned a dog." . . Feeling so much gratitude for this little fur kid of mine. The past few months have been physically frustrating for me. I began having hip tightness and low back pain in May... progressively it’s gotten worse and I’m experiencing a pelvic imbalance with the right side of my pelvis slipping back and getting locked out of alignment with my sacrum. I’ve had manual manipulations, massages, acupuncture and dry needling sessions and finally am seeing a new PT that focuses on Muscular Energy Technique (aka teaching your own body to put you back into alignment). I’m finally seeing results that stay after working on exercises and not doing any activity (so hard!!) Although I can’t walk him like I normally would or take him on mountain adventures, he is lovingly by my side with snuggles, kisses and puppy dog eyes. He is the definition of unconditional love and when I am all healed up this mama is going to hike all of the mountains with my fur baby!! . . . Also, side note and advice... No matter how bad your back hurts don’t take ibuprofen!!! I was desperate and took it for about a week and saw blood in my stool this weekend! I’m loading on Rowasa, CBD and a low residue diet and thankfully the blood is gone (hopefully for good) 🤞🏼. Ahhhh bodies why are they so complicated!?!

A post shared by Notorious IBD (@notoriousibd) on

5. stellaellastoma

Ella shares her adventures with her stoma, which she fondly named Stella. Ella has had a sub-total colectomy and has been rocking life with her stoma since 2018. Through her Instagram, Ella shows the realness of her journey with her stoma, including the massive amounts of medications, ostomy supplies, hair loss, and hospital visits. She's a great influencer to follow if you're just starting to adjust to life with a stoma.

View this post on Instagram

Sometimes when I talk about my ostomy to other people, I compare it to a heart or kidney transplant. My ostomy bag replaced my diseased organ and I wouldn't be alive without it. • This is my final project for the digital photography course I took this summer. Even though I missed 6 classes and had 1 surgery, some how I finished it! I was a little hesitant follow through with this idea but then I thought why not show people (who had no idea I had one) what an ostomy is. It doesn't make someone disgusting, ugly, or unsanitary. It's given me the gift of a life that I'm actually able to live, and to me that makes it kind of beautiful. • Do I wish I didn't have an ostomy? Yes. But do I wish I was back in the hospital unable to walk, eat, or even just make enough blood cells? Definitely not. • #inflammatoryboweldisease #ibd #ibdawareness #ibdwarrior #crohnsandcolitis #crohnsandcolitisawareness #ulcerativecolitis #uc #ulcerativecolitisfighter #ulcerativecolitisawareness #crohnsdisease #crohns #crohnsawareness #ostomy #ileostomy #ostomyawareness #stoma #ostomate #ostomybag #autoimmunedisease #chronicillness #nocolonstillrollin

A post shared by Ella + Stella (@stellaellastoma) on

6. ucqueen2366

Grace works as a children's nurse and manages both a personal Instagram account and her UC Queen account, where she focuses on advocating for invisible illness and shares her personal story with UC. Grace shares content about heruse of prednisone, her good days with people who “get it,” and her bad days when she's in the hospital for scopes or other treatment related to her UC. You can also see her sharing about her infusions.

View this post on Instagram

The scope life 🤒

A post shared by UC Queen 👑 (@ucqueen2366) on

7. uc_warriorprincess

UC “warrior princess” Mara shares what it’s like to live with her ileostomy, which she received in September 2018. Mara bares all with her UC story — everything from bag pictures to her days in the hospital, all without the use of filters or posed photos. Her posts are raw, real, and honest. She's a great influencer to follow, especially if you're a caregiver and new to the struggles that UC can bring.

9. emma_uc_warrior

Emma is a mom with UC and a UC warrior of 25 years. She started her Instagram account to document her proctocolectomy and life after that experience. She shares updates of "today's improvements" and usually does so with an uplifting smile. She also documents her bag and stoma changes to help educate others. Her kiddos and dog are terribly cute, and she shows a unique perspective on the UC experience as a full-time mom.

10. anxiousfornothing467

Ellie is a self-proclaimed coffee lover who is fighting UC. She shares her love of running and fitness through her Instagram account, along with photos and captions that show hospital experiences and what it’s like to be a mom with UC. Ellie is a Christian and shares her religious beliefs on her Instagram account as well. If you're a parent or new mom with IBD, Ellie is a great influencer to follow.

Becoming more comfortable and accepting of your UC diagnosis can be difficult, but seeing some of these influencers on your Instagram feed can help you feel inspired in your life with UC. Each one of these UC influencers is eager to connect with you — why not give them a follow?

See more helpful articles:

How to Shift From Surviving to Thriving With Ulcerative Colitis

How to Talk to Your Friends About Your Ulcerative Colitis

Sick and Tired: How to Deal With Fatigue When You Have Ulcerative Colitis