“All of a sudden I knew what it was like to be very unwell very quickly,” she says. “It was like my whole world came shattering down. Suddenly I was questioning my ability to work and to go to school, my ability to be in a relationship or go out with friends, and all these so-called ’normal’ things that people do in your twenties.” After the initial shock of the diagnosis, Aswani Omprakash faced a long road ahead to manage her condition. Doctors initially misdiagnosed her with ulcerative colitis (UC), and she underwent a slew of exhausting treatments and surgeries meant for patients with that condition. Eventually, she learned she had Crohn’s, the same disease her father had, which in his case had ultimately led to colorectal cancer and claimed his life when he was 39. Her previous surgeries had to be reversed, corrected, or redone. The trauma that came with a couple dozen of these procedures took a major toll on her mental health. “Like you’re in the hospital and they can’t find a vein in your arm so they try looking in your foot, and you’re cringing and saying ‘No, no, no, please don’t do that,’” she recalled. “Or you have to drink contrast to undergo another test and end up throwing it up seven times and it’s all for naught. There’s all this trauma that’s ingrained in you with all these surgeries.”
Prevalence of Mental Health Issues in People With IBD
Aswani Omprakash’s story is not uncommon. Research suggests mental health is a serious issue for people with IBD. According to the Crohn’s & Colitis Foundation, the rate of depression and anxiety among individuals living with Crohn’s or UC is two to three times higher than among the general population. “There’s so much shame and stigma around digestive diseases still,” says Stephanie Brenner, a licensed clinical social worker who works with clients with chronic illnesses, including IBD. “It can be isolating because a lot of people just don’t want to talk about it, and there’s a lot of anxiety around surgeries,” Brenner says, adding that people may be worried about scars from IBD surgery, or the need for an ostomy bag, and how these things will affect their relationships. Brenner herself was diagnosed with Crohn’s disease in 2000; she eventually had to undergo surgery to remove an inflamed colon and now has a permanent ostomy. “It did create a lot of anxiety because I thought, what if they find a cure and I don’t qualify because I can’t go back?” she says. “Once everything’s removed, it’s done. I will never be able to be reconnected.” While this surgery can be lifesaving, many patients struggle with self-esteem, body image, and relationship concerns after the procedure. According to research published in the World Journal of Gastroenterology, females are at a higher risk of mental health issues like depression and anxiety following IBD surgery. Today, Brenner says she’s grateful for her surgery because it has improved her quality of life and she no longer needs to take medication to manage her disease. “I’m four years out [from the surgery] and I feel amazing,” Brenner says.
Cultural Shame Around IBD Surgery
For Aswani Omprakash, cultural stigma against IBD added another layer to the difficulties of living with her condition. “I’m of South Asian descent, and talking about any kind of illness at a young age is a flaw,” she says. “It puts shame on your family.” Being a young woman, she also received pressure about what her condition meant in terms of starting a family. “I was being told if I had these surgeries, I wasn’t going to be fit to be married or have kids or run a house,” she says. “So people who have disabilities are supposed to just not get married? We’re not deserving of love? All of that was hitting me really hard in my early twenties.” Aswani Omprakash also received pushback on being treated with Western medicine. “In our culture, alternative medicine is a mainstay,” Aswani Omprakash says. “We will try anything before we try massive doses of biologics or a surgery as intense as what is required to treat aggressive IBD. So it wasn’t just the stigma of having this disease, it was having family members tell me ‘I can cure this with your diet or alternative medicines.’” Despite this pressure from her family, Aswani Omprakash underwent surgery in 2008 to remove her colon. She had a temporary stoma, which was then reversed several months later by a procedure that created a J-shaped pouch from her small intestine that would allow her to use the bathroom as she did before surgery. She soon developed pouchitis (inflammation of the J-pouch) and suffered a number of extremely painful complications as a result. She needed several corrective surgeries and eventually the J-pouch was removed. This time, she received a permanent ostomy followed by several corrective surgeries to close a chronic rectal wound. Aswani Omprakash said the cultural stigma around IBD delayed many of her treatment decisions. She now serves as a patient-advocate to help others in the same position. “I hear from so many others of Asian backgrounds, Middle Eastern backgrounds, people in the Latinx community, who are all going through similar experiences around cultural stigma,” she says. She regularly speaks at IBD events and conferences and created a support group with three other South Asian women called IBDesis, which is dedicated to empowering people of South Asian descent with IBD around the globe. The group is now creating a nonprofit organization called the South Asian IBD Alliance, in which patients and clinicians will work together to improve patient care in this community.
4 Ways to Cope With Mental Health Issues While Living With IBD
While living with IBD can be physically and mentally exhausting, there are steps you can take to look after your mental health.
1. Talk to a Professional
If you’re struggling with feelings and symptoms of depression or anxiety, reach out for help from a mental health professional. This is especially important if you’re considering IBD surgery, Brenner advises. “It’s really important for patients to have access to a mental health provider as they move towards that decision,” she says. “Because anxiety and depression are so common, they can cloud the decision-making process when it comes to surgery. So I think it’s so helpful to have that sounding board outside of your GI team who gives you a full hour versus a 15-minute appointment.” There is also increased awareness in the research and clinical community that some patients with IBD can develop PTSD from their disease and treatment process and other various factors. This can go along with depression and anxiety symptoms, and something that can be explored with a mental health professional who is trauma-informed. To connect with a mental health professional who specializes in IBD, the Rome Foundation, a support organization for people with functional GI disorders, offers a directory of GI psychologists. You can also ask your gastroenterologist for a referral.
2. Build a Strong Support System
Having loved ones you can lean on during tough times is a crucial part of IBD management. For Brenner, creating that strong support system took time, but building a safety net of different people who provide different types of support has tremendously improved her mental health. “Some are really good at practical things,” she says. “Some are super funny. Others are empaths. Some have IBD. So, I feel like I’ve been really intentional about creating this web of people and knowing that if they’re going through their own stuff and are unavailable, there’s enough people in this web of support that I can lean on someone else.”
3. Connect With Others With IBD
Whether you join a local support group in your community or connect with others online through the Crohn’s & Colitis Foundation, talking to others who also live with IBD can help you feel less alone. “Living with IBD can be really isolating because there’s so much stigma, and people don’t want to talk about it,” Brenner says. “We need to be connecting with each other. There’s just something so powerful about someone who says ‘Me too.’”
4. Try Stress-Reduction Techniques
Whether it’s practicing yoga or listening to your favorite calming music, take time for yourself each day to concentrate on your mental health. “I make sure I exercise and get out for walks,” Aswani Omprakash says. “I meditate and take time to ground myself with a few deep breaths and tell myself it’s going to be okay. I think it’s very important to give yourself that positive self-talk, to encourage yourself to keep moving forward with all the challenges that we might be faced with.”
