TippiTV Crohn’s Disease: 2021 Reunion
We check in with our TippiTV participants to get an update on how they’ve been managing their condition — and get the scoop on everything from nutrition and yoga to the impact of COVID-19.
TippiTV Crohn's Reunion
T ippiTV Crohn’s Disease brought together a team of experts to share tips and advice to help three people living with Crohn’s disease. Now we’ve reunited participants Harmon Clarke, Myra Gorman, and Tina Shakiyah Powell with expert tip giver Tina Aswani Omprakash, founder of Own Your Crohn’s, for a candid discussion hosted by patient advocate Natalie Hayden, founder of Lights Camera Crohn’s.
If you’re living with Crohn’s disease, it can make a world of difference knowing that you have a community of people who understand what you’re experiencing and can act as a sounding board and source of helpful tips and emotional support — and that’s what the TippiTV participants have been for each other.
“Being able to tell my story is important,” says Tina Shakiyah. “But it’s also important that I’m inspired by other people going through the same thing, and that’s what I feel like I got here today.”
The reunion gave Harmon, Myra, and Tina Shakiyah a chance to catch up with each other and update us on how they’re doing, talk about how the pandemic has affected their lives, and share tips, experiences, and advice from the past year to support one another and empower the Crohn’s community at large.
“I think it’s very important that we keep coming together in community and allowing patients to realize that none of us are alone, that we’re all in this together and that even though our journeys might be unique, we still have the bond of IBD,” Tina says.
The Power of Mind-Body Methods and Self-Care in Managing Crohn’s
People with inflammatory bowel disease (IBD) such as Crohn’s disease may have higher rates of stress, anxiety, and depression, according to the Crohn’s and Colitis Foundation (CCF). Mind-body therapies such as yoga, tai chi, and Pilates may be helpful in reducing stress; encouraging a sense of control, well-being, and happiness; and improving overall health.
Our seasoned TippiTV participants know just how important healthy lifestyle habits can be for their physical and mental health.
For instance, Harmon, a dedicated yogi who plans to open a wellness retreat in California, recently started getting into kundalini yoga, which, he explains, involves more breath work. “When I feel pain, I start to breathe a little more rapidly. When I’m in a relaxed state, I breathe slower,” he says. “Yoga is like my cornerstone — I try to start my day off with that.”
While complementary approaches such as yoga and Pilates won’t cure Crohn’s, they may help you manage its symptoms and feel better overall — especially if you practice under the care of a professional. “I go for pelvic floor physical therapy, and my therapist has shown me a number of stretches that really help with the breathing and the pain,” says Tina. “Having a professional watching over me and guiding me with these exercises to make sure I’m doing them safely has changed my life.”
Impact of COVID-19: How Those With Crohn’s Are Coping
While the effects of the pandemic on our collective mental health and well-being will probably not be fully understood until after it’s over, early research — and common sense — points to COVID-19 increasing stress and therefore potentially exacerbating conditions such as Crohn’s. According to a study of 243 Crohn’s patients published in January 2021 in the European Journal of Gastroenterology and Hepatology, the symptoms of Crohn's disease worsened during the COVID-19 pandemic and the primary reason reported by the study participants was an increase in stress.
The CCF noted that while a certain amount of stress and anxiety is typical if you’re living with IBD, the pandemic has added an additional layer of challenges — which was certainly true for our TippiTV participants.
Due to shutdowns in the entertainment industry, Atlanta-based writer and producer Tina Shakiyah lost out on work — and, as a result, lost her health insurance. “I didn’t know what to do,” she says. “I just prayed that I didn’t get sick or need to go to the doctor.”
Myra actually saw her work as a farmer’s market manager pick up this year. In addition to opening up her own market during the pandemic, she was tasked with managing two other markets in the Chicago area as well. “It ended up fabulous,” says Myra. “The only problem for me was it was very stressful. It made me make sure I was trying to stay as healthy as possible.”
If there’s a silver lining to the pandemic, it may be that family and friends have become more aware of what it means to be immunocompromised, says Natalie. “They might have known you have Crohn’s, but they might not have known about the intricacies of how it impacts your life, health, and overall well-being,” she says. According to Tina Shakiyah, this was definitely her experience. “It made me feel good to know that I had a support system outside of my mother and my siblings,” she says. “I recently gave one of my longtime best friends all the scoop about what I go through, and he said, ‘I knew you had Crohn’s, but I didn’t know it was like this.’ So now our friendship is beyond what it started as because he understands.”
What to Do If You Don't Have Health Insurance
It’s important to stay on top of your medical care and treatment if you have Crohn’s disease. But if you’ve lost your health insurance, you may be wondering how you can cover your expenses. These resources can help.
Community health centers provide care regardless of your ability to pay and charge for services on a sliding fee scale.
This interactive calculator helps you determine if you qualify for assistance with your healthcare costs.
Here you can look for an affordable health plan through the Marketplace or see if you qualify for low-cost coverage through Medicaid or the Children’s Health Insurance Program.
This tool matches you with resources and cost-sharing programs to help lower your out-of-pocket costs, whether or not you have insurance.
Many companies and organizations offer programs to help you pay for medications and services. This tool from the Crohn’s and Colitis Foundation lets you explore your options.
Which of the following have affected your ability to manage your Crohn's disease in the past 12 months?
Treatment Successes, Challenges, and Surgery
Depending on the type and severity of your Crohn’s disease and your own individual health history and condition, your treatment plan may include lifestyle changes, medication, and surgery. Like the Crohn’s community at large, our TippiTV participants have a wide range of experiences with Crohn’s treatment. Natalie has been on the same biologic medication since 2008, whereas Tina and Myra say they’ve had to try a number of medications over the years.
Myra has tried more than 20 medications since her diagnosis in 1998. She now reports that she’s on another biologic and experiencing “small, light flare-ups.”
While stating that she isn’t giving medical advice, Tina notes that Myra may want to consider talking to her doctor about her treatment options, including combination therapies or even clinical trials. “There are ways to not only optimize treatment but to find ways to bring you back into a better state where you can have greater quality of life,” she says. If you’re interested in clinical trials, the CCF has resources for finding ones you may eligible for.
Harmon and Tina originally connected over the fact that they both have an ostomy — a surgically created opening in the abdomen through which waste is emptied. This procedure can help alleviate debilitating pain and reduce hospitalizations, and according to the CCF, it’s fairly common: As many as 1 in 500 people live with an ostomy.
“I’ve had over 20 surgeries,” says Tina. “I’m not going to say it’s a perfect solution — I do have a lot of adhesion and kinks in my bowel — but the ostomy really gave me my life back.” And she notes that, even with an ostomy, she’s still able to wear the clothes she wants to wear. “An ostomy is a game-changer for those of us who absolutely need it,” she says.
Harmon also lauded ostomy as a “wonderful option” that he says has given him a new lease on life. He also expressed gratitude about connecting with Tina to discuss this surgery. “I’ve only met one other person who’s had an ostomy bag, so to hear that someone has been healthy, successful, using this surgery was like, Wow, maybe this can actually help me,” he says.
Food as a Frenemy: Harnessing the Power of Nutrition When You Have Crohn’s
While there’s no one diet that has been shown to be beneficial for all people with Crohn’s, what you eat can play a significant role in how you feel and function.
But navigating your relationship with food isn’t always easy. Just ask Myra, who still describes food as her nemesis. “I’ve kind of ignored food the most in the past couple months,” she says. “I’ll go the whole day and then realize at dinner that I haven’t eaten.” One thing she is excited about? Her newfound passion for using an air fryer to make tasty treats she can eat, since fried foods have long been a no-no in her diet.
Harmon says this past year was the first year he gained traction with his diet. When the pandemic hit, he decided to go on exclusive enteral nutrition (EEN), which is a specialized, completely liquid diet. After four months, he resumed solid foods and credits chef Miro Uskokovic from TippiTV with encouraging him to try new things, including this flavorful chicken soup recipe. For years, Harmon ate the same thing every day but now says it’s exciting — though sometimes challenging — to branch out. “I started to see the beauty in textures,” he says. “I’m learning how to find new foods that benefit me holistically.”
Tina Shakiyah says that she, too, is becoming more conscious about what she puts in her body. “It’s learning the dos and don’ts, and what I’m willing to sacrifice,” she says.
Navigating Culture, Relationships, and Crohn’s Stigmas
Managing your physical symptoms is only one aspect of living with Crohn’s disease. Dating, marriage, your relationship with your family, friends, and the people in your social and cultural group — these facets of life can all be impacted when you have a chronic condition such as Crohn’s.
And unfortunately, negative perceptions and misconceptions about IBD can also be part and parcel of living with Crohn’s disease. A review published in March 2016 in the journal?Clinical and Experimental Gastroenterology found that people who live with IBD may experience stigmatization.
Tina, who is South Asian American, noted that in her culture, people with diseases are often “othered” and discriminated against. She also notes, “I’ve been told over and over that my husband is an angel for marrying me because in my culture, you don’t get married with conditions like this.” To help fight this stigma, she recently cofounded IBDesis, a global platform dedicated to educating and empowering South Asians living with IBD.
Harmon, who is African American, added that he’s hidden his disease his entire life due to bias in his culture, in which, he says, “pain and sickness is seen as weakness.”
Navigating romantic relationships is another area that can be tricky if you’re living with Crohn’s. Harmon admits he used to think, Anyone who wants to be with me, I don’t want to be with them. This is a sentiment Tina Shakiyah echoed. “I dealt with that a lot, too, especially early on,” she says. “I planted it in my head that nobody is going to want to date or marry somebody with this condition, and that blocked a lot of people in my life.” But, she says, seeing people like Myra, mother to two adult children, and Natalie, who’s pregnant with her third child, made her realize “you can have this family and someone who’s going to love you, regardless of what you have going on.”