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 COVID-19 has had on their lives.
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 — Harmon Clarke, Myra Gorman, and Tina Shakiyah Powell. Now we’ve reunited the participants with expert tipper Tina, 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. They 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. “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 a chance to catch up with each other and update us on how they’re doing, talk about how the pandemic affected their lives in 2020, and share tips, experiences, and advice 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, may have higher rates of stress, anxiety, and depression, according to the Crohn’s & Colitis Foundation. Mind-body therapies such as yoga, tai chi, and Pilates may be helpful in reducing stress; improving overall health; and encouraging a sense of control, well-being, and happiness.
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, 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 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 People With Crohn’s Coped
Experts will probably be studying the effects of the pandemic on our collective mental health and well-being for years to come, but early research — and common sense — points to COVID-19 increasing stress, which could exacerbate conditions such as Crohn’s. According to a study published in January 2021 in the European Journal of Gastroenterology and Hepatology, the study participants’ Crohn's disease symptoms worsened during the COVID-19 pandemic, and the primary reason they reported was an increase in stress. Other research, published in April 2022, found that the stress from being isolated from friends and family during lockdown exacerbated gastrointestinal symptoms in people with IBD.
The Crohn’s & Colitis Foundation noted that while a certain amount of stress and anxiety is typical if you’re living with IBD, the pandemic 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 lost out on work and lost her health insurance as a result. “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. “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.
Tina says 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 Center Locator
Community health centers provide care regardless of your ability to pay and charge for services on a sliding scale.
Health Insurance Marketplace Calculator
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.
Get matched with resources and cost-sharing programs to help lower your out-of-pocket costs, whether or not you have insurance.
Patient Financial Assistance Programs
Many companies and organizations offer programs to help you pay for medications and services. This tool from the Crohn’s & 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 individual health history and condition, your treatment plan may include lifestyle changes, medication, or surgery.
Like the Crohn’s community at large, our TippiTV participants have had a wide range of experiences with 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.”
Tina (though stating she isn’t giving medical advice) suggested that Myra 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 Crohn’s & Colitis Foundation has resources for finding ones you may be 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 Crohn’s & Colitis Foundation, it’s fairly common: As many as 1 in 500 Americans 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.” She’s also able to wear the clothes she wants to, even with an ostomy, she notes. “An ostomy is a game changer for those of us who absolutely need it,” she says.
Harmon also lauded his ostomy as a “wonderful option” that has given him a new lease on life. He 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 and 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
The best diet for people with Crohn’s will look different for everyone. Still, what you eat can play a significant role in how you feel and function.
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, because fried foods have long been a no-no in her diet.
Harmon says this past year was the first in which he gained traction with his diet. During the pandemic, 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 and says it’s exciting — though sometimes challenging — to branch out now. “I started to see the beauty in textures,” he says. “I’m learning how to find new foods that benefit me holistically.”
Tina says that she, too, is becoming more conscious of 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 the physical symptoms is only one aspect of Crohn’s. Living with a chronic condition can have an impact on all facets of life, including dating, marriage, and your relationship with your family, your friends, and the people in your social and cultural groups.
Unfortunately, negative perceptions and misconceptions about IBD can also be part and parcel of living with Crohn’s disease. A review published in December 2019 in the journal Internal and Emergency Medicine found that people living with IBD say they worry about being a burden to others and can find it difficult to be sexually intimate with people. As for work, the review found that people with IBD can have difficulty finding a job, getting a promotion, or taking time off for medical care.
Tina, who is South Asian American, noted that in her culture, people with diseases are often “othered” and discriminated against, noting, “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. “Pain and sickness is seen as weakness,” he says.
Navigating romantic relationships 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 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, the mother of 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.”