Tina Aswani-Omprakash and Kimberly Hooks both live with severe inflammatory bowel disease and have undergone major surgery, but in different ways. One had a J‑pouch after a temporary ostomy, the other got a permanent ostomy after a failed J‑pouch. Read more to learn how they’ve changed their daily routines to accommodate these diagnoses.
Two Paths to Diagnosis
Aswani-Omprakash, CEO and co-founder of the Strategic Alliance for Intercultural Advocacy in GI (SAIA), had been experiencing unpleasant gastric symptoms for years. But when she looked for help, she was brushed off. Her primary care provider said that South Asian people don’t get inflammatory bowel disease (ulcerative colitis [UC] or Crohn’s disease). But Aswani-Omprakash knew better.
“My father died when I was 8 years old from Crohn’s that turned into colorectal cancer,” she says. “He was 39.”
She pushed for a colonoscopy, which she finally had in January 2006. But she only learned in June, while hospitalized for bloody stools and weight loss, that the colonoscopy showed she had UC.
Hooks’ route to diagnosis wasn’t all that different. She has lived with abdominal symptoms since she was a teen. Whenever she saw a doctor, she was often told to come back if she still had the symptoms, or the doctor would recommend taking Milk of Magnesia.
“I just thought maybe I’m sensitive to different foods, or something like that,” Hooks says.
Hooks was 28 when she was finally diagnosed with UC in 2011. She was told it was just a mild case of UC. In 2018, she had her first hospital stay, and the UC was reclassified as severe.
When Surgery Becomes the Recommended Option
There’s no medication that can cure UC. But some drugs can control symptoms for many people, even if it takes some trial and error to find the right one. But when UC is severe and the medications don’t work or the person can’t tolerate them, surgery to remove the colon and rectum is the next step.
Hooks did try medications, but she says her colon finally gave up and she had emergency surgery — a total colectomy and ostomy — in May 2020.
“I really don’t think anyone can prepare you 100% for having an ostomy, in terms of actually living with it, managing it, changing the appliance, and all the things you need,” Hooks says.
She also had the added disadvantage of the surgery happening during the COVID-19 pandemic. Unable to meet with others, she had to navigate this new reality alone in her home.
“The world was shut down, so I didn’t really travel or go out with it,” she says. What she did learn though was that the ostomy stopped the pain and urgency that had ruled her life for years. “I always say my ostomy saved my life,” she says. “And it took away that constant fear of not making it to the bathroom.”
But J-pouches do come with their own complications. “A J-pouch is a good alternative for some people, but they think this surgery is a cure and life will be butterflies and rainbows,” Hooks says. “I thought that too.”
But after four and a half years of being symptom-free, she developed pouchitis (inflammation of the pouch) and a stricture. She’s now back on biologic medication and has frequent check-ins with her medical team.
A path to a permanent ostomy bag
Aswani-Omprakash’s path to surgery was long and culturally complex. Her family didn’t trust biologics and strongly discouraged Aswani-Omprakash from even thinking about taking them, but her symptoms were getting worse. Her doctors concluded that she had pancolitis, a severe type of UC that involves the whole colon and rectum. Aswani-Omprakash went against her family’s wishes and tried a biologic. Unfortunately, it only worked for about a week before it stopped helping.
When her doctors recommended that she have an ostomy (which would be changed to a J-pouch later), her family was adamant: no ostomy, and no major surgery.
“They told me, ‘No one will marry you with an ostomy bag. Your life will be ruined.’” In her community, an ostomy was framed as shameful. “I was literally 85 pounds, and I said I wasn’t going to die with this condition,” she says.
Her boyfriend (now husband) drove her to the hospital, where she had an emergency colectomy and ostomy the next morning, on July 4, 2008. She calls it her Independence Day.
In February 2009, Aswani-Omprakash’s ostomy was reversed, and her surgeon created a J-pouch. But after a few years, her diagnosis was changed to Crohn’s. Following many complications with the J-pouch, she had it removed and replaced with a permanent ostomy. This was the turning point in her life.
“Instead of having pain and bloody stools and running to the bathroom multiple times a day, the ostomy gives me freedom to work and travel. I can have an intimate life. When I was so sick, I couldn’t do any of this,” she says. “The ostomy got me to a point where I felt like I was a human being again.”
What Their Days Look Like Now: Mornings
Both women learned by trial and error what routines worked best for them with their ostomies.
Morning stoma care
Aswani-Omprakash has to empty her bag six to eight times a day, but that’s a lot better than having to run to the bathroom, afraid that you’ll have an accident, she says. “You just unravel the bag and let it empty into the toilet bowl, clean off the edges, and roll it back up.”
Every three or four days, she delays her breakfast and does her stoma care around 9 or 10 a.m. This is when the stoma is least active. Over the years, she’s gotten the routine down to 10 or 15 minutes: she takes off the bag, cleans the skin around the stoma, applies the barrier, and reattaches the bag.
“Sometimes, the skin can get irritated, especially if you wear the bag too long. You'll figure out the rhythm of how many days you can get,” she says. “In the summers, I get three days, because I’m sweating so much, especially if I'm physically active or swimming. But in the winter, I can get four.”
Aswani-Omprakash calls knowing when to change her bag the “itch threshold.” If she wears the bag too long, her skin starts to itch or she might see some bleeding on the sides.
Choosing an outfit
There are many options for stylish and comfortable clothing for people who have ostomies, and the bag is typically unnoticeable unless it’s full. High- or low-waisted underwear will be more comfortable than the ones where the waistline touches your bag. Opt for loose clothing from any store or designer, or you can shop from ostomy-specific lines. High-waisted pants allow your bag to rest under the waistline. They can support the bag, too.
If you’re going swimming, a woman’s two-piece suit usually doesn’t interfere with the bag. Aswani-Omprakash says that there are opaque bags, which make them less obvious. Some companies say they are developing different skin-toned bags as well due to growing demand. If you’d prefer the bag not be visible, a one-piece will do the trick.
Know where the bathroom is
Hooks’ ostomy was always supposed to be temporary until she got the J-pouch. When you have a J-pouch, your stool is looser, so it moves more. This shapes her mornings. On a typical day, Hooks wakes up and goes straight to the bathroom, often more than once with back-to-back trips. Emptying the pouch can take many visits. She gets her daughter ready for school and prepares for work, all the while knowing she may need to use the bathroom again.
“When I go to work, the grocery store, or do anything outside of the house, I am very mindful of where the restrooms are,” she says.
Going Out
Planning outings can be a challenge.
“We can have a family day and plan to leave at noon — and then when it’s time to go, I may have to go to the bathroom a few times, so families need to be patient, understanding that this is something we are trying to navigate,” Hooks says.
Aswani-Omprakash feels lucky that she doesn’t have to worry about this part anymore. All she has to do is “empty and go.”
Working, commuting, and staying prepared
Hooks keeps emergency kits at work and in her car. “I have hand sanitizer, big cleaning wipes, and a change of underclothes,” she says. Enlisting the help of friends and coworkers is essential. Aswani-Omprakash has a similar kit with extra ostomy supplies in her purse, just in case.
Work environments aren’t always adjustable, but you have the right to reasonable accommodations by law. Access to a workstation near a bathroom and taking frequent breaks, for example, are reasonable requests.
The following tips can help you stay prepared at work with an ostomy or J-pouch:
- Empty your pouch or ostomy bag before meetings can help reduce the risk of needing to leave, even if the meetings go longer than planned.
- Keep an emergency kit with wipes and spare equipment with you.
- Have at least one trusted coworker who knows where your kit is to make leaks or urgent trips less stressful if you need help.
“You don’t have to tell everyone your business, but it can give you a sense of comfort if you can reach out to someone to ask for support or to bring your emergency kit to you if you have an accident,” Hooks says.
Food and Social Life
One complaint that both women shared was the lack of direction when it came to their diet.
“I’m a vegetarian, so it was tricky to figure out my diet. A lot of the dietitians didn’t know what to do with me,” Aswani-Omprakash says. She had to find the balance of getting enough protein and not having too much fiber so her bowels weren’t constantly running.
Hooks asked her gastroenterologist (GI doctor) if they could connect her to a dietitian. She eventually saw one but only received a generic PDF she felt she could have found online herself. “I’m a pescatarian, and the list had chicken and all of the things I don’t eat,” she says. “We’re not a one-size-fits-all group.”
Planning your meals
Both women learned what worked for them and what didn’t. And aside from the actual food, how you prepare and eat it is important, too. For example, raw vegetables and legumes are hard to digest, so the trick is to thoroughly cook them, or even puree them. Aswani-Omprakash soaks legumes overnight or cooks them in a pressure cooker. Chewing your food thoroughly is vital to help avoid blockages when you have an ostomy or a J-pouch. “You want to be mindful that you’re chewing,” Hooks says.
On busy workdays, both women stick to “safe” meals they know sit well, such as well‑cooked vegetables paired with potatoes or rice and a protein source, and save more adventurous foods for times when they’ll be home near their own bathrooms. Hooks learned that eating a heavier lunch and a smaller, earlier dinner helps reduce nighttime bathroom trips and leads to better sleep.
Small, frequent meals and snacks work best for Aswani-Omprakash. “I do smoothies with fruits and veggies plus protein powder for breakfast. The smaller the particle size, the easier to digest and get your nutrition.”
Eating out can be a challenge, so be open and honest about what you can eat when you’re visiting others. Sometimes, bringing your own food is helpful. If you’re dining in a restaurant, look up the menu online before you go to know what you might be able to order.
Dealing With Unexpected Leaks
One thing many people worry about with an ostomy or J-pouch is leaking stool — and that can happen. When it comes to ostomies, the important thing is to have the right bag and sealant that works for you. Not every system works for everyone.
“I might have leaks two to five times a year,” Aswani-Omprakash says. “People think that leaks happen all the time, but once you figure out a pouching system that works for you, you really shouldn’t be having many leaks.”
When she does have a leak, it usually happens at night or times when she hasn’t sealed her bag properly.
J‑pouch leaks feel different because the pouch is attached to the anus. But they can still disrupt your work and social life.
Evening Routines and Sleep
Evenings are when planning really pays off. Hooks has learned to make mornings a little smoother by preparing as much as possible the night before, such as packing her daughter’s backpack and lunch and setting out clothes, so a string of bathroom trips doesn’t completely derail the day. Using the bathroom right before bed will hopefully help you avoid any nighttime wake-ups.
Intimacy is something many people with an ostomy bag or J-pouch worry about. It’s likely one of the last things their doctor brings up, if they do at all.
One of the arguments Aswani-Omprakash’s family had against her having an ostomy was that a man wouldn’t want her and that she wouldn’t get married if she had one. But she is happily married to the boyfriend who brought her to the hospital for that initial surgery.
“It’s very important to have these conversations with your partner,” Aswani-Omprakash says. “You can get opaque bags and wear nice lingerie. They have lingerie that covers your ostomy bag, or you can wear a wrap. So, if you don’t feel comfortable showing the ostomy bag, it can be covered.”
Emptying your bag before being intimate, finding comfortable positions, and clearly communicating with your partner is key.
Final Thoughts
Surgery didn’t erase ulcerative colitis or Crohn’s from Aswani-Omprakash's and Hooks' lives.
Both women still have to negotiate many things, from planning bathroom breaks and finding the closest bathrooms whenever they go out to watching their diets. But when they weigh these things against the pain and fear of dying that they had experienced before their surgery, they both say the same thing: It was worth it.
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