Almost 3 years ago Torrance resident Elizabeth McCarthy faced a life-changing event that many would find overwhelming. Diagnosed with severe ulcerative colitis, McCarthy’s health deteriorated rapidly.

"I was literally dwindling down to 100 pounds, malnourished, and too weak to even walk from my bedroom to the bathroom," she recalls. “I was in pain 24 hours a day. My husband and I were so scared.”

It was during a visit to the Torrance Memorial Medical Center emergency room that McCarthy’s journey towards living without chronic pain began.

“I told the doctor that if he could just take my pain away for an hour, that’s all I really could hope for,” she said.

The doctor did more than that. He connected McCarthy with a physician at Torrance Memorial affiliate Cedars-Sinai who specializes in inflammatory bowel disease (IBD). They recommended a life-saving surgery: the removal of McCarthy’s colon and rectum, resulting in a permanent ileostomy.

An ileostomy is a surgical procedure that alters the way the body expels waste. During the surgery, the small intestine is brought through an opening in the abdominal wall, creating a stoma where waste collects in an ostomy bag. This procedure can be temporary or permanent, depending on the underlying health condition.

For McCarthy, it was a permanent change. Initially, adjusting to life with an ostomy was daunting.

"At first, I wasn't happy about it. I didn't want to look at it or change it," she admits. However, a turning point came when she found herself teaching a nurse who was unfamiliar with ostomies how to change her bag. "That made it not as terrible. I was distracted by teaching her and did okay," she says.

Finding support became crucial for McCarthy. The 63-year-old discovered an online support group based in Fargo, North Dakota, and joined various social media groups. These online communities provided invaluable tips and emotional support that she couldn't find elsewhere. "There are tricks that nurses or doctors don’t really know. They don’t work for everybody, but I picked up some really useful tips," she explains.

Her experience highlights the importance of support groups for ostomy patients. “People are truly desperate and struggling. They don't want to leave the house due to leaks and frequent changes. I understand how desperate that feels," she shares. Through the support group, McCarthy found hope and the motivation to help others navigate their new reality.

In April 2024, Maki Jerden, a wound and ostomy care nurse practitioner at Torrance Memorial, partnered with McCarthy and another patient who has a colostomy to create the Torrance Memorial Ostomy Support Group, a space for individuals to share their experiences, learn, and find comfort in knowing they are not alone.

Torrance Memorial Medical Center staff with members of the Ostomy Support Group. The group meets every three months, at which time ostomy patients can share knowledge and support one another. 

"This support group is more like a safety net for those who are in need," Jerden explains. The group meets quarterly, providing a crucial resource for those with ostomies due to various conditions such as Crohn's disease, ulcerative colitis, cancer, and emergency surgeries.

Jerden emphasizes the significant life changes that come with an ostomy. "Patients stay in the hospital for only a few days post-surgery, during which they need to learn how to care for their ostomies during their acute recovery phase. This is incredibly challenging," she says. The support group aims to fill the gap.

For McCarthy, helping manage the group is not just a way to give back but also a means of staying informed and connected. "I will have this ostomy forever, so I want to know as much as possible. It’s definitely an adjustment, and we all have good days and bad, but I’m very grateful because I have my life back," she says.

Recently she traveled to Iceland and Denmark, which is a testament to the resilience and strength of ostomy patients.

McCarthy on a recent trip abroad.

The Torrance Memorial Ostomy Support Group meets next in October at the West Tower, Second Floor, Room B. McCarthy and Jerden encourage anyone with an ostomy or anyone caring for someone with an ostomy to join and find the support they need.

"We see hope for these people. At the last meeting, people were so grateful to have a safe space to learn, connect and share," McCarthy says.

For more information on the Torrance Memorial Ostomy Support Group, call Torrance Memorial Community Health Education at 310-517-4711 or send an email to Torrancememorialhealtheducation@tmmc.com.

Join us Oct. 17 at 3pm to find support, share experiences, and gain valuable insights into living with an ostomy.

Those who are interested in learning more about living with an ostomy should visit the website of the United Ostomy Association of America, Inc., https://www.ostomy.org/.