Volunteers give Crohn’s and colitis patients new lease of life

417

Friendship can be some of the best medicine, as discovered by many whose lives have been touched by the dedicated patient-volunteers of Mount Sinai Hospital’s Inflammatory Bowel Disease (IBD) Support Network, based in Toronto.

The peer-led, staff-supported group is widely known for empowering patients and their families through support-group meetings, events, online resources and a Buddy Program that transcends provincial borders.

For those suffering from a chronic IBD such as Crohn’s or Ulcerative Colitis, the thought of surgery may be more ominous than the illness itself. For 29-year-old volunteer Karoline Fiedler, surgery has been the first step to living and loving life. But confronting both illness and recovery require a listening ear and encouragement from those who have braved the same challenges.

“I am the only person in my family to have IBD,” says Fiedler. “When I was considering surgery, I was seeking reassurance from others about the post-surgery and day-to-day lifestyle adjustments my family couldn’t understand.”

Four years after a severe flare-up of colitis brought Fiedler to Mount Sinai on her 19th birthday, she underwent pelvic pouch surgery – a procedure that involves removing the diseased large intestine and constructing an internal ‘pouch’ from the small intestine. Before surgery, she turned to the Hospital’s IBD Support Network – a move that inspired her to become a full-fledged volunteer.

“Before I volunteered, I was set up with a few different IBD ‘Buddies’ who knew exactly what I was going through,” recalls Fiedler. “When I got home from my very first Support Network meeting, a voice message was already waiting from my Buddy.” Since then Fiedler has happily returned the favour, encouraging other patients by phone, email, or over a cup of coffee.

Friend and co-volunteer Nina Andrade can relate. She first approached the IBD Support Network one day after surgery. She was immediately motivated to give back as a volunteer and today, as a healthy mom, she is sharing her story of success with other patients including young women who have questions about pregnancy with IBD.

“I’m very committed to this group,” says Andrade. “I started volunteering because I wanted to help break the stigma of IBD and surgery. I wanted people to know that they could have the surgery and lead full, healthy lives.”

Andrade explains that many people are embarrassed to talk about IBD symptoms or surgery, and as a result, don’t always get the support they need to gain a positive new perspective on life. That’s where volunteers play a vital role. Their influence has been observed by staff, including Registered Nurse and Research Co-ordinator Brenda O’Connor.

“We have patient-volunteers who enjoy incredible, active careers while successfully managing their IBD,” says O’Connor, who has helped nurture the program since its infancy. “Patients really brighten when they connect with our volunteers through the IBD Buddy program or Support Network meetings. They see a firefighter, fitness trainer, police officer or lawyer and think, ‘if they can get better, I will get better.’”

On a typical day, O’Connor fields phone calls and email from across Ontario – and sometimes Canada – in her office at the Dr. Zane Cohen Digestive Diseases Clinical Research Centre of Mount Sinai Hospital. In fact, she has a network of IBD Buddies scattered throughout the country, available to connect with patients in any locale.

Popular social media applications have also expanded the reach of the IBD Support Network, netting new contacts from around the globe. Volunteers are active on Facebook, Twitter and Flickr, and provide input on the program’s website that features helpful resources for IBD patients unable to attend Support Network meetings at Mount Sinai.

Those attending monthly daytime and evening support groups benefit from discussion topics tailored to the specific needs of patients and their families. Each session is planned by the volunteers who comprise the IBD Support Network steering committee, including Fiedler and Andrade. Mount Sinai staff are on hand to provide input if needed, but volunteers have proven to be highly capable.

“Our patient-volunteers are helping us provide a continuum of care between hospital and community for other IBD patients and their families,” explains Catherine Coulthard, IBD Social Worker, Mount Sinai Hospital. “We’re helping them navigate the health-care system, cope with chronic illness, and recover. It’s a living example of Patient and Family-Centred Care. Our volunteers have been committed to this group for eight or nine years, so that really shows the value of the program.”

Although the Mount Sinai-based program is recognized as a go-to source in Canada for information and patient support, O’Connor and Coulthard strongly believe similar programs can – and should – be started at other health-care institutions. The IBD Support Network owes its cost-effectiveness to the excellent care provided by volunteers who prove that even distance is no boundary to compassion.

Today, Fiedler is working with IBD clinical research teams at Mount Sinai and the Hospital for Sick Children, a pursuit that stemmed naturally from her involvement with the IBD Support Network. In addition to contributing to a study on Crohn’s disease, Fiedler and others are working hard to establish a teen peer IBD support group for SickKids families, based on Mount Sinai’s model.

“To come through the other side and be willing to give back is absolutely huge,” says Coulthard. “Our volunteers are ambassadors for the hospital, for IBD, and for survivorship.”