How care for those with Crohn’s and colitis has changed over the last 50 years
What was it like to live with Crohn’s or colitis in 1974 when Crohn’s and Colitis Canada was created compared to today? Susan Lorenz of Toronto was diagnosed with Crohn’s disease in 1976 and Pat Logan of Thunder Bay was diagnosed in 1979 with Crohn’s as well.
Diagnosis
Susan was hospitalized at Toronto’s Hospital for Sick Children when she was 15 years old in December 1975, and diagnosed in January 1976. She was upset at the thought of what the rest of her life would look like. There were no support groups, nobody she could connect with. She felt alone.
Pat was diagnosed with Crohn’s in 1979 at the age of 22 when she was at the Mayo Clinic in Minnesota for follow-up to foot surgery. Between her two visits, she started having nausea and vomiting. Her family physician thought she could have Crohn’s. He wanted her to check in to a Thunder Bay hospital, but she felt that her foot cast change was more urgent. She went to the Mayo Clinic where they looked into her intestinal issues and diagnosed Crohn’s.
High school photo of Susan
Treatments then and now
Susan and Pat both underline that in the 1970s and 1980s, treatments were limited. In essence, there were four – pain medication, hospitalization, surgery and prednisone, a steroid to treat inflammation.
Pat summarizes: “Prednisone and I were not good friends.” When she was on it, her body became hypersensitive to touch. Even the snap on her jeans would bruise her belly.
In 1986, Pat had internal bleeding that led to surgery to remove almost two feet of her bowel. In 1989, she was in hospital for a bowel rest, something she had to do regularly at the time. She started experiencing the most intense pain of her life but both her gastroenterologist and family physician were out of town. For four days, she was given pain medications that did little for her. When they came back, they found that scar tissue from her 1986 surgery had blocked her bowel. She had surgery to remove the obstruction. Pat went on a leave of absence from her workplace in 1990. She stopped working altogether in 1992.
Pat Logan, December 1977, prior to her diagnosis
A turning point came in 2008 when she started a biologic drug, her Crohn’s became more manageable. Since then, she has spent much less time in hospital and emergency departments. Prior to 2008, she saw her family physician and gastroenterologist monthly. With every season change, she spent two weeks in hospital, on intravenous and needing a bowel rest. Now she sees her gastroenterologist annually and has not been hospitalized since 2020.
Susan had a similar experience with limited drug choices. As she could not tolerate prednisone, she had to try more drugs. In 2013, she had 2.5 feet of her intestines removed and an ostomy created. Before her surgery, her husband asked her to pull through so they could go to Gros Morne Park in Newfoundland – a vacation they had booked just before she went to hospital. The day of the surgery, they watched Titanic and when she was on the gurney before going into surgery, he held her hand – just like in the movie – and said she had to get through this because they still had to go to Gros Morne. She got through and they went on their planned but delayed trip two years later.
Susan also underlines that over the years, there were other health impacts: “Crohn’s affects more than just your bowels – it also affects your kidneys, you develop arthritis, constant fatigue, no energy, your mental health suffers.”
Living your life with Crohn’s
Susan and Pat have done their best to live their lives to the utmost after almost 50 years with Crohn’s.
Susan was a figure skater prior to diagnosis and kept up her interest in the sport, eventually moving into coaching. Through all the years of treatments, medications and surgeries, she held a full-time role as an Early Childhood Education Teacher, as well as teaching figure skating part-time. She now volunteers at University Health Network, helping others with Crohn’s as they go through their surgeries. She continues to skate recreationally.
Pat sums up her years: “Crohn’s invaded my body like an unwanted guest that took over a room in my house of life. It affected everything I loved.”
Susan as a high school figure skater and still skating in 2024.
Today, family is central for Pat. Her son was born in 1984. She has had two grandchildren since 2014. She loves entertaining and being around people, especially her family. If there’s a chance to dance, that adds to her joy.
An important outlet and support for her since the 1980s has been the Thunder Bay Chapter of Crohn’s and Colitis Canada. She volunteered until she no longer could. She has always taken advantage of the information offered and the connection with others. Just being able to make friends and exchange life experiences has been vital. Getting insight into even mundane aspects of life has been helpful. For example, she has asked when people do their laundry (Answer: At 3:00 a.m. if you are up and cannot sleep).
Pat sums up her experience: “In these 50 years, we went from the stone age to the digital age in terms of treatments. I’ve benefited from all that progress.”
Pat with her grandchildren Wesley and Madelyn Logan in 2022
Crohn’s and Colitis Canada celebrates its 50th anniversary in 2024. We work relentlessly to find cures and improve the lives of those affected.
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