Crohn’s patient endures long journey toward stable health

Sandra Zelinsky can barely remember a time when she was not living with Crohn’s disease. Yet the 100 Mile House resident says she continues to live well in the house that she and her husband built in the northern British Columbia community. But she notes her idea of good health and living well are very different from someone who does not have to cope with a chronic disease that affects every area of life.

Once athletic and involved in a number of sports, Zelinsky also took courses in cosmetology and later ran her own business despite her severe inflammatory bowel disease (IBD). Eventually, however, she had to give up her business and many other activities to conserve her energy and deal with her condition.

“A chronic illness like Crohn’s is constantly evolving,” she says. “It is difficult to cope at first, especially when you know something is really wrong but you haven’t been diagnosed.”

Although she had had health issues for some time, her condition was officially diagnosed only after a major flare-up when she was 19 years old.

“I was going to the washroom about 30 times a day and was waking up every hour with night sweats and tons of pain and cramping,” she recalls, adding that she lost close to 30 pounds in a month. “I was exhausted because I wasn’t sleeping. I was going to school at the time and had a hard time getting through the day.”

Too tired to prepare a meal or eat, she would collapse into bed as soon as she arrived home, and the cycle of hourly trips to the washroom repeated throughout the night. For the next eight years, she struggled with trying to get the disease under control and maintain a regular schedule.

“I had to plot my days around knowing where the washrooms were,” she says. She also tried to explain her condition to those around her. “In some ways, talking about it made it easier for me and I thought it could help other people, too. I also told myself that if I dated anyone who couldn’t handle the situation, it was a good way to weed them out.”

On the long road to stabilization, she had two major surgeries and had to deal with a separate major health issue. Her first emergency surgery resulted in the removal of her entire colon. She says that improved her quality of life because she no longer had to deal with constant pain. She did, however, have to cope with a permanent ileostomy.

An ileostomy is an operation in which a small section of the small intestine (ileum) is diverted to an artificial opening (stoma) in the abdominal wall. Bodily excretion is collected and removed through a sterile pouch.

Three years after the first major operation, she required further intestinal surgery.

“Not long after all that, I met my husband and we moved to Calgary,” she says. “That changed the whole trajectory because I saw a new gastroenterologist. I started taking a treatment, Sandra Zelinsky emphasizes the importance of patients staying informed about their treatments and ensuring they have access to treatments that work for them. based on his recommendation, and it worked amazingly for years.”

The next health challenge for Zelinsky came in 2010, when she was diagnosed with breast cancer and had to face more surgery and therapy. This was complicated by her Crohn’s, because the treatments for the two conditions were in conflict. Around the same time, the treatment she was using to treat her IBD was no longer proving effective for her.

She was prescribed another treatment, which, she says, never worked as well as the original. After four years on it and two additional intestinal surgeries to deal with strictures, she asked for a different medication.

“I knew I was running out of options,” she says, adding that she has always believed in quality of life rather than longevity. The next treatment, which she has been using for the last year, however, “seems to be working well.”

It has been a long, difficult journey toward stability for Zelinsky, as it has been for many others. This is why it is important for patients to stay informed about their treatment and have access to the treatments that work for them.

“I would be very upset if I had to switch to another treatment,” says Zelinsky. “I am on my third treatment and I know that any change has the potential to rock the boat and can be a big deal. I have severe Crohn’s disease, and finding a treatment plan has been very difficult for me.”

“The big challenge for patients with Crohn’s is that it is a very private and personal disease,” says Eric Thomson, manager, public policy and stakeholder relations, for Crohn’s and Colitis Canada.

He says the organization’s goal is to improve patients’ quality of life while seeking cures. “For many people living with Crohn’s or colitis, it can take years of trial and error with various medications to achieve remission. Effective treatments can lead to stability and allow patients to have active and healthy lives. Doctors and their patients must be able to select the treatment option best suited to each patient’s individual circumstances.”

There are many options in the treatment of autoimmune diseases. All treatments have benefits and risks, some of which can be serious, and can vary by individual. If you are living with Crohn’s disease, talk to your doctor about treatment options that might be right for you.

Like Zelinsky, patients must be their own greatest advocate for treatment stability, and must communicate that goal to their physicians.