part0015

As 33-year-old Olga Kesler slowly opened the door of her new family doctor’s office, she paused abruptly, showered with anxiety. “Will this doctor understand and help me?„ she fretted. Olga had moved here three months ago and it had taken her some time and effort to locate a family physician. By now her medications to control her Crohn’s disease as prescribed by her gastroenterologist, located a thousand miles away, were running dangerously low. She was desperately in need of help. Over the last months, Olga had experienced several exacerbations of her Crohn’s while traveling across the country on work-related assignments.

Suddenly, or so it seemed, Olga had met the man of her dreams: a man who shared a similar passion for the business of web design and expressed values and beliefs in concert with those of Olga. Within two months they were married. Together they decided to relocate their collective business ventures – and indeed their lives – to this new community.

As the door of the doctor’s office closed, Olga trembled. “ So much has happened to me in the last few months,„ she silently refl ected, “what am I going to do? My Crohn’s is getting worse and I can’t let Damian know. He’ll never understand. „ Olga fought back her tears as she approached the receptionist’s desk.

Upon meeting Dr. Coulter, Olga recounted her story. Her primary medical concern was that her Crohn’s disease had not been well-controlled in the past year. She had been previously followed by a gastroenterologist, but in the last year, as Olga crisscrossed the country, she had been forced to seek care from several emergency rooms for exacerbations of her Crohn’s. Each time, the physicians in the various ERs had admonished Olga to stop work and receive appropriate treatment for her Crohn’s. Yet she persisted on, driven by the need to excel in the new business she and her husband were launching nationwide. Olga knew she was her own worst enemy, but she couldn’t help herself. “I want this project to succeed,„ was her ongoing mantra, and Olga would push her pain aside.

She had been diagnosed with Crohn’s disease in her mid-20s. Since there was no family history of gastrointestinal problems, the diagnosis was a shock. Her previous family physician had suspected Crohn’s disease after several weeks of weight loss, poor appetite, and bloody, diarrheal stools. With the help of a local gastroenterologist, Crohn’s was diagnosed and was initially brought under control with medications alone. Olga had been symptom-free for almost five years until a year ago, when she began experiencing recurrent exacerbations, with no apparent trigger. The onset of her flare-ups coincided with the couple’s decision to expand their business. “It was kind of bad timing,„ Olga explained. Olga did not understand why she had experienced so many severe Crohn’s exacerbations in the past 12 months, as she felt she had been carefully monitoring her diet and strictly following her medication regimen.

Since her initial diagnosis, Olga had undergone a range of emotions. Initially, she was confused as to why this had happened to her when no one else in her family had experienced anything similar. Olga slowly came to terms with her diagnosis, which was made easier by the fact that her Crohn’s initially came quickly under control easily with medical management.

When Dr. Coulter asked about her feelings about the exacerbation of her Crohn’s, she clearly stated, “I feel very limited by it.„ More specifically, Olga explained, “I can’t be far from a washroom when I have an exacerbation, I can’t go out … sometimes I can’t even eat. This past year has been very hard.„ With a warm smile on her face Olga added, “Sometimes it is hard to get to the washroom on a plane, especially during take-off and landing.„

Olga explained to Dr. Coulter that she disliked having to take steroids because of the side effects of nausea and Cushingoid symptoms she suffered. She stoically described how her prior surgeries had been very difficult to endure. Previous procedures involved multiple colonoscopies, two prior bowel resections to remove the inflamed and damaged portions of her large intestine, and an appendectomy. Olga then stated one of her worst fears, “I hope I won’t ever need a colostomy; that would be awful.„ However, Olga’s greatest fear was the impact of her Crohn’s disease on her ability to get pregnant and the implications this had on the future of her marriage.

A major dimension of Olga’s illness experience was her role as a wife. She desperately wanted to maintain her sexual intimacy with her husband and of equal importance to fulfill their mutual desire to start a family. “Having children is a dream Damian and I both cherish,„ shared Olga, with tears filling her eyes. “I really worry about what will happen to us if I don’t have a baby.„ Olga dabbed at her eyes with a tissue and took a deep breath. But Olga knew there were implications for whether or not she could conceive and then carry a pregnancy to term given the poor control of her Crohn’s at the present time. Olga believed that if she could get her Crohn’s disease under control, then she could reassure her husband about her health and the possibility of children in the future.

In the last few months, during the exacerbations, Olga described how her marriage to Damian had become more strained. “What does Damian know about Crohn’s disease?„ Dr. Coulter inquired gently.

“Oh, Damian is a smart man,„ Olga responded, quickly regaining her composure, “and he certainly understands what Crohn’s is and how it affects me, at least theoretically,„ she added. Olga explained how Damian had known about her diagnosis prior to their marriage but had only been with her when she had been symptom-free. “So my flare-ups have been both a surprise and a worry for him,„ she said sadly, “and I know he is concerned about me. I think it frightens him to see me in such pain. And I recognize that I am a different person when I have a flare-up. I get quiet and pull away. It’s not easy for Damian.„

As a slight frown appeared on her face, Olga slowly continued. “But I know Damian struggles with the impact it has on our life together, in particular our sex life, which has been nil as of late.„ Olga’s warm smile returned, “It is pretty hard to get pregnant if you don’t have sex!„ Just as quickly, she became serious again. “Damian now wonders if I will ever be healthy enough to get pregnant, and I wonder what will happen to our marriage if I can’t!„ Olga’s tears returned.

Dr. Coulter carefully listened to Olga’s experience of living with a chronic illness and acknowledged the many challenges she was currently facing. “How can I help you?„ he inquired.

Olga’s clearly articulated her expectations: she was in need of a family doctor who would help coordinate her care and refer her to a gastroenterolo-gist for ongoing management of her Crohn’s. She also expected her family doctor to listen to her concerns and advocate for her when required.

Olga understood that Crohn’s disease is a chronic illness that can fluctuate between being controlled and exacerbating. But at this point in time, Olga was frustrated by her inability to get her Crohn’s under control. Olga needed encouragement and hope that control could be regained and maintained. Olga also needed to be empowered to feel that she had a crucial role in the course of her illness.

Dr. Coulter addressed each of the dimensions of Olga’s illness experience – her feelings and ideas about her Crohn’s, how it was impacting her daily roles and responsibilities, and finally her expectations of her health care providers. By exploring not only her symptoms but also her unique experience of illness, he helped Olga regain control of her life. It also reminded Olga that she was not just a set of symptoms. In the future, the ongoing care by Dr. Coulter, her family physician, would be instrumental in helping Olga cope with the chronicity of her illness as well as its contextual implications as well.

“Thank you, Dr. Coulter,„ Olga said as she rose to leave the examination room. “In the last year I have felt like I was just a bundle of symptoms, but …„ She paused for a moment as if searching for the right word or phrase. “But,„ she continued, clearing her throat, “today you made me feel, well this may sound silly, like a whole person. Thank you for that.„