Hi, my name is Susan Lorenz and I have had Crohn’s disease since I was 15 years old, that’s over 47 years! I was diagnosed in 1976 and one of the few in Canada. There was not a lot known at that time about Crohn’s and not a lot of medications you could take.
When I was in grade 10, I was diagnosed at the Hospital for Sick Children. Some of the symptoms were losing weight, loss of appetite, and severe abdominal pains. During my hospital stay, I had numerous tests done and was in hospital for three weeks. At first, the doctors thought it was MS, then they said it could be Leukemia. Tests came back as Crohn’s disease with 3 inches inflamed in my ileum.
While on different medications for Crohn’s (steroids, biologics, and anti-inflammatories), which after a number of years didn’t work anymore, I was hospitalized a number of times with dehydration which caused kidney disease, skin problems, as well as having many blood transfusions, iron transfusions, an NG tube because I was unable to eat and TPN feeding to help get my strength back.
In 2013 I had surgery where they removed 2 ½ feet of small bowel, and gave me an ileostomy! I fought every step of the way to prevent surgery but my bowel was starting to perforate so I had no choice. That was the best decision I have ever made! So grateful for it!
Determined not to give up and let it control my life! I was discharged from the hospital one week before March Exams, so I had to write them! That year I had to repeat a couple of courses and took extra time to get my grade 12. Not an easy task after being so sick, but with my family’s help and love, I graduated high school. My weight went down to 65 lbs, and I weighed about half my normal weight.
Extremely hard at that age when you’re concentrating on your appearance!
During high school, I was a competitive figure skater, and after becoming ill, I had to learn how to walk again, as well as skate!! But I was determined to get back on the ice!! After about three months of being off the ice, I bravely went back on and started from the beginning. Since I lost many of my skating skills, I decided to go the coaching route and have been a figure skating coach for over 35 years. After completing high school, I went to college and graduated with my ECE (Early Childhood Education) Diploma and furthered my education with a Medical Office Administration Certificate. With the Office Administration Certificate, I worked in a children’s mental health centre as a receptionist and Intake Worker.
During all my surgeries, my husband Grant was right beside me every step of the way!!! In the hospital, we watched the movie “Titanic,” and when the porter came to take me to the OR, Grant held my hand, and he said, “Don’t let go, Sue, we have to go to Gross Morn National Park together.” Well, two years after that, we traveled to Newfoundland and walked through Gross Morn National Park!
I no longer have to be anxious about going out and can get on the local bus without worrying where the next washroom is! Presently, I am able to work full-time as an ECE Teacher and travel to different countries. I continue to skate for fun and go out with family and friends.
Always take a positive attitude towards my illness and won’t let it stop me!
My goal is to help other people through this disease and to let them know they are not alone! You can do anything, keep a positive attitude, and never give up! We are all in this together!! Life is to live!