My Story

IMG_3711Growing up, I had tummy aches for as long as I can remember. I know they were bad when we first moved to Vancouver from Victoria after my parents divorced. I remember missing school often and visiting the doctor regularly. Lactose intolerance was what my doctor said but that didn’t explain the split that was developing through my perineum. It was extremely uncomfortable. I tried hemorrhoid creams with no relief and instead suffered in silence. I was tired of telling my doctor about my symptoms and soon came to terms with my reality of pain, diarrhea and anal fissures with still no diagnosis. I was 11 years old. I was embarrassed, ashamed and in constant pain. I look back on that time and wonder why it took so long for the doctors to help me? What did I do to deserve this? It is really hard being young and dealing with any type of illness, but especially bowel conditions. Your self-esteem can’t help but to be affected. I suffered for another couple years trying several elimination diets before my family doctor FINALLY sent me to Children’s Hospital to see a Gastroenterologist, I was 14 years old. I guess the fact that I wasn’t growing or developing like other young girls my age finally tipped everyone off that they needed to do something. I was booked for a colonoscopy. I remember waking up from the anesthetic and through my drowsy confusion hearing my mom crying. She told me I had an inflammatory condition called crohn’s disease, there was no cure, and I would have it for the rest of my life. I remember feeling a great sense of relief that I wasn’t crazy and now that I had a diagnosis the doctors’ would know what to do. However, looking back I now realize how detrimental those words were on a subconscious level….”You have a condition and it has no cure, you will have it for the rest of your life.”

The inflammation affected my large intestine and rectum, my doctor referred to it as crohn’s colitis. I was started on medication including low dose steroids and suppositories. Things improved a bit but there wasn’t a day that went by that I wasn’t reminded that I had crohn’s, whether it was lying on the couch doubled over in pain after eating or the horrible embarrassment of stinking up a bathroom and hearing the awful things people would say. It was interesting that as soon as I had a diagnosis, I wanted to forget it and pretend that I was “normal” …still not sure what that is except a setting on the washing machine, but as a teenager it seemed pretty important. Even though I had great friends during high school, who were loving and supportive, I still felt alone and unable to express my grief. The sadness was buried and hidden by a smiling and stoic girl who believed that there was no point in getting upset because it wouldn’t change things. I now realize that I had a core belief that I was not loveable, if I expressed anger or sorrow. I can see how this belief has shaped and guided me through most of my life.

Despite the cramping and frequent trips to the toilet (6-12 times a day), I managed to find joy and success through my teen years and 20’s. I travelled the South Pacific for 8 months with a girlfriend at age 19. It was an incredible experience exploring the east coast of Australia in a VW camper van. I felt healthier and happier than ever before! I fell in love. I completed my degree in Kinesiology from Simon Fraser University. I backpacked around Europe. I worked part-time jobs. I did not let crohn’s disease slow me down. Through out these years, I tried many different medications, natural treatments and strict diets. Despite disappointment after disappointment, I never lost hope and always believed the next thing I tried would be the “miracle cure” I was looking for…that finally I would have some relief. I enrolled in all the latest clinical trials for new and upcoming medications. During my mid 20’s I did experience an improvement in my symptoms while taking Remicade. From age 25 to 33, I felt pretty good until the Remicade Infusions slowly lost their effectiveness. Things really took a downhill turn when I had a major flare-up in the summer of 2011. I had just started a sabbatical from work to go traveling and focus on creative pursuits. Needless to say, travel plans were cut short and by the end of the summer I was in the hospital. The next six months were spent in and out of the hospital being fed with a tube in my arm and on high dose steroids with no real improvement. I watched my weight drop from 115 to 85lbs, even though the amount I was eating was actually increasing. I had anal fistulas that made everything painful, even sitting could be excruciating. I never slept more than a couple hours without having to get up and go to the bathroom. I was exhausted and scared as I watched myself wasting away. What an incredible lesson in the art of surrender. I felt helpless and yet at the same time incredibly powerful, as I came to the difficult decision to have my colon and rectum removed. I meditated and prayed for months before making this decision. I knew in my heart that I was not ready to die yet and, for whatever reason, this was the path that my soul was being asked to take. I underwent surgery in May 2012 and had a permanent ileostomy. While still in the operating room waking up from the anesthetic, I was overcome with grief, sobbing and inconsolable. There was so much fear and sadness coming up to be processed that I didn’t know what to do with it at all at first. The pain medication helped numb some of my feelings but my body was still crying out to be heard. As a result, my recovery was a lot slower. My incision wound did not heal, in fact it had opened up a few days after surgery, and I had a gapping hole in my abdomen about two inches long and an inch deep. I had high fevers and nausea, it looked like I had an infection but they couldn’t really figure out what was going on so I was kept on heavy duty IV antibiotics for several weeks. Eventually, I was back in the operating room so my incision wound could be sewn up again. After 6 very challenging weeks in the hospital, I was finally able to go home. I still had struggles with my incision wound and it opened up again. I had community home care nurses visiting me every couple days to help change dressings. Why was this happening? Hadn’t I been through enough? When would it end? This was another opportunity to practice surrendering and allowing. It was interesting to notice that I was also choosing to heal more than just my physical body. My emotional body was also asking to be cared for. Situations and challenges came up that helped me find my voice, express repressed anger and set clear and healthy boundaries for myself. By tending to my inner healing, my outer healing was greatly accelerated and suddenly my incision wound healed.


It has now been 6 months since my last surgery, and I am feeling like a healthy vibrant person again! I am so excited about all the amazing opportunities that await me now that I am free from pain, and the toilet. What an incredible journey this has been with gifts that I am just beginning to understand. I am still in awe of the incredible strength and courage that I have discovered within. I am now choosing to see the divine perfection in everything, and everyone, even when it is messy and ugly. I am practicing loving my body with all its beautiful scars and external plumbing system. I am learning the power of surrender and the freedom that follows. With open arms, I embrace and celebrate my second chance at this incredible life!

6 thoughts on “My Story

  1. So wonderful to hear of your progress and that the adventures continue! As a fellow Ostomate, I look forward to following along on the journey.

    • Thank you, for sharing and inspiring me as well when we met over coffee, your courage has helped me the past 6 months!

  2. What a blessing you are Jules; so courageous to share your heartfelt story and inner thoughts. My dear sister had an ileostomy, so I learned a little. She called it “her friend” and she cared and respected it as if it was one of her children. Jules, I feel so grateful that you are ALIVE with such grace; inside and out I feel badly that I wasn’t able to help. It was a secret that Holly kept. In knowledge there is power, so I salute you for teaching us. In turn, we can teach others. Thank you!

  3. Hooray for freedom from toilets! I love the last paragraph of this page. I am on a similar journey of learning, and I look forward to getting to know you better through this blog. Love, Alyssa

  4. Thank you for sharing such a great story. It’s funny I too have a very similar story to you and had my permenant Ileostomy surgery May of 2012. Where did you have your surgery?

  5. Wow your story brings back a lot of memories. Great story so glad to hear you’re getting back to life again. having surgery definitely changes your outlook on life and really shows you what’s important in a whole new light. Muhamad Ali, once said, “I hated every minute of training, but I said, ” don’t quit. Suffer now and live the rest of your life as a champion.”. Enjoy Life

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