As a 26 year old newly-wed, I was diagnosed with colon cancer.
Seemingly fit and healthy, with good genetics, education and diet, how did I get to this point?
Perhaps I’ll never know. But, if I could share some insights and experiences of my own that may potentially help someone else through similar hard times, it would be truly gratifying.
I grew up in an extremely rural and peaceful setting – spending lots of quality family time outdoors in nature, my mom cooking from scratch most of the time… however, as we grew into a family of 3 high school-aged competitive swimmers, commuting for hours a day, schedules got busier and life got hectic. Suddenly, ‘baking from scratch’ meant using a Betty Crocker cake mix… and dinner became Wonderbread sandwiches out of a cooler in the car. Early morning and after school practices dominated our lives and every weekend was dedicated to traveling for competitions.
Somewhere in those early teen years I started to experience frequent abdominal pains, bleeding, cramping, chronic diarrhea and other severe symptoms of inflammatory bowel disease. After a few years of appointments with various gastroenterologists, I was diagnosed with ulcerative pan-colitis – an autoimmune disease causing chronic inflammation and ulceration of the entire colon. I have a whole slew of theories about its potential origins since NO ONE in my family/extended family/ancestors has/had it (though it’s claimed to be highly genetically influenced).
I won’t get into my theories here because there are too many interwoven possibilities and I would need to do some serious post-grad studies … Ultimately, I ended up on anti-inflammatory medications for nearly 2 decades with occasional steroids, yearly colonoscopies, biopsies and many other *lovely* tests – nearly always surrounded by patients who were 60+ years my senior.
[I feel it’s important to note that through many years of appointments with gastroenterologists (the so-called ‘specialists’ of the gut/GI tract/digestive system), there was never an emphasis on the importance of nutrients and sustenance we put into our guts – let alone the importance healthy of gut microflora. The closest thing to dietary advice I received from these specialists was to “avoid beans, cabbage and broccoli”?!].
For as long as I can remember, I was always an exceptionally shy and yet intense kid – always wanting to hide out during large gatherings, but wanting to win trophies at the same time. Things that gave me extreme anxiety during my teens included: attending class, taking the bus, crowded places, car rides… Basically any time when access or proximity to a private (or any) washroom was limited. As if simply being a teenager wasn’t hard enough – having ulcerative colitis (UC) / inflammatory bowel disease (IBD) was particularly shitty. (… see what I did there? Shitty… 😉 )
There are a lot of other uncomfortable and/or terribly embarrassing effects of this disease, but maybe TMI… I had a few years (during uni and post-uni travel) that were fairly stress-free and my guts seemed to tolerate (maybe in part due to the unrestricted toilet access?), but any times of intense stress – exams, job-related, emotional: It. Was. Awful. Too much to bear, so I decided to try some new things – ANYthing to see if I could get it under control myself (since clearly years of medication HAD NOT solved the problem).
I experimented with vegetarianism (regrettably, at the time, this meant I was eating a lot of processed foods – pastries, cheese and ice cream… *not* a quality veg diet). As I got more into cooking for myself, I explored other diets and lifestyle/activity/mental well-being choices and enrolled in a holistic nutrition program.
Unfortunately, this intriguing culinary and lifestyle exploration came a bit too late, and at 26 (following my 13th colonoscopy…), I was diagnosed with colon cancer. Quite a shock just 3 months after getting married and one class into the holistic nutrition program (!!!!!).
I will never forget walking home from the hospital that day – alone with my thoughts and worries – in complete disbelief. Hours earlier I had been eagerly planning an exotic honeymoon and looking forward to starting a family… now, I was wondering if either would happen. Ever. For a while, life just stopped. It was like someone hit a pause button and absolutely nothing mattered. It was an incredible reality check for me, my new husband, our families and close friends.
Due to the severely inflamed and perforated state of my colon, there was no way to simply remove the tumor or the affected section. The entire colon needed to be removed and laparoscopy (surgery through a small incision) was sadly not an option in my case. Going into my first major operation (8 hours on the OR table, the removal of my colon, rectum and 70 lymph nodes, construction of an internal j-pouch hidden beneath 40 surgical staples, plus the hook up of an external ileostomy bag) – somehow – I felt fairly brave and confident.
But that feeling quickly crumbled when I awoke to the realities of my new anatomy and the unfortunate post-op “care”. Shortly after I awoke, my epidural ran out – with no back-up for over an hour, the indescribable wrenching pain of a freshly stapled 10″ wound down my abdomen caused the incision to split wide open, ultimately becoming dehisced and infected. Needless to say, I was in the hospital for a long time. On the bright side, the MRSA infection granted me a private room – in isolation. Silver linings? 🙂
The smell of hospital soap and disinfectant still makes my stomach turn, but those years are (mostly) behind me now.
When discussing next steps with my oncologist, I emphasized my desire to have children someday, and so I (gratefully) managed to dodge chemo and radiation treatment.
I spent my first year of married life either on an operating table, in a hospital bed, or at home on a bed lined with towels and gauze to collect the fluids oozing from my body in all directions. After many months, we discovered that the hospital had set me up with the wrong external bag system, which explained the frequent leaking and stoma irritation (super romantic, I know….) And at 5’7″, I was down to 110 lbs – weak, frail and grey.
After the pathetic dietary advice from the hospital dietitians (i.e. “avoid vegetables and eat white bread”), and the neglectful and dismissive post-op rehabilitative advice of home care workers, I was now being admitted to hospital with rupturing ovarian cysts. The ER doctors told me that my ovaries would need to be removed and I would never have kids. Seriously?! W.T.F.
Feeling like I was completely wasting away – physically, mentally and emotionally – it was time to take my health into my own hands. I refused to accept any of these bleak offenses. And somehow, all at once, (whether accidentally or intentionally) a handful of incredible people entered my life, introducing me to things like Traditional Chinese Medicine, nutritional immunology, acupuncture, Ayurveda and meditation. After all, how was my body supposed to recover from these surgeries, discourage further inflammation and promote overall wellness if I continued to fuel myself with cream cheese, croissants and sadness?!
My focus shifted to my immune system and maximizing nutrient-dense foods so that my body could heal and function as it was designed to. Human physiology is *so brilliant* in its mechanical design and capability – if we fuel it and treat it properly. Opting for fuel and impact over convenience and fillers, my body began to thrive.
Within a few months of my take-down surgery (connecting the internal j-pouch and removal of the ileostomy), I had gained my strength back and was healthy enough to enjoy an adventurous (2-year-belated) honeymoon, hiking and white water rafting in the rain forests of Central America. And, within days of my ovary removal prognosis, my hemorrhagic cysts had ‘mysteriously vanished’ from my latest MRI scan and I was pregnant with baby #1! Take that, ER docs :p
Two *fantastically healthy* pregnancies later, I have continued my digestive learning and understanding of the human body’s incredible capabilities. My abdomen will always be a bit of a mess, but my ovaries remain intact and I have gained a new sense of spirit and self-awareness that will be with me for life!
In some F’ed up way, the silver lining to my years of pain and indescribable toilet anxiety is that I have learned SO much about nutrition, the human body and the power (both mental and physical) we have over our lives. If I never had this life altering diagnosis, maybe I wouldn’t have such incredibly healthy and vibrant children, maybe I wouldn’t have the same appreciation for the little things in life…. And maybe I would still be eating Wonderbread sandwiches while stressing the small stuff.
If you have questions or comments, please feel free to contact me, using the form below.
Another resource for anyone considering j-pouch surgery or wondering what life is like for “j-pouchers,” this is an eye-opening forum, worth checking out: j-pouch.org . Discussion topics include pre/post-op, bowel obstructions, pouchitis, birth experiences, men’s/women’s issues, k-pouch, family support chat, stoma care, emergency, fistula… good times.