Why getting my colon removed was the best decision I ever made
Ulcerative colitis is an inflammatory bowel disease that affects 0.3 per cent of the world’s population and approximately 100,000 Australians. Swelling, ulcers, abdominal pain, diarrhea and bleeding are just some of the symptoms associated with the illness. While many people are able to manage the disease and go on to live happy, healthy lives, some cases can be quite severe. Kate Bray has been living with ulcerative colitis for over 15 years. Here, she shares her story…
Have you ever sh*t your pants in a mall? I have.
I was diagnosed with ulcerative colitis at ten years old, but this nightmare didn’t happen until my final year at uni. I remember running into a store, grabbing the first pair of leggings I could find without even looking at the size, and just praying no one could smell me.
I was so ashamed.
But despite the wake up call, I was still very much in denial about my health.
And then, my body broke down
After graduation, I managed to survive three weeks in Europe without getting sick. Sometimes it’s like my body just knows when I have something important on and helps me out.
But when I returned from Europe, my body basically broke down. This was the beginning of a flare up that essentially lasted four years.
During that time I met my now fiancé. On our third date, I told him: “I have a disease called ulcerative colitis and I might need major surgery one day. Do you know what that is?”
Over the next few months, my health was going seriously downhill. It got to the point where I had no energy and I had to call a cab everyday to and from work.
It was no way to live.
Going to therapy saved my life
I went on Remicade (a biologic therapy drug administered by IV drip) and felt better than I had in years.
But then, I developed drug-induced Lupus.
I tried other steroids and biologic therapies, but nothing really worked. It took about six months for the Remicade to completely leave my system and from then on, my ulcerative colitis symptoms returned.
I’d had a taste of health and happiness while on Remicade and now that was just gone. I had all these big dreams for my life and I wasn’t able to achieve them. I felt so trapped in my illness. I felt like I was in a constant state of limbo, just barely surviving between trials of harsh drugs.
It was around this time that I started going to therapy.
I started to slowly feel better about myself the more I went, and my self-confidence started to build back up.
I sought solace in the online community
I began making friends on social media from all over the world, with a similar illness to mine. It really helped me feel like I wasn’t alone.
Someone who worked for Crohn’s and Colitis Canada posted about an opportunity in Amsterdam to be on a medical patient advisory board for a major pharmaceutical company. I immediately sent a message, and a couple weeks later, I was flown to Amsterdam.
This was a transformative experience for two reasons. First, it gave me so much hope to see that this type of work and research was out there. And second, it was the first time I’d met people with ostomies and J pouches (or at least met people who would openly share it). Most of them were happy, healthy, thriving, and not experiencing active flare ups like I was.
I had tried everything. But I hadn’t tried surgery.
I made an appointment with my health team, and made the decision to go through with the surgery.
I was worried I’d regret it, but after I came off my medication and felt the sickest I’ve ever been, I was just so excited to get my diseased colon out of me.
In the pre-op appointment, they marked the ostomy site. As soon as the nurse was finished, I burst into tears.
I was emotional, but I was hopeful.
I kept touching the right side of my stomach thinking, “My life will be so different from now on.”
Seeing my stoma for the first time was jarring
My surgery involved getting my entire colon removed and creating a stoma, which is a small piece of my intestine pulled through my ostomy and sewn to the hole where it healed to the outside of my stomach.
I spent one week in the hospital and during that time nurses taught me how to clean and change my bag and really helped get me ready for my new normal.
And even though I don’t remember much from that week in the hospital, I do remember I felt so much better right away.
Getting my colon removed was the best decision I’ve ever made
It’s now been one whole year since my surgery and I’m at the best place in my life that I’ve ever been. While I still have ups and downs, my career, personal life, and mental health are now where I always dreamt they’d be.
It took 15+ years of being on multiple combinations of harsh drugs, including nine combined years of Prednisone dependency, three different types of biologic treatments, and multiple therapeutic drugs (adding up to sometimes 20+ pills a day) – but I am so happy to say that I am finally prescription drug-free.
Sometimes people ask me if I regret not having surgery sooner. On the one hand, yes. But on the other hand, no. Because what pushed me to make that decision was feeling like I had tried every other option. And I know that coming to the decision myself was the only way I was going to feel completely happy going through with surgery.
I still have the option to undergo further surgeries to eventually create a ‘j-pouch.’ I’m still undecided on that and I’m in no rush. For now I’m spending time relishing in this new life and my new normal.
My ostomy has truly given me a new lease on life, and for that I will be eternally grateful.
You can follow Kate's life with her ostomy at @lovekatebray or on her website lovekatebray.com.