Guest Blogging Series: Kate offers realism about the highs and lows of adjusting to a stoma.

Kate was diagnosed with Crohn’s disease aged 14. She fought a long 3 years while her doctors eliminated medical treatment after medical treatment, searching for one that would stop her body from attacking itself. There is no cure for Crohn’s and Kate was told the best case scenario was long-term remission, where she would have a “relatively normal quality of life.” Here is her story.

3 years after my diagnosis, aged 17, I finally found remission after being introduced to a drug called Remicade. I felt like I had my life back! I graduated top of my high school, went to college and got a degree in Biology. I got my teaching license and moved to Brooklyn. During this time, Crohn’s was something I had to manage. Every 8 weeks I would get my Remicade infusion, sometimes a side effect would pop up that I’d need to address, but it wasn’t a big part of my life now I was in remission.

But not too long after I got to New York, I started to get sick again. I can’t remember the exact moment. I have a vague memory of a nasty stomach bug hitting me during my first summer there, which I put down to a bad takeout or too much to drink. But then I had another bug, and another, and another. Until once a month became once a week and once a week turned into everyday. My inflammation markers kept climbing and I couldn’t stop losing weight. During this time, my doctors put me on new drug after new drug to try and get me back into remission. I was contantly in and out of the hospital for fluids, steroids, iron, and pain control. I was 23, just starting my career, learning a new city, all while trying to manage my declining health. Each new medication required months of waiting, hoping, wondering when (if) I would feel better. I was malnourished, anaemic and exhausted. Then my doctor brought up a surgical option.

At first, the idea of surgery seemed like a great idea: offering me a short-term pain for possible long-term gain. This seemed worth it. Then I found out about the bag. My doctor suggested a diversion surgery: They would re-route my digestion to give the inflamed intestinal tissue a chance to calm down. They would sew the end of my small intestine to a hole in the skin of my belly, creating a little opening called a stoma. I’d wear a bag to collect the output from my small intestine and empty the bag into the toilet.

I was no longer interested. I clung to the privilege of a “normal” body: I couldn’t fathom having a visible manifestation of my disease that I would wear around in plain sight. I dug my heels in and requested another option. My doctor said she would continue to treat me medically for, “as long I could tolerate it and as long as it was safe.” I kept on pushing. I believed if I ate the right things, exercised every day, was a good person and maybe even prayed… The tide would turn. I hung onto the prospect of finding the right dose of the right medication to feel better.

But I just got sicker. Eventually, my doctor told me surgery wasn’t an option anymore: It was the only option. If they didn’t intervene, I was going to die. She promised the bag would be temporary. Just long enough to let my damaged intestines heal, then they’d reverse the stoma. I fixated on the fact that it was temporary. I’d been sick for years, so I figured I could handle the bag for a couple of months.

Physically, I felt great while I was diverted. My appetite came back, and with it, energy. My skin glowed, my hair grew. I ate and ate and ate. But I was more depressed than ever. I felt disabled and disgusting. I would lay on the couch and count the threads in my blanket, begging time to pass. My surgeon told me that if I chose to reverse the stoma, there was a chance my symptoms would return. It wasn’t as simple as choosing between health and vanity. Life with a stoma requires specialized medical knowledge and daily maintenance. It’s an emotional, physical, and financial toll. After four months with the bag, I was back in the operating room for the reversal.

I’d exhausted every medical option on the market at that point, so my last shot was to enroll in a clinical trial and try one that wasn’t yet approved. Starving, feverish, and in unimaginable pain, I fought for 8 more months..But the drug didn’t work.  At the end of the trial, my large intestine was so destroyed the whole organ had to be removed. Once again, my only option was the operating room, and once again, I would wake up from surgery with a stoma. 

I’m writing this in response to an article published [in the BBC] about a court ruling in favour of someone’s “right to die” because they refused to undergo stoma surgery. They, like me, previously had a temporary stoma and like me, they hated it. But after my colectomy, I started to see things differently and I had a much easier time embracing my stoma.

I don’t know exactly what changed, but the fact it did change, and so drastically, gives me pause. Reading blogs written by people who had stomas was one of the only things that gave me hope. Hearing from people that were happy not in spite of their stomas, but because of them, helped frame my experience in a positive way. I wish I didn’t need a stoma. But my stoma is what allows me to sleep through the night, enjoy a walk around my neighbourhood, and eat without pain. My stoma gives me stability and allows me to plan for the future. And because I’ve faced what I considered to be the “worst case scenario,” my stoma makes me feel powerful and strong. Choosing life with a stoma meant overcoming my greatest fear. For anyone struggling to accept their stoma, you are not alone. I hope I am the evidence that it does get better.

Follow Kate’s journey here:

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post-colectomy vibes

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