When Hope Changed Shape
For a long time, I believed that if I just held on a little longer, something would work.
If you’re just joining the ride, I recommend starting from the beginning. Each post builds the trail that led me here.
That had been the pattern for years. A new medication. A new plan. A temporary reprieve. I had learned to live in that space — the narrow gap between flare and relief — convincing myself that the next thing would be the one that finally stuck.
Zeposia was supposed to be that thing.
Six weeks in, there was no improvement. February and March were brutal. I continued to lose weight and blood. My energy disappeared. Prednisone was the only thing keeping me upright. My blood glucose spiked dangerously high on multiple occasions. I was physically depleted and mentally exhausted.
I reached out to Dr. Won and asked a question I had been avoiding for months:
How soon could surgery happen?
His answer was simple.
Four to six weeks.
That conversation came just days before my second-opinion appointment with Dr. Margaret Schiesow, Chair of Inflammatory Bowel Disease at Kaiser Permanente. Courtney joined me. By then, I already knew what the appointment was going to confirm — but I needed to hear it from someone else.
We sat together as Dr. Schiesow reviewed everything. My full medical history. Every medication I had tried. Years of tests and lab results. I explained how I felt and admitted, out loud, that I had resigned myself to surgery.
Then she showed me the data.
I had lost more than fifty pounds in under a year. My iron levels were severely depleted. I was anemic. My fecal calprotectin — a marker of colonic inflammation — was extremely elevated and climbing steadily, with no indication of improvement.
She didn’t soften it.
She didn’t hedge.
She said, simply:
“You are dwindling.”
The word landed harder than anything else I’d heard.
My mind immediately went to my mother — to watching her dwindle in her final months. I nearly broke down in that office. But alongside the grief, something else arrived with startling clarity.
I knew the decision was right.
My colon had to go.
Dr. Schiesow didn’t try to persuade me. She didn’t need to. She talked honestly about what life could look like after surgery and offered to connect me with other patients who had been through it. Many of them, she said, wished they had made the decision sooner.
Her focus was practical and grounded: getting me to surgery as strong as possible.
Daily protein shakes.
Omega-3 supplementation.
Light daily walking when I could manage it.
Discontinuing all remaining medications, including Zeposia.
Completing my prednisone taper just days before surgery.
For the first time in months, things felt aligned.
When we left her office, I wasn’t hopeful anymore — but I was certain.
Hope had kept me going for years. Now it had changed shape.
This post reflects personal experience. A medical disclaimer is available on the About page.