Two Paths, No Easy One
Understanding what surgery could actually look like.
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Once surgery entered the conversation in a real way, I needed to understand what it actually meant — not in abstract terms, but in practical ones. If this was the path I was heading down, I wanted to know exactly where it led.
When I met with Dr. Won, he outlined two primary surgical options. Both involved removing my colon — the source of the disease — but what came next looked very different.
The first option was a total proctocolectomy with ileal pouch–anal anastomosis, more commonly known as a J-pouch.
The second was a total proctocolectomy with end ileostomy.
On paper, both procedures aimed for the same outcome: improving quality of life by eliminating the diseased colon. In reality, the trade-offs were significant.
A J-pouch procedure involves removing the colon and rectum and creating an internal reservoir from the end of the small intestine. That pouch is then connected to the anus, allowing waste to pass through the body without the need for an external bag.
It sounds appealing — and for many people, it works well.
But it’s not a single surgery. The procedure is done in stages. First, the pouch is created and a temporary ileostomy is put in place to allow it to heal. Weeks later — often eight to twelve — another surgery reconnects the pouch. In some cases, complications require additional operations.
What gave me pause wasn’t just the number of surgeries. It was what could remain after them.
Urgency — the symptom I had come to despise — often persists even with a J-pouch. Frequent bowel movements, nighttime trips to the bathroom, and the risk of accidents are common. For someone whose life had already been shaped by urgency for decades, that reality mattered.
The thought of going through multiple major surgeries only to keep the very symptom that had stolen so much from me was difficult to accept.
The second option — a total proctocolectomy with end ileostomy — removes the colon and rectum and brings the end of the small intestine through the abdominal wall to form a stoma. Waste exits the body through that opening and is collected in an external pouch.
Bowel movements as I had known them would no longer be possible.
The drawbacks were obvious: wearing a bag, caring for a stoma, navigating body image concerns, learning an entirely new way of living.
And yet, as I listened, something unexpected happened.
I realized I could learn to manage a stoma.
I could adapt to a bag.
I could live with that.
What I couldn’t live with anymore was urgency — the constant fear of not making it in time, the calculations, the exits, the accidents.
Unlike a J-pouch, an end ileostomy offered something I hadn’t felt in years: predictability.
I left that first surgical consultation feeling relieved and cautiously hopeful. Surgery still felt hypothetical. I was optimistic that Zeposia might work and allow me to avoid it altogether.
I even booked a trip to Perú for late April — my fortieth high school reunion — and let myself imagine a brief escape.
For the moment, the decision remained suspended. The options were clearer and the risks were understood.
I still believed — quietly — that medication might save me from having to choose.
This post reflects personal experience. A medical disclaimer is available on the About page.