For anyone living with ulcerative colitis, the thought of surgery can feel like the last resort — and one of the toughest decisions you’ll ever face.
For me, deciding to go ahead with surgery was without doubt the hardest choice of my life. It wasn’t a quick or simple decision. I lived with UC for more than 13 years, trying every medication possible. Deep down, I was desperate to avoid surgery, clinging to the hope that something would eventually work.
But over time, the treatments stopped being effective. I began flaring more and more often, and before long my whole world was consumed by ulcerative colitis. Life revolved around managing symptoms, and I was running out of options.
Existing, Not Living
Over time, all my days began to blur into one. I would wake up, drag myself to work, come home completely exhausted, and collapse into bed early. The next day, the cycle repeated itself — work, home, bed, repeat.
Weekends weren’t much different. Instead of enjoying time with family and friends, I spent them recharging my batteries, trying to recover enough energy just to face another week.
Looking back, I can see that I wasn’t really living at all — I was just existing. My life was consumed by ulcerative colitis, and every choice I made revolved around it.
Despite this, I still resisted surgery. My doctor urged me to seriously consider it, but I kept pushing her advice away. I couldn’t face the thought of life with a stoma. The fears were endless — fear of what it would mean, fear of how I would look, fear of how I would cope. A mix of vanity, anxiety, and uncertainty kept me holding on longer than I probably should have.
Fearing the “One-Way Ticket”
One of the strangest thoughts I had while debating surgery was this: once your colon is removed, that’s it — it’s gone forever. Surgery for ulcerative colitis felt like a one-way ticket with no return journey.
I remember lying awake at night thinking, “What if I have the surgery, they remove my colon, and then the very next month they find a cure for ulcerative colitis? How would I live with that?”
Looking back now, after 15½ years living with a J-pouch and a year with a stoma before that, it seems like such an odd worry. I’m now 16½ years post-UC surgery and there still hasn’t been any announcement of a cure for ulcerative colitis. But at the time, the fear was real. That “what if” played on repeat in my head. Surgery felt final and irreversible — and that terrified me.
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The Moment Everything Changed
So what made me finally change my mind after years of resisting surgery? It all came down to one moment — my last colonoscopy.
During the procedure, my gastroenterologist leaned over and said something I’ll never forget: “Your colon is completely diseased. This is looking really bad. If we don’t take action, I’ll probably be seeing you back here in three to six months to tell you that you’ve got bowel cancer.”
That message landed like a hammer blow. Oddly enough, what felt like devastating, frightening news was also a strange kind of blessing. It made the decision for me.
Yes, the fear of surgery was still there. The anxiety about living with a stoma was still very real. All of the things that had held me back for so long hadn’t disappeared. But in that moment, they were completely eclipsed by something bigger — the reality that without surgery, my risk of bowel cancer was high, and my time could be short.
In the end, the answer to the question “Why did I choose surgery to treat my ulcerative colitis?” is incredibly simple: I wanted to live.
Overcoming Body Image Fears
One of my biggest worries before surgery was body image. I questioned whether anyone would ever want to be with someone like me after ulcerative colitis surgery. Would I feel confident? Would I ever feel attractive again?
The reality turned out to be very different from the fears. Since having the surgery, I met a girl, we got engaged, and she’s now been my wife for the last 13 years. Together, we’ve had three children. All those anxieties I carried for so long never came true.
In fact, surgery became a turning point. It allowed me to move forward, rebuild my confidence, and truly start living my life again. (I’ve shared more about this in a dedicated post on body image and intimacy after IBD surgery).
Looking Back — From Fear to Freedom
In the end, the decision was made for me. Looking back now, I don’t think I fully realised just how much of my life I had put on hold because of UC. When you’re living with ulcerative colitis day to day, it’s easy to miss the bigger picture. I was so focused on avoiding surgery that I couldn’t see how much of my life the disease had quietly taken away.
I had fallen into a habit of simply existing, not truly living.
Now, all these years later, I can say with certainty that choosing surgery was one of the best decisions I’ve ever made. Yes, it was frightening. Yes, there were unknowns, challenges, and a steep learning curve. But the person I became on the other side of it all is far healthier, far happier, and no longer weighed down by the constant anxieties that once held me back.
For me, surgery for ulcerative colitis wasn’t the end — it was the start of finally getting my life back.
A Final Word to Anyone Facing Surgery
If you’re reading this because you’re facing the same decision I once had to make — whether to live with a stoma, to have your colon removed, or to take that “one-way ticket” surgery option because of ulcerative colitis, Crohn’s, or another disease — please know this: you are not alone.
I’ve been where you are. I know how heavy the decision feels. Everyone’s journey is unique, and the outcomes can vary, but looking back more than 15 years later, I can honestly say that having surgery was one of the best decisions of my life.
If you’re standing at that crossroads now, it may just turn out that years from today, you’ll look back and feel the same way.
To learn about all the steps in the surgery journey take a look at the J Ladder which maps out my pathway from UC to J Pouch visually.
I truly send my heartfelt thoughts to anyone going through this stage of life with IBD. If you’d like more support, there are many patient communities and resources available — and you may also find value in reading other people’s stories about living with a J-pouch or life after stoma surgery.
Most importantly, remember: you’re not alone in this journey.
To watch the video version of the post please see the video below. For more videos from Pouch Heals on similar topics take a look at the Pouch Heals YouTube channel HERE