Start here: introducing the J Ladder
Facing ulcerative colitis and weighing surgery—or even a future J-pouch? You’re not alone. In this post (and the companion video), I walk through the exact steps I took: from living with UC, to stoma surgery, and later to a J-pouch.
I’ve mapped those milestones into a simple framework I call the J Ladder—a clear set of rungs many of us will climb on this journey. It won’t match every path exactly, but it gives you a map, language for better conversations with your care team, and a way to feel less in the dark.
Step One: Living With Ulcerative Colitis and Medication
The first rung on my J Ladder was life with ulcerative colitis just after being diagnosed. I was put straight onto medication, and for a while it felt like things were starting to settle. The tablets calmed everything down, and I thought maybe this was it—that I’d found my answer.
I stayed on this step for about six months. In that time, I managed reasonably well and even began to believe I was improving. But then I had my first major flare-up. That was the moment things changed, and it pushed me onto the next step of the ladder.
Step Two: Medication Not Working
The second rung on my J Ladder was the longest and, in many ways, the hardest. This was the period where I had to face the reality that medication alone wasn’t going to be enough to hold my ulcerative colitis.
After about six months on treatment, I had my first major flare-up. That flare landed me in hospital—and from that point forward, I entered a cycle I couldn’t break. Recovery, then illness. Another flare-up, another hospital stay. Over and over again.
With each repeat of that cycle, the medicines became less and less effective. I went through them all—anti-inflammatories, steroids, and eventually immunosuppressants. Each time, they would give me a glimpse of stability before the UC broke through again.
When I say I spent the longest on this step, I really mean it. I stayed here for years—about 13 in total. Looking back, it was a grind that wore me down physically and mentally. Eventually, though, my body made the decision for me. It forced me to climb to the next step on the ladder.
Step Three: Surgery and Stoma
Step three on my J Ladder was the first to involve surgery. The medical term is a total colectomy with end ileostomy. In simple terms, it means the colon is removed and you’re left with a stoma. This step is one-way—once your colon is gone, there’s no going back.
For anyone living with inflammatory bowel disease, whether ulcerative colitis or Crohn’s disease, this is a huge decision. It was for me too.
I won’t sugar-coat it—mentally, I wasn’t as prepared as I should have been. The first time I saw my stoma, it broke me down to tears. The shock of it, the finality of it, was overwhelming. But slowly, I learned how to live with it.
And as the days and weeks went on, something unexpected happened: I began to feel relief. For the first time in years, I wasn’t living under the constant threat of UC symptoms, flare-ups, or hospital admissions. I could start to rebuild a life without that shadow over me.
At the time, I couldn’t decide whether I wanted to take things further and eventually move on to a J-pouch, or stop there. The thought of more surgeries felt like too much to handle all at once. So I pressed pause, gave myself time, and kept all the options on the table.
Step Four: Loop Stoma and J Pouch Formation
Step four for me was the moment my J-pouch was actually created. I reached this point several months after my colectomy, only once I was absolutely sure that pursuing a J-pouch was the right option for me.
In this stage, the pouch is built but not yet connected to the digestive system. Instead, surgeons create what’s called a loop ileostomy, which diverts waste away from the pouch. This allows the J-pouch to heal in a clean environment without being strained by daily use.
The operation itself involves a lot of delicate stitching, so giving the pouch time to rest and recover is vital. That healing window made all the difference—it gave the new pouch the best chance of working well when it was finally time to connect it.
Want to dive deeper into what living with ulcerative colitis really feels like?
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Find out more HERE
Step Five: Stoma Takedown Live J Pouch
The final surgical step on my J Ladder was the takedown surgery. This is when the loop ileostomy is closed and the J-pouch is fully connected to the digestive tract. For the first time, the pouch is introduced to processed waste—it effectively “comes alive.”
Going into this surgery was a mix of emotions. I was apprehensive about the recovery, but the thought of waking up without a stoma filled me with a sense of hope and excitement. It felt like a major turning point in the journey.
The weeks and months after takedown, however, are some of the toughest. A J-pouch isn’t a naturally formed organ—it’s something surgeons create—so your body doesn’t immediately know how to work with it. Those early days are all about training the pouch.
That meant:
- Holding on a little longer before rushing to the toilet, to stretch the pouch gradually
- Trying foods slowly, and seeing how the pouch reacted
- Building new routines, even when sleep was disrupted or urgency was high
It’s a demanding process, but over time the pouch adapts. Things improve step by step, and while the J-pouch will never function exactly like a colon, it does learn—and so do you.
For me, takedown was both a challenge and a milestone. It was the start of life with a pouch, and the beginning of finding a new kind of normal.
👉 I’ve actually made a full video about my first weeks of J-pouch recovery, so if you’re interested in the details of what that looks like day to day, you can check that out here.
Step Six: Living With a J-Pouch
And that brings us to the very top of the J Ladder: living with a J-pouch. This is where I am now—and I’ve been here for about 15 and a half years.
Over that time, I’ve discovered countless tips and tricks that have made life with a pouch far better than I ever imagined. That’s why I share my experience here on the blog and on my YouTube channel—because I know how valuable real, lived experience can be when you’re just starting out.
In these 15+ years, I’ve rebuilt my life. I got married, had three children, travelled, and regained so much of what ulcerative colitis once took away. Looking back, I realise I resisted surgery for a long time because I thought it would be the end. The truth is, it was the beginning.
Surgery opened a new chapter. It lifted the weight of UC and gave me the chance to live without the constant anchor of illness. The J-pouch isn’t perfect—it never will be a colon—but it has allowed me to move forward and build a full, meaningful life.
So that’s the J Ladder: from diagnosis, to medicines, to surgery, and finally to long-term life with a J-pouch.
👉 If you’re somewhere on this ladder yourself, my hope is that seeing the whole picture helps you feel prepared and a little less alone.
Final Thoughts
If walking through my J Ladder has helped you, I’d love for you to stick around here on the blog. I share practical tips, lessons learned, and honest experiences of life with a J-pouch and inflammatory bowel disease.
You can also join the Pouch Heals community by following along on:
- YouTube – video guides and stories
- Instagram – day-to-day insights
- Facebook – conversations and support
And if you’re ready to keep climbing, don’t stop here—check out another post on Pouch Heals that can help you take your next step.
To watch the video explanation of the J Ladder please watch the video below: