Before my ulcerative colitis diagnosis, I took my health for granted. Why wouldn’t I? It had never let me down before. I’d never experienced anything more severe than a cold.
A new perspective on physical activity
My diagnosis and subsequent surgeries forced me to reevaluate my life. It’s amazing how much physical activity we engage in daily without realising it. As a child, I was full of energy, dabbling in everything from ballet and gymnastics to horse riding and synchronized swimming. In my teens and early adulthood, nights out with friends and hours of dancing only resulted in sore feet from high heels. As I transitioned into a “proper” adult, routine activities like housework, shopping, and walking to work were second nature.
The first time I fell ill, everything happened so quickly. From initial symptoms to surgery, it was just three weeks! Suddenly, I found myself in a hospital bed, unable to sit up on my own. I remember the day two physiotherapists arrived at my bedside and announced, “We’ve come to help you get up and about.”
A harsh realisation
I must have looked at them like they were from another planet. I was convinced they had the wrong patient. I told them so. They insisted, and I was annoyed, thinking how ridiculous it was and determined to prove them wrong. They helped me to the edge of the bed, took an arm each, and encouraged me to stand. I couldn’t.
In my mind, I believed I had been getting up and moving around, going to the toilet and things, like I did when I first arrived at the hospital. It hadn’t dawned on me that since my surgeries (one to remove my colon and another to clean out an abdominal infection), I hadn’t got out of bed. My stoma hadn’t functioned for a week due to post-op ileus. Once it started working, nurses emptied my bag during rounds. Initially, they did it for me, then provided a cardboard hat for me to use. I hadn’t needed to pee because I had a catheter in. Mornings began with a bowl of water for washing… You get the picture.
The road to recovery
Realising my legs had lost all muscle was mortifying. That recovery was the slowest and scariest I’ve ever experienced. I was terrified of pushing myself too hard. Yet, it was also the most rewarding recovery, filled with moments of pride each time I accomplished something new on my own: bathing, climbing stairs, changing the bed.
Subsequent surgeries were easier because I knew what to expect. That doesn’t mean I didn’t get upset or frustrated, especially when it felt like progress was two steps forward and one step back. But I always knew I would get there in the end. After that first surgery, I’d doubted I would.
Learning from mistakes
Despite having gone through six previous surgeries, I still made mistakes with the physical recovery of my most recent one. I ensured I walked around and gradually increased the length of my walks. However, one area of my abdomen constantly felt sore, leading me to avoid using certain muscles. Instead, I relied on my arms to push and pull myself up. It wasn’t until I injured my back and saw a physiotherapist that I learned this was due to neglecting those muscles. Doh!
Starting from Scratch
A whole year after ostomy surgery, I had to start from scratch. I had to rebuild my core, abdomen, and lower back strength very slowly. I began with gentle yoga, gradually stretching the area and increasing the intensity over time. When I finally started using those muscles, I wore a custom hernia prevention belt from CUI Wear for extra support. I still use the same belt today when I do core-focused exercises!
Now, I walk the dogs and do yoga daily, but I’m still working on increasing my strength and stamina. It’s unfortunate that exercise isn’t more thoroughly addressed before and after surgery by healthcare teams for most of us.
The community’s experience
When I asked the community about their experiences, many had returned to their usual activities but received no advice from hospital stoma nurses or specialists. It’s simply unacceptable! While many resumed swimming, cycling, and even weight training, a number remained wary of abdominal exercises. They believed they could result in a hernia, when in reality, the best thing you can do to prevent a hernia is get those muscles working to hold everything in place! Most people found useful tips came from other ostomates, which is great, but sometimes you need professional guidance. Not everyone has access to online support, and poor advice can be harmful. Those who saw a physiotherapist often had to pay privately.
Resources for recovery
I would encourage anyone who is going to have or has already had, abdominal surgery to ask their medical team for advice. If you don’t get much from them, see a physio. In my area, physiotherapy services are accessed via self-referral, and the waiting list isn’t that long. Other resources are available online, and I will link a few below to get you started.
NHS Royal Devon – Physiotherapy advice after abdominal surgery
Fittleworth Medical – Simple Steps
Patient Advocacy 