I feel really lucky for lots of things along my stoma journey that it might seem a little odd to be thankful for, and the first of those is that I got really sick, really quickly.
My diagnosis
I’m grateful that I didn’t have months, or even years as some people do, struggling to be taken seriously or to get a diagnosis. I did have a couple of visits to the GP in July of 2019 where I was fobbed off with suggestions of hemorrhoids despite the fairly dramatic blood loss I was experiencing, but by the middle of August that year, I found myself in A&E and things moved fast.
The very first A&E doctor I saw told me he suspected ulcerative colitis (UC), which I had never heard of before that day. I was admitted and tested and given the confirmation within a few days and sent home with the first of what turned out to be many courses of prednisolone, a steroid tablet that initially helped get my symptoms under control.
Stoma surgery and COVID
I’m grateful that I was at my worst and had my surgery during COVID. I appreciate that seems strange and maybe if my experience had been at a different time, I would feel differently, but it felt helpful at the time.
When my symptoms were at their worst, I was going to the toilet, mostly to pass blood, between 25 and 30 times a day. I had very little control and extreme urgency. I simply could not have worked in the office, but I did manage to carry on working because COVID was forcing us all to work at home. It look a lot of the stress of the situation away for me.
I tried several medicines trying to find one that would work for me but unfortunately, none of them did. Alongside a variety of different tablets, I tried medicines I had to inject into my thigh and biologic infusions that were administered in the hospital over a few hours every 2 weeks. Eventually I ran out of options. I was still in a flare and by this time I was very poorly.
In February 2021, during the latest of several hospital admissions, I was told I needed emergency ileostomy surgery to keep me alive. I was so unwell that I was quite grateful that, thanks to COVID, nobody could visit me. I just didn’t have the energy for it. I was relieved, but also initially quite upset, to have my stoma. Psychologically, I found it very difficult to get used to eating again. The stoma created a much more direct link between what was going in, and what came back out again! It just made food quite unappealing. Physically though, the recovery was ok. My stoma behaved itself and I’ve rarely had any leaks or other issues with it. I was back to work just a few weeks later.
The main problem I had was that I’d had proctitis, meaning that the most damaged part of my colon was the bit closest to my rectum, which did not get removed in the surgery. As a result, I was still getting lots of the blood loss and urgency from my bottom, so still struggling with the symptoms I thought the surgery would solve.
Barbie butt surgery
I’m grateful that long waiting lists meant my second surgery, to remove my rectum and make my stoma permanent, took about 18 months longer than it should have. I needed that time to adjust to life with a stoma and to decide what to do next.
Unlike the first surgery, which I had no choice about, this time I had to make a decision on whether I wanted to reverse my stoma, or have Barbie butt surgery, which meant having my rectum removed and making my stoma permanent. After several changes of heart, I opted for the Barbie butt, and I’m still confident that was the right choice for me.
In June 2023, I had my rectum removed and stitched up, hence the Barbie butt nickname, given to completion proctectomy surgery. Within a week, the wound had opened up and I had to have more surgery to have a PICO unit (a funny, little robot pump) fitted to drain from the wound. Over the next few weeks I had lots of hospital visits and several septic infections, and it eventually took 11 months for my wound to heal. Every day for that 11 months I had to visit a nurse to have my wound packed and dressed. It was exhausting and restrictive, but I am so grateful to those nurses who became a very important part of my life over that time. It was also those nurses who had a stern word with me about work. 10 months into the wound healing they told me I needed to take time off to see if it would help the healing. I took 3 weeks off and it healed by 70% in that time. It was a real lesson in the way our bodies carry things we may not be conscious of.
Getting strong with a stoma
Finally, I’m grateful that having a stoma is allowing me to live my life with very few restrictions and has led me to new friendships!
My stoma gives me control I didn’t have before. It’s taken a while to feel fully recovered, but now I am moving into a new phase of building my strength and fitness, which is doing wonders for me psychologically too, in building back confidence in my body. In January, I set up my Instagram page, @gettingstrongwithastoma, mostly to track my progress and keep myself accountable. I have joined an amazingly supportive gym where the coaches are brilliant at helping me to adapt and work around my stoma, and the members are all brilliant cheerleaders for each other. It’s a real community and I’m feeling more capable all the time.
Sharing my journey through Instagram has brought benefits I wasn’t expecting at all. The ostomate community is incredible! I have had so much support from people I’ve met through it, and Rachel, another ambassador for Eakin Healthcare and Respond, has become a real friend over the last few months. After just a few weeks I was invited to join their Beyond the Pouch podcast. It was great fun but also gave me something I hadn’t realised I needed, the opportunity to talk to people who really understood from first-hand experience.
Now, as I join Eakin Healthcare and Respond as an ambassador, I am excited to meet more of my fellow ostomates and be part of this amazing community of people supporting one another.
