In September 2007 I was diagnosed with Ulcerative Colitis (UC) after just 2 weeks of being very unwell. I had gone to A&E and was promptly seen, hooked up to an IV due to dehydration and whisked away for a colonoscopy. My entire colon was full of ulcers, so I was immediately admitted for IV hydrocortisone. A week later I had emergency surgery to remove my colon.
I was someone who was never sick, so being admitted to hospital, tests, surgeries, sepsis, ileus, NG tubes, being drip fed and needing a Physiotherapist to help me walk again had been pretty traumatising. I was only 19 and up to that point my life had very much revolved around me having a good time, and the only thing I’d had to worry about was a few spots on my face.
I hadn’t had time to process what having Ulcerative Colitis really meant. I had been given an information booklet when I was admitted to the hospital, but it had led me to believe that it was simply a case of finding the correct medication, then all would be well. The next thing I knew, I was colon-free and living with a stoma – another thing I’d never heard of before.
I didn’t deal with life with a stoma very well. Constant leaks and burnt skin impacted my mental health, and other than work, I didn’t really leave the house anymore. My normal clothes had been replaced with jogging bottoms and boys’ T-shirts, in an attempt to cover up the bag.
Trying out a J-Pouch
When I attended my first follow-up appointment with the surgeon, I only had one question. “When can I have this reversed?” You see before the surgery to remove my colon, I had been told that removing it would cure my UC, and that the stoma was temporary and could be removed when my health had improved.
The surgeon explained the Jpouch procedure to me; my small intestine would be used to create a pouch which would be attached to my anus and would essentially serve the purpose that my rectum had had before it was removed – to store faeces. He urged me to wait until I had started a family if that was on my list of things to do, due to the effect that the Jpouch creation would have on my fertility. I went away and thought about it, but because I was having such a hard time and I hated the bag so much, I went ahead and had the Jpouch built a year after the initial surgery. I still hated life with a stoma, but the end was in sight, and that was what I had clung onto to keep myself sane. A year later, in 2009, the pouch was connected up, and I was finally bag free again!
It wasn’t long until my first Pouchitis flare. It wasn’t as bad as my initial UC flare had been, but it was painful, tiring and meant I couldn’t go far from the toilet. Antibiotics (the standard Pouchitis treatment) didn’t do anything for me, but Prednisone had helped. I spent the first few years of Jpouch life on and off the steroids, struggling with the side effects of insomnia, acne, greasy hair, mood swings and a big round head. Eventually though, I reached a point where I couldn’t wean off the steroids without a flare returning, so I had to try new medications. I had a period of remission which lasted 10 months, which was the longest I had gone without a flare for years, but new symptoms emerged during that remission period, causing pain further up in my small intestine. A stricture was identified during a flexi sigmoidoscopy and my consultant advised me to think about having my Jpouch removed, but I wasn’t willing to do that so I asked for a second opinion. My mind-set was that I would rather end my life than go back to life with a bag. The memories of that initial period with a stoma engulfed me and I was filled with fear. My consultant referred me to a different hospital where she thought they may be able to dilate the stricture.
Starting my blog
It was during this time, in 2014, that my frustration had led me to raising awareness online. I was angry that there was so little understanding of my disease, and that people assumed I was well because I didn’t “look” sick and managed to go to work every day. That was a case of necessity, to keep a roof over my head, and nothing more. I had a job in social media marketing, which I had started on an apprenticeship, so my knowledge of social media had helped in my awareness raising mission. I started a blog which has continuously grown in popularity.
This led to me meeting people online who had IBD and stomas, and they were getting on with life, even loving it, because of their bags. What had started as a need to raise awareness had become so much more. It had become a support system, a place of inspiration that I could draw strength from. I loved it and my mental health improved drastically. I created a Facebook support group and was online at all hours, giving advice, listening, sharing stories, fundraising and raising awareness. I felt like I had found my purpose in life.
The new hospital was very quick to see me, and then also very quick to get me in for tests. A few days after a barium enema X-ray the surgeon called, and I still remember his words to this day. “As you know, we were looking into whether we could dilate your strictures and the answer is no. You have two, and one is long and very narrow and the other is short and very narrow, situated just a few centimetres apart. We need to get you in for surgery urgently. I can book you in for next week.”
My mind couldn’t quite grasp what he was saying. I agreed to the surgery because it didn’t seem like there was another option, so in just 5 days I was going to be having another operation, which was something that hadn’t even been on my radar to be thinking about.
I was marked up on both sides of my stomach for a stoma, just in case. When they got in there, they found that my intestine was in fact twisted, and the smaller stricture was an abscess. I woke up with a stoma again, and my initial thought had still been negative, but then I remembered the wonderful online community and calmed myself. My first question to the surgeon was still “Is this permanent?” He told me it wasn’t and so I breathed a sigh of relief.
Recovery went smoothly, apart from the post op ileus, but I had expected that based on all previous surgeries anyway. Not being in pain constantly was pretty overwhelming. I’d been living in a painkiller haze for so long that being free from it felt weird at first. This stoma was so much better than the one I’d had originally. There were a few leaks, but nothing like what I’d been dealing with before. I stuck with my awareness raising and flashed my bag around online, and I felt really positive about life. I felt so positive in fact, that after just 5 months, when the surgeon called and offered me a reversal surgery date, I was in two minds about whether to go ahead!
I decided to give it a go and see what happened, but I was confident now that if the time came when I needed a stoma on a permanent basis, which I assumed that I would, I would be OK.
I continued my fundraising and awareness work online, which led to me winning ITV Central’s Fundraiser of the Year 2015 Pride of Britain award. I was invited to join the board by the charity I was fundraising for, Cure Crohn’s Colitis, and of course, I snapped their hand off!
The light at the end of the tunnel
As suspected, Pouchitis wasn’t far away. My IBD team made me go through all of the medications that hadn’t worked in the past; Metronidazole, Ciprofloxacin, VSL#3, Budesonide and Azathioprine. I was still experiencing daily pain and discomfort, urgent and frequent toilet trips which often included passing blood, and a flexi sigmoidoscopy confirmed my J-pouch was full of ulcers. I tried Infliximab, but symptoms remained, so the decision was made to remove my J-pouch in favour of a permanent stoma.
It was my light at the end of the tunnel! How weird that the same person that had been so against having a stoma again in the past, was so keen on it now?!
I had to wait to be referred back to the surgeon that had done my last two surgeries, and then wait for the appointments and surgery date, so I used that time to prepare myself for what was ahead. I signed up to multiple ostomy newsletters and read many online resources, and I ordered samples of stoma supplies and generally looked forward to what was to come. My life had been on hold, like someone had literally pressed pause, and there were many things I felt I needed to do to improve my life, but I just didn’t have the energy or strength. I wanted a new job and to move house, but it all seemed so far away, and the surgery to remove my J-pouch and sew up my butt signified the beginning of being able to get back on track!
October 18th 2018, the surgery finally happened! Recovery felt long and slow, but eventually I started gaining weight and strength, and then it was Christmas! I was able to enjoy a Christmas dinner with all the trimmings and I even went on a night out!
My stoma has been great, and I’ve been impressed by the ostomy supplies available, which have improved drastically in the last 4 years, both aesthetically and in terms of adhesion. I haven’t had one leak, and I am pleased to report that this time, I have not thrown all my clothes away either! High waisted jeans keep everything in place, and in all honesty, I am not really fussed if people do see my bag through my clothes on occasion. It is what it is, and it’s who I am. Everyone around me knows I have got it, and they have noticed improvements in my mood since surgery. Weirdly, it feels more normal for me to have a stoma than to not have one. I fell straight back into my routine with it and haven’t looked back.
I have been near death more times than I care to remember and life has been difficult to keep pushing through during the last 11 years, but I am so glad I did keep pushing!
I am in a really good place at the moment. Since surgery I have got a new day job, which has helped my mental health a lot, and exciting things have been happening for me in the IBD and stoma community too. I have been recruited by Merakoi as an IBD Patient Expert, so I am working with a Pharma company to map the patient journey and identify any unmet needs, so that we can co-create resources to meet them. I have also signed a contract to write for Health Union on InflammatoryBowelDisease.net, which is super exciting for me! I am still working on awareness raising and support via #IBDSuperHeroes and my blog, and I’m enjoying supporting Cure Crohn’s Colitis with their digital marketing and comms.
I came across Trio on Twitter. As an active member of the IBD and ostomy community, I like to stay up to date with all manufacturers and suppliers of stoma products, so I regularly search for tweets and new twitter users!
I really like the Trio products, and I also like the fact that they call to see how you’ve got on with the samples they’ve sent. They’re so friendly and chatty, it doesn’t really feel like a sample follow up at all! You could almost be fooled into believing you’re friends!
To the Trio team, THANK YOU!