I was diagnosed with Inflammatory Bowel Disease in the form of Ulcerative Colitis (UC) in 2001 and over the course of 12 years was immune suppressed with long periods in remission. The most notable relapse followed a serious infection, which almost cost me my life. The treatment for the infection was sudden and harsh and my bowel reacted by becoming severely diseased almost overnight. I lost a year to steroids and a slow recovery, unable to work much of the time and later on a miscarriage, which was a huge personal loss.
I went on to have a couple of years of good health, a relatively minor relapse in 2007 then I remained well (when I say well I mean well by the standards of someone with bowel disease). In 2014 my bowel was scoped and found to be in complete remission with no scarring or signs of bowel disease. It was decided that I would be withdrawn from the immune suppression medication in December 2014. I was ecstatic!
During 2015 life started to get uncomfortable again, I was experiencing various inexplicable symptoms and in the Summer was diagnosed with Endometriosis. There was talk of a hysterectomy, which felt like a massive and unacceptable leap at that time. I went with a Mirena Coil and found this managed the symptoms pretty well at that time. Soon after I started to experience issues with my bowel and by the October I wasn’t feeling good at all. Looking back I was in denial about it and pressed on. Life was busy and work was very stressful. I was managing a project and felt very much that there was no-one else to pass it to, so I carried on. By the Christmas work matters had reached something of a conclusion and I think my body knew it. Christmas Day I was very unwell and life as I knew it stopped that day.
My bowel was badly diseased again, I was in pain, losing blood, spending hours a day in the bathroom. It’s amazing how much we can kid ourselves we’re ok. I certainly did. I was convinced that I’d get checked out by my doc, have a course of steroids and be just fine once they’d kicked in. I even talked myself into thinking this wasn’t a flare, I must just have a bad stomach infection. Not so. Tests showed early January 2016 that I was having a very severe flare of UC, with my inflammation markers off the scale. I think this was the first time I started to get an inkling this wasn’t going to follow the expected outcome and I had the first conversation with my consultant about surgery. It wasn’t a serious one, I like to have all the options in front of me and it felt premature at this stage.
I could go on endlessly about what happened next and over the following months. The short version is I went on to be unwell for the whole of 2016, each drug failing. Life was miserable, an existence of trips to medical appointments, generally feeling rubbish and unable to plan ahead for anything. I had times when I felt good and managed to return to work part time for a few months, steroids giving me a gift of wellness. I knew this was temporary, which was reinforced by a severe relapse when brought off steroids whilst trying out a new drug. The thought started to enter my head that I may not actually have a life ahead of me.
I was told by specialists that it was inevitable that I would need surgery one day and that it was a matter of when, not if, I developed bowel cancer. Eventually, with the support of my family and consultant, I decided to have surgery. That time was not easy, I cried a lot and felt a lot of anger. I felt stuck, backed into a corner. I didn’t really have a choice, surgery was the only way forward if I wanted a chance to have a life again. Eventually I made the decision to have surgery with my head, hoping my heart would catch up.
In October 2016 I had my colon removed and an ileostomy formed. There is nothing that could have prepared me for what that meant yet I feel I was as prepared as anyone could be. Unlike many others in my situation at least I knew it was happening and had some time to prepare mentally.
Having an ileostomy doesn’t define me but the surgery has been life changing at every level. There isn’t a single aspect of my life that hasn’t been impacted by it and today I’m rebuilding and discovering a new life bit by bit. It’s not easy and is full of challenges, but I’ve always liked a challenge. Recovery is slow and I’m not a patient patient so it’s not always easy. I have a range of legacy health issues which I manage and as my Dad said, a problem managed is no longer a problem 🙂 I’m currently experiencing a range of other issues, which combined are challenging me all over again. I had a moment this week where I started to think that my body had given up and my future started to look in doubt all over again. So I had a few rest days and have rooted out my inner fierce again and we’re all good.
I don’t regret having the surgery, not in the slightest. My ostomy is a gift, it’s given me life. Without it I would still be living the groundhog day life of temporary health courtesy of steroids, relapsing each time I came off, further pressure put on my body and other organs and with each relapse getting progressively sicker. Instead the bit of my body that was slowly killing me is gone and I have the opportunity to reinvent myself and have a life. I accept that gift wholeheartedly!
Today, I’m 5 months on and there will be aspects of life that return and there have also been and will continue to be new things to discover.
Welcome to my journey of wellness, discovery and reinvention!