Campaigns and awareness Case studies Rachel: I’m Rachel with two stomas – let’s rock it! My story begins when I was 20 and in my third year at University. I contracted campylobacteriosis from cooked chicken bought at a supermarket. Little did I know that it would trigger a chain reaction of multiple organ failures and from that day onwards my life would never be the same. Six months after the initial food poisoning incident I began to have severe and frequent urinary tract infections (UTIs). I was given multiple antibiotics but the symptoms kept returning. One day I was unable to empty my bladder fully and was in severe pain. The hospital urologist team decided that I needed to start Interstitial Self-Catheterisation (ISC). Well, that was an adventure! To say I struggled was an understatement. Twelve times a day I had to do battle with the toilet seat and mirror to get myself into the right position to catheterise. At the same time I was trying to hold down a job as a therapy radiographer and still suffering pain, retention and clamping. After several weeks the urology team decided it was time for a urethral catheter. Looking back I cannot believe I still tried to work and run around with this bag attached to my leg. I did opt to give up my job in the end - which was a tough decision. I had worked so hard to get where I was and it all seemed to disappear in the blink of an eye. Nevertheless, it was the right decision because things then started to get even worse. For some reason my body did not like the urethral catheter. I ended up in A&E every two to three months with catheter-induced infections and horrendous pain. I was unable to do anything - which affected me physically, mentally and spiritually. In 2010 I finally had a Supra-Pubic Catheter (SPC) which was much easier to cope with and the pain was much reduced. While all these bladder problems were going on, however, my bowel started to malfunction. It began with severe constipation which was treated with laxatives, barium enemas and the Peristeen Irrigation System (similar to a colonic irrigation). At this point I was very thin, malnourished and in horrific pain because I could not eat, and still I had no explanation for what was happening to me or why. Eventually in 2012, aged 26, I had an emergency operation to form a permanent ileostomy which surgeons said saved my life. This was Stoma Number One. I decided to give it a name - and ‘Bob the Knob’ was born. A neurologist got involved and, after lots of weird and wonderful tests, I was diagnosed with autonomic neuropathy (dysautonomia), similar at autonomic failure. The relief I felt on hearing that all this wasn’t in my head and that there was a reason that my organs were failing was indescribable. But the bad news was that there is no cure. In 2014 I moved to Bournemouth where I have had wonderful hospital care. It was here I started suffering from pain, bleeding and discomfort because my bladder was so small and because I’d had a catheter for seven years. In 2015, routine surgery (cystoscopy) showed that my bladder was not only small and damaged but the cells had mutated and it had to be removed. The surgery (a urostomy) took place within weeks and along came Stoma Number Two. I named this stoma ‘Squirt’ – a brother for Bob the Knob. The next year was extremely difficult. I was hospitalised for roughly seven months on separate occasions. For two years after that I experienced a 6-8 inch bowel prolapse outside my stoma - one of the most distressing things I have dealt with – and needed seven operations to re-fashion it. I now suffer continuously from spells of septicaemia (sepsis) and have to be very vigilant for symptoms. The years of illness make me feel like I have achieved a degree, Master’s and a PhD in being ill. But the trials and tribulations of having a chronic illness and two stoma bags mean that I have a story to tell, and if my story can help just one person to identify and feel they are not alone, then I will have done my job. In January 2017 I launched my blog: Rocking2Stomas by spreading my story and bearing all I hoped to inspire, empower and support fellow ostomates to do the same and ROCK IT. I was inundated with emails from people who felt alone. Together we can strive to actively promote the awareness of urostomies and double ostomates and achieve the same amount of recognition that colostomies and ileostomies have. I have accepted that my two stomas are a part of me. I use a crutch to get about, but hope to get rid of that soon. I swim in the sea with my two bags tucked into by bikini bottom. I have posed for pictures in underwear, showing my bags. I can’t have children, but I’m an aunty to lots. I’ve set up a support group of ‘double-baggers’ which now has more than 300 members worldwide. I do a lot of public speaking about stomas. I feel blessed that I have both an ileostomy (Bob) and a urostomy (Squirt). I have learned so much about myself and have been surprised by how much I have been able to cope with. Having Bob and Squirt is like having two demanding children. They have taught me patience, perseverance and acceptance. At the end of the day they have saved my life and I would not be here, or the person I am today, without them. A few years ago, I was a shell. I’d lost my voice. I am now passionate about spreading the awareness message about urostomies – both inside the medical profession and outside. It has taken me a while to reach this stage but it won’t hold me back. I am embracing it and having a go. I’m just Rachel with two ostomies.