Ulcerative colitis has no known cause but steroids help, says EMMA O'BRIEN-HARKIN
IN 2000, specialists at the Alfred Hospital in Melbourne confirmed I had developed ulcerative colitis (UC). I was 27 and enjoying Australia. I had secured a job transfer from London, was renewing my love of the outdoors, playing Gaelic football and starting a new fad high-protein diet. Naively, I didn’t believe the experts. This bleeding was a one-off that would go away when I started looking after myself, I thought. I took the medication and things improved.
I could remember feeling sorry for two old flatmates – one had UC and another had Crohn’s disease – and did some research. UC is an inflammatory bowel disease of unknown cause characterised by ulcers forming on the wall of the large bowel and rectum. Poor nutritional absorption, prolonged flare-ups of cramping pain, fever and bloody diarrhoea develop and are managed by drug therapy.
Unlike Crohn’s disease, which can affect the whole digestive tract, UC is confined to the large bowel and rectum so, when this is removed, so is the disease.
I returned home in the grip of the mother of all flare-ups with many of UC’s secondary complications: arthritis; iritis and uveitis (eyes); erythema nodosum (skin); vasculitis (blood vessels); fever and severe weight loss. The worst was an episode of viral encephalitis, when I was given the last ICU bed in Northern Ireland during Christmas 2001 and administered the last rites.
Fortunately, things eventually improved with prolonged corticosteroid treatment and a diet consisting of plain food, nutritional drinks and multivitamins. The following years were dotted with flare-ups around stressful times, such as the days leading up to my wedding, and in the autumn and winter particularly.
Both my GP and consultant would mention surgery and suggest speaking to people who had experienced it, but I wasn’t interested. For two years, I had excellent health while living a highly challenging, adrenalin-charged management consultancy job in London. The highly challenging became highly stressful, however, and a move home brought back good health.
When holidaying in Brazil in 2006, things broke down completely. I was going to the toilet 20 times a day and night, despite being on the maximum dosage of steroids, and I knew that my colon wasn’t coming back from this flare-up. At Iguaçu Falls, I barely made it to the edge.
I remember very little of the flight home and nothing of the next few weeks in Craigavon hospital, except one lucid moment when Mr Mackle’s registrar said it was vital I had my large bowel removed. I had a total colectomy and ileostomy (stoma) formation. My colon was so badly diseased that it was falling apart during surgery. Had my bowel perforated before surgery, I might have died.
My stoma was formed using the end of my small bowel, which was pulled through a hole in my skin about 5cm to the right of my navel. Waste matter (output) empties into a disposable ileostomy bag stuck to my skin. Sometimes the bag leaks, especially at night, and it’s up, wash and change bedding. My husband gets a rude awakening, and my denim days are gone, but I no longer have UC and none of the complications which made life a living hell.
If I had known how different life would be, I would have chosen surgery sooner rather than waiting for it to choose me.
I returned to work with only slight dehydration and minor blockages. Seven months later, a single banded adhesion (surgical scar tissue) tightened around the last metre of my small bowel cutting off the blood supply. It had to be removed.
While I knew I was lucky to be alive, this surgery proved much harder to deal with. Adhesion pain, severe dehydration, major blockages and restricted mobility have plagued me since. Attempts to return to work failed and depression followed.
My mental health suffered blow after blow. Not long after my first surgery, my father passed away from bacterial endocarditis as a result of infection from an otherwise insignificant cut on his finger. My father-in-law died soon after of non-Hodgkin’s lymphoma.
The breaking point came at Christmas 2007 when an excruciating pain I thought was from another adhesion turned out to be the result of an ectopic pregnancy. I needed open surgery to remove the pregnancy and fallopian tube and was completely devastated. I hadn’t known I was pregnant and desperately wanted to be.
The sensation of overwhelming loss of what might have been; of hope for the future; of faith in the Divine plan, yet gratitude for what had not been, was too much for me.
I was angry with myself for assuming that after all I’d been through I deserved a break.
My GP did her best to get me the help I needed but changes in mental health services in the North at the time meant I slipped through the net. I pleaded with my gastroenterologist to refer me to the clinical psychology department at Altnagelvin Hospital. That proved to be my lucky break.
Without the help of Dr Mary Dooher, I don’t know where I’d be. She helped me to deal with my history of poor health and repeated abdominal surgeries, fears for the future and, above all, my grief over the loss of loved ones, loss of the life I assumed I would have and of the things I will no longer be able to do.
Along with the support of my loving husband and family, Dr Dooher’s work enabled me to get back to the business of living and look forward to the good times ahead.
Little did I know I would soon need all the techniques Dr Dooher had taught me to survive what has been the worst experience of all.
In August 2009, despite having only one fallopian tube, all our prayers were answered and I fell pregnant. Christmas that year was fantastic and I managed to stay out of hospital for the first Christmas in years.
On New Year’s Day, I began to feel the familiar tightening pain in my gut, but because I was five and a half months pregnant the doctors couldn’t X-ray me.
A potentially fatal bowel obstruction was suspected so, despite the risks to me and our baby, I needed my fourth surgery in four years. My bowel had twisted and 15cm was removed.
Baby Liam survived the surgery and the crucial 24 hours after. Not long after that though, I sensed something was wrong and over the course of the next 24 hours we discovered we had lost our precious baby. The midwives at Altnagelvin Hospital were so good to all of us. We cradled him for a whole day. Family and friends rallied around us. Dr Dooher visited me and offered her continued support.
I had then and still do have a philosophical view of the whole experience. Yes, they were the worst of times but they were also the best of times. Never before had we felt such joy, hope and love than when pregnant. We weren’t sure we could conceive again and when we did we felt so lucky.
Our numerous challenges had been overcome and in those months we began to believe in the promise of good times ahead.
Liam’s legacy has been great indeed. Losing Liam led to me receiving the care I didn’t even realise I needed. Rigorous blood testing following his death determined that I was severely malnourished.
I now attend the Intestinal Failure clinic at the Royal Victoria Hospital in Belfast. Mr Gardiner and staff from the Nutrition and Dietetics department treat my symptoms of short bowel syndrome.
I’ve regained and maintained my weight, although I get dehydrated and tire easily and cannot commit to anything without caveats. Successive surgeries have removed my entire large bowel, about half of my small bowel and broken my heart.
I have a wonderful husband and loving family and continue to enjoy and look forward to our good times. I’ve been very fortunate. Others in my position have been less so, so I count myself lucky.