I live with an enterocutaneous fistula. Never heard of it? Neither had I until nine years ago when I had no choice but to learn about it for the first time. It didn’t make for good reading.
I’ve had health issues for almost 40 years starting with a Bartholin’s abscess back in 1984, a few months after my only child was born. This progressed to proctitis, a nasty inflammation in my bottom and before I knew it, a colostomy was being mentioned. I had the surgery and the surgeon told me it was probably Crohn’s disease, but he wasn’t certain. A few years later, the disease had returned in the remaining colon, and I had an ileostomy. I can’t say I was sad to see the back of that rotten colon; having a stoma released me from years of debilitating ill health and I felt almost reborn. I had an energy and vibrancy that had been so sadly lacking for too many years. My stoma gave me my life back. A few years later, my health problems resumed when I was diagnosed with severe endometriosis, another debilitating, inflammatory condition which plagued my life for the next 25 years with countless procedures and operations. I worked full-time until 2012 when I retired, defeated and worn out. Three weeks later my mother had a massive brain haemorrhage, and I became her carer. Working full-time was in many ways easier.
In 2015 I had a hysterectomy – finally, a panacea to set me free of problems caused by the endometriosis. The operation was complex and two days after, my bowel contents flooded out of me from the one place it should never flood out of. I was rushed to another hospital. It was January, freezing, we lived 100 miles away, my husband slept in the car, and my mother was in temporary respite waiting for me to return. I felt like I was having the worst nightmare from which I couldn’t wake up. I was told I would develop an enterocutaneous fistula; I would not be able to eat or drink for at least 3 months, I would have a permanent port inserted in my neck to nourish me and the fistula may not heal. Depending on the amount of output from the fistula, I may never eat or drink again and would be reliant on TPN (trans parental nutrition). But I was lucky to have survived the often most fatal of complications. I didn’t feel lucky – three days ago I’d been up the Brecon Beacons! Toxic positivity ruled the day but, in my heart, I knew this was bad, and life had changed forever.
What is an Enterocutaneous Fistula?
It’s an abnormal connection between two surfaces, in my case my small bowel to my skin or more specifically, my abdominal wall. I suppose if you think about it, it’s quite incredible how your body forms this connection in order to channel away the toxic effluent which would otherwise undoubtedly have killed me. However, it’s a devil to live with and manage and also – fistulas are sneaky. They start off as a tiny little hole, perfectly round which seep innocuous liquid, requiring little more than a gauze swab, easy peasy. Then the demon awakes and starts to spew out all sorts of everything plus of course the same enzymes that digest that juicy steak I was eating last week now have a go at your skin, which in my case just sort of disintegrated, meaning the bag didn’t stick and life as I knew it ceased to exist.
Nine Years On
It’s been a rollercoaster. They tried to repair the fistula, but I had respiratory failure and nearly died, the repair had failed, and I developed sepsis. My life was saved by the amazing intensive care team. On reflection, I’m actually ok ‘for a fistula patient’. I hear that all the time from the lovely doctors who look at me with amazement at my story, knowing there is little they can do to help. There is always the confusion as to whether it is or isn’t Crohn’s disease especially as I’ve now developed an agonising eye condition called uveitis, which is literally like someone sticking pins into your eyes, and then some. The treatment for this is steroid drops which have given me cataracts, so I don’t see too well – not good when you have three bags to change every day! But we adapt as we have no choice. The condition is rare and living with such a thing is hard, debilitating and compromises my life. I fear growing old but then I know that’s a privilege denied to many, so I remain grateful to still be here and appreciative to organisations like Bowel Research UK for doing what they do.