My story is in two parts – two bowel events separated by 30 years which had very different outcomes.
In 1985 I had my stoma. It released me from years of ill health caused by inflammatory bowel disease, the diagnosis changed from ulcerative colitis to Crohn’s and back again. They were never quite sure which one it was, but it did not matter as my stoma made me well. I embraced my stoma! I was able to work full time and bring up my daughter without crippling bowel pains, diarrhoea and all the horrors that inflammation of the bowel can bring. I still had the rectal stump which had to be checked annually for changes and whilst the mucous discharge was a nuisance, I managed it well. After my stoma op I developed severe endometriosis, another deep, infiltrating, inflammatory disease which continued to wreak havoc in my life, but my bowel health remained good.
Fast forward 30 years. In that time, I had many surgeries for the endometriosis, and the new gynaecologist I was under decided I needed a hysterectomy. I was extremely fearful as I’d been told by my last gynaecologist that it would be very dangerous, but the op went ahead. Disaster struck when my small bowel perforated after the surgery. Bowel contents spewed out of me vaginally and I thought I was going to die. I learnt a previously unfamiliar term that weekend – an enterocutaneous fistula – and despite my lifetime of lived surgical experience I had no idea what it meant. I was soon to find out – an enterocutaneous fistula is a connection between the small bowel and skin. It basically redirects the bowel contents leaking from the damaged area of the gut to the surface. There are many types of fistulae and the terminology is as follows –
Firstly, “entero” means bowel or gut and depending on what part of the anatomy is connected to the gut, determines the name of the fistula – for example:
Enterocutaneous: links the bowel and the skin
Enterovesical: links the bowel to the bladder
Enterocolic: links the colon to another part of the intestines
And so on… In the space of a few days, I discovered my type of fistula could potentially result in me never being able to eat and drink again subjecting me to being vein-fed permanently. I was in a state of deep shock – two days before, I had been having a lovely weekend with my husband in Cardiff and now this. My life crumbled. I was told it would heal, or it would be fixed but neither happened. It destroyed life as I knew it, and even though I was alive, I certainly was not living. A total of six months in hospital left me traumatised and had a terrible effect on my mental health. I saw too much, learnt too much and left hospital fearful of what lay ahead. By now I was eating small amounts, but this meant the output increased and more holes developed – at one point I was wearing three bags which leaked constantly. I was too nervous to even go for a coffee with my husband and eating became a challenge as the more I ate, the worse the output. I felt very isolated and alone and could not understand how I’d had such an awful outcome to a fairly routine surgery. I was too traumatised to ask questions, and I found the hospital very unsupportive; I had had the initial surgery in a private hospital as at the time I had medical insurance. I was the carer for my mother who had a brain injury, and I needed the surgery done quickly so I could get back to her – the biggest mistake of my life. She ended up in a home and died during the Covid pandemic. One massive bonus for me was the consultant was and remains an excellent support and without him, I doubt I’d have made it through.
We all know surgical complications happen, but this was different – it was permanent and life-changing, and I felt completely alone spending each day sat on the bed afraid to move and eat as it increased the output. Looking back, I can see I was quite seriously traumatised and when I did eventually see a mental health professional, I was diagnosed with PTSD. I felt heard and that was important as I finally felt validated in feeling the devastation I was experiencing and finally but very slowly began to process my feelings.
Ten years on and where am I now? I still have the fistula; one attempt at repairing it almost killed me. As my fistula is classed as low output (under 200ml per day) a further repair will not be attempted unless my life is at risk. I have had to change my life to accommodate the fistula and the management it requires. I can now eat and drink thankfully, but I have to change the bags every night at best – sometimes they will leak in the day which means a full bag change, and it does depress me sometimes. I am 64 now and retired so I can live a quiet life which suits me best. My husband was looking forward to travelling in our retirement (he is ex-military) and a cruise is definitely on our bucket list. My confidence is as much of a problem as the fistula – despite having it for so long now it still changes, holes open and close which can mean infections and generally feeling unwell but life will not wait for me to ‘get better’. The fistula has undoubtedly controlled my life and my thoughts for way too long and that must change. I am desperate to move on and break that deep psychological connection with the fistula even though the physical one will remain forever. Life will not wait.
Things I have learnt:
- There is no such thing as routine surgery
- That not every wound heals.
- That you are stronger than you think
- That sometimes, all a person needs is a hand to hold, a heart to understand and someone who listens without judgement – for anyone else going through this, I want to be that person for you.
- That empathy is quite different to sympathy and some people will just never have either.
- Just because it’s rare, it still happens, and you still matter – don’t let anyone convince you otherwise!
- Life will not wait so, as the saying goes, don’t ‘wait for the storm to pass, learn to dance in the rain’. It is tough but so are you.
Read Lauraine’s book “Sharp Scratch” to find out more about her experiences.
You can also read Lauraine’s #auguts story here.