Lauraine Clarke: My journy of living with an ileostomy and fistula

Lauraine Clarke
Lauraine Clarke
Life has changed for us but I too am changing and trying to embrace my ‘new normal‘. My second grandchild is due shortly, I will not let this win. Life is just too precious.

How we all take our health for granted! Until I started to experience bowel problems 33 years ago, I’d never given my bodily functions much thought. I’d always been reasonably well apart from those recurrent mouth ulcers, constipation, fatigue …. (bit of a clue there maybe). That all changed when in 1985 I started to notice a mucous like coating on my poo, this progressed to blood and eventually proctitis – as confirmed by the dreaded sigmoidoscopy. Having never heard of this I scoured the medical books to learn more, it didn’t make good reading as ‘ulcerative colitis’ and ‘Chrons disease’ were mentioned. I was 25 and had a two year old little girl, I worked full time and my husband was away in the Royal Navy, life became a struggle……

Fast forward three years to 1986 and my stoma was formed. The years leading up to the surgery had been difficult. As the proctitis inched up my colon, I became more unwell as the severe bloody diarrhoea took hold. I was frequently off work and moved in with my parents, so they could help with my daughter. I was admitted to hospital as my health deteriorated and I was losing blood faster than they could transfuse me. It was discovered I was pregnant hence this massive flare. I’d had X-rays, steroids and other drugs in an attempt to control the flare which was not good for this little bundle of life growing inside me. They suggested a termination in the hope my symptoms would improve but I refused – events took over and I was no longer pregnant. A rather insensitive doctor told me ‘ah well life is not a bowl of cherries ‘. I will never forget that time. I never conceived again after losing my baby, I didn’t get better and still ended up with a stoma. A colostomy first followed by an Ileostomy as the disease progressed through my colon.

Life with an ileostomy was however very good! I was free of all symptoms and off all medication. I had energy and a zest for life again. I had started a new job in the local council and my husband had now joined the Police. We settled into normal life and my ileostomy never really bothered me. I had few bowel problems apart from a leaky rectal stump which had been left in. I had been very ill at the time of the ileostomy surgery and they decided not to remove it, the doctors felt it was too dangerous.

About two years after having my stoma I started to experience abdominal pains again. They were different to before, but the doctors put it down to adhesions. Eventually I had a MRI which indicated a suspect mass on my ovaries, cancer was mentioned. Again, life was thrown into turmoil and despair as more surgery was hastily arranged. Thankfully no cancer was found, this time the diagnosis was endometriosis, the consultant said it was the worse he had ever seen, so bad my insides were glued together, and nothing surgically could be safely carried out. So, they closed me up and said I would have to take medication to manage my symptoms. The endometriosis continued to plague me however and frequent hospital stays became the norm. I’d started to develop fluid filled cysts deep in my abdomen around the top of the rectal stump. They couldn’t say for certain what these cysts were, but my gynaecologist decided the best course of action was to just drain them; he did this repeatedly always under general anaesthetic over a period of 20 years………again looking back possibly not a good move as I believe this contributed to the creation of the sleeping dragon within ……

In 2013, I was feeling much better. My endometriosis was much improved owing to me reaching menopause (endometriosis is driven by oestrogen), and the cysts had all but stopped recurring. My gynaecologist had retired, and I had been referred to a new Consultant. He suggested a MRI which indicated a suspect mass and a hysterectomy was arranged. It took me two years to go ahead with the surgery and it took place in January 2015. The hospital was 80 miles from home and my husband took two weeks off work – we did not have one inkling of what was ahead of us.

The surgery was difficult to say the least. My uterus and ovaries were seriously stuck down, with my small bowel entangled amongst it all. The area of the repeated aspirations at the top of the rectum was literally fused to the small bowel which was in turn fused to the uterus. I lost a lot of blood as they tried to free all of this and whilst the hysterectomy was I suppose a success, they were unable to remove the rectum. Three days after the surgery I still felt like death and stood up to see what seemed like gallons of green liquid gush out of me, my bowel had perforated. The next few weeks were a blur as it was explained to me I would have to stay in hospital for three months at least. I would be fed through my central vein and I would not be able to eat or drink. This would give the area of the bowel a chance to heal as more surgery to repair was too dangerous. I did go back to theatre for them to put a more substantial drainage tube in and I also underwent further CT scans to assess the damage. I asked one of the doctors exactly what the scan had showed, and he said ‘enterocutaneous fistula, a complex one with tracks into the vagina ‘. Having no idea what this meant, I turned to Dr Google and realised the magnitude of what had happened. They inserted a central line into my jugular vein to administer the artificial feeding. I had ballooned to 16 stone owing to oedema and the serious state I was in. I was in a state of shock. How could this have happened. I had spent years telling everyone how difficult my insides were and whilst I understood my new doctors position owing to the ‘suspect mass’, I bitterly regretted that surgery, I just felt completely terrified and so so devastated……

The ‘suspect mass’ was benign, a fibroma which had actually been picked up many years ago on an earlier MRI and was utterly harmless.

My stay in hospital was surreal. I had gone in a strong, robust woman and was now a broken shadow of my former self. I was surrounded by people being vein fed permanently owing to similar serious surgical complications. I heard their stories as to how their lives now almost revolved around hospital stays and illness, intercepted with the odd good day. They all seemed to have underlying disease like severe Chrons and has been chronically ill all their lives. I’d been well though, I felt robbed of the most important gift we all have – our health.

My life as I knew it unravelled as my husband’s business ground to a halt and my mother, for whom I had been caring for owing to a brain haemorrhage, went into a home. Without us there overseeing things, she became more confused and tried to set her house on fire. I was on autopilot. My general health slowly improved but I still had the fistula. They said if it didn’t heal within 3 months then it probably would never heal and I would have to live with it or risk more surgery. I left hospital after 14 weeks. The fistula track had come out onto my mid line scar and I had to wear dressings on it, I still had discharge from below and had to wear pads. I felt completely broken. I couldn’t eat much but I was off the artificial feeding which was a massive bonus. My diet consisted mainly of calorific protein drinks along with some snacks. I found the more I moved about, the worse the discharge down below was. I felt very vulnerable, I didn’t feel safe, a great malaise swept over me. I only felt safe sat on my bed looking out the window and became very very depressed and quite overweight. I visited my consultant in Cardiff regularly but the holes on my abdomen never healed. The more my Consultant almost normalised events and said how well I was doing, the less my husband understood and felt I should ‘cope better and stop complaining’. I recovered somewhat from the surgery and felt stronger, but the fistula became almost an obsession as I prayed and willed the holes to close. I tried all sorts of weird ‘cures’, even visiting a healer but nothing worked. I’ve since discovered that if the fistula doesn’t heal in the first three months then it wouldn’t, at least not without more surgery. In the midst of all this sadness however, something wonderful had happened. I’d become a nanna, my only daughter had had a beautiful little girl who was the happiest ray of sunshine ever. She filled my life and forced me to be positive about this massive blow to my health. In addition to my granddaughter, I also had twin nephews aged just 7 at the time, who I was like a gran to so my life evolved around the children, my immediate family and a few close friends. Plus of course there was also hope that the fistula could be repaired although I would have to wait two years. This became my ultimate goal and I counted down the months until this nightmare would end……. or would it?

I went in for the repair surgery in March 17, two years and two months following the fateful hysterectomy. I was in reasonably good health with the fistula ironically being well behaved as I had just come off antibiotics for another infection. That was a big problem with the fistula, repeated infections causing fevers, chills and sometimes a hospital stay. I would be so glad to be free of it, I was nervous and excited at the same time. I went to theatre and came back to the ward about 6 hours later, it had gone ok but had been more difficult then expected. The repair had required several cuts and joins in the bowel (anastomosis) but I was finally fistula free. Just before I went to sleep that night, I spoke to my family online and my stoma started working. I felt almost happy for the first time in a very long time.

And then things took another massive turn for the worst ……

I developed a further leak in one of the joins made in the intestine. I went back to theatre and this time when I woke I felt awful, ‘wanting to die’ awful. I could barely move with weakness, my gut had stopped working and my observations were all out of kilter. The nurses were not concerned, and I had been branded as ‘an anxious patient’ and I can’t really disagree with that but who wouldn’t be! On the Thursday I woke up and cried, I really wanted to die. I just felt so awful, yet no one was phased. My temperature however was by now almost 39.6 so alarm bells did ring, they gave me paracetamol and called a doctor. Sepsis was mentioned. My husband came at 1 o clock and as he held my hand I just wept and asked him to help me somehow. I sat on the edge of the bed and he put his arms around the neck, I could feel his tears drop down my back. The nurses were telling me to move and walk so I managed a few steps before collapsing back on the bed. Then it happened, I couldn’t breathe – my lungs suddenly stopped working. My husband called for help and the nurse said I was having a panic attack until she took my SATS – they were 72% – seriously low. She called the Crash team and I experienced the NHS at its best as they descended, and an oxygen mask applied which replaced my lungs. I was swept off to intensive care where they spent several hours trying to save me. I remember most of it and it still haunts me. I remember my daughters hand in mine willing me to live, and my sisters worried face looking down on me. I remember the thirst that caused me to hallucinate about orange squash and I remember the images of dancing fairies and the strange script that kept appearing all over the walls, I think I was close to death at times. My poor husband barely left my side and to this day he cannot really talk about it.

I left critical care a few weeks later. My lungs recovered fairly quickly but the bowel repair had failed. I had a new fistula and it was possibly worse than before. I was back on the artificial feeding with the prospect of going home on it. They could not give me any answers as to why this had happened and just said I’d been unlucky. My worst fears had now been realised. Not only was I back to square one, I’d had a near fatal respiratory attack to boot and now could possible end up on permanent artificial feeding. My liver started to object to the artificial feeding, I was diagnosed with gallstones and was severely anaemic. My bladder was also not functioning properly. I felt dreadful, I couldn’t bear going home like this, how would we cope.

It’s now June 2018 and I write this as I gaze out at the beauty of the Snowdonia mountain range. I’m drinking a lovely latte and eating an ice cream. So yes things are much much better. I left hospital in 2017 after 4 months able to eat small amounts having come off the artificial feeding. I now have to wear a bag as opposed to dressings on the fistula as the output is slightly heavier, but I’m used to that having had my ileostomy for over half my life, it’s like having extra small stomas in a way but the fistula is much harder to deal with and causes frequent infections and lots of pain. Plus, my bladder is not right and I really worry about that. However on my daughters 34th birthday we decided to go up Snowdon, on the train on a blisteringly hot day. I sent her a picture from the top. She has never known me without illness and has grown up with this but we are very close and looking at her and the rest of my family, I’m counting my blessings.

A fistula is classed as a surgical catastrophe and I certainly agree with that. But I’m learning to accept and live with it rather than constantly hope for it to heal, which it won’t. Life has changed for us but I too am changing and trying to embrace my ‘new normal‘. My second grandchild is due shortly, I will not let this win. Life is just too precious.