I’ve had about 30 operations and procedures since 1985 when I first became ill. I’ve always bounced back. I remember when I had my ileostomy in the late 80s, within a few weeks I was being dragged up some mountain by my husband! A history of bowel disease and severe endometriosis certainly meant lots of hospital involvement but I did ok on the whole. Or maybe, I became complacent. I came to think it was normal to have all these procedures and operations – I just dragged myself through life which consisted of work, family, oh and hospitals. I just accepted it, pushing myself to get back to work after every operation, not realising these procedures were causing so many problems inside, both physical and psychological.
Then in 2015 I had the hysterectomy which changed everything. My surgical luck ran out as the operation was very difficult, with serious life changing complications. I’d never had an op gone wrong before and there was no turning back, a horrible feeling of absolute despair engulfed me; what had I done.
I’d gone in for a double whammy – a hysterectomy and removal of rectal stump. The former because I had a suspect mass and the latter because it was a right royal pain in the butt and a cancer risk. I’d never had such major surgery in my earlier years as the consultants at my local hospital felt it was too risky. But I was now told my pelvis felt more mobile and surgery, although expected to be difficult, was eminently doable. I would finally be free of doubt over the ovarian mass and my leaky painful butt would be a distant nightmare. It look years of repeated ultrasounds and surveillance to convince me I needed to have this done so I could get on with life, so I went ahead.
My expected week long stay in hospital lasted over 3 months. I went in early January and when I came home it was Easter. The Christmas detritus of the previous festive event scattered about the place. I felt lost, it didn’t feel like home, the cats were wary of me, things had changed, I somehow felt I didn’t belong. I no longer trusted my body and every twinge became a threat. I was a nervous wreck. In hospital you are in a cocoon almost, the daily routines take over – the water trolly trundling in at 6am, the chatter of the day staff arriving at 7am, breakfast, the drugs round, wash or shower, doctors, bloods and on and on and on. Then tomorrow you do it all again. As my family lived 80 miles away, we had to cut down on visiting as it was too stressful for my husband and family and to be honest just too expensive. We had spent hundreds possibly thousands of pounds on hotels etc so my husband could stay close in those early awful weeks – this catastrophe had already cost us dear in so many ways……
So how do you cope when these awful complications happen? In my case, I became almost a recluse. My doctors were supportive but this was an unknown entity. The injury to the bowel had been caused by surgery so now there were no options really to fix it, it was suddenly just too risky. I had no idea what the future held, I couldn’t plan anything or look forward, felt unwell most of the time or at best exhausted, yet I was told I was lucky, it could have been so much worse and whilst I understood that I bitterly regretted having the surgery and all the problems it had caused. Then of course there were the fistula bags to get used to and all the paraphernalia of pastes, seals, flanges etc – having an ileostomy was an absolute doddle compared to this. Thank God for Pelican and Eakin, my stoma suppliers – their support on every level has been superb, life saving even on my very dark days. Always there and always keen to listen and help.
I became seriously depressed. If I ate anything more than a tiny sandwich the discharge from the holes on my midline incision got worse. At this point, May 2015, they were saying they were sinus holes. I’d had a MRI done and they couldn’t see a connection with the small bowel. This was great news but my body was telling me a different story and because there was ‘no clinical evidence‘ I felt I was going mad. That was really hard and I felt so invisible and isolated. I then became afraid of food, only eating cornflakes, yogurt and maybe a white bread sandwich. Once I ate beetroot and the sinus discharge turned pink, I was hysterical but no one understood. Why hysterical you may ask – well there is a world of difference between a sinus and a fistula. A sinus will still discharge but it’s a sort of blind tunnel, not connected to anything and has a good chance of healing and is quite manageable. A fistula is a different ball game as it’s connected to something inside like your bowel or bladder. It’s far more damaging and rarely heals without surgery. As time went on, the fistula emerged in all its ghastly glory, I was finally believed and the harsh reality hit. This was not going away any time soon.
So what help is available? Not a lot sadly. I did talk to my GP but all this coincided with my surgery being taken over by the health board, it was essentially run by locums. So they offered anti depressants which did nothing. I did have some counselling but that particular counsellor felt that as what had happened was so traumatic, he wasn’t qualified to help. I went through the system and am now on a waiting list for EMDR – EMDR is an acronym for ‘Eye Movement Desensitisation and Reprocessing’. EMDR is a powerful psychological treatment method that was developed by an American clinical psychologist, Dr Francine Shapiro, in the 1980s. It’s mainly used to help people suffering from PTSD (Post Traumatic Stress Disorder) but I’m not sure even that applies. The trauma is not in the past as it’s still there – I see it everyday. Plus the fistula changes all the time, I have good weeks then really bad weeks and there is no treatment just pain killers or antibiotics, both of which I now rely on. When surgery results in serious complications, I naively expected the cavalry to turn up to fix it but with this type of fistula, they invariably do not heal and I’m finding that very very hard to deal with.
So when life gives you lemons ………… you get lemons. What you do with those lemons is down to YOU and you alone. Stay sour or make something sweet.