My name is Lesley and I live with my husband Ian and my young son, Xander in Northamptonshire. In June 2012, following 2 years of unsuccessfully living with Colitis (following the birth of our son), I underwent surgery to have a stoma fitted. At 36 years old, this was the last thing I wanted but I’d run out of feasible options. If a stoma was all I had had to contend with last year, life today would be a lot easier…
On Sat 23rd June, I was feeling very weak and decided to take my consultant’s advice to admit myself to A&E to undergo a subtotal colectomy. I had been hoping to have this done as a ‘planned’ operation but felt too tired and ill to wait any longer. The doctors made 12 attempts to take blood and cannulate me (all unsuccessfully) so it was decided that I would have a central line fitted on Sun 24th and have the operation on Monday 25th. The central line was fitted with me in excruciating agony – this is an adjective I could use daily for the next 8 months of my life! On Monday, I met with a stoma nurse to have the optimum site for surgery decided on and was prepped for surgery. I opted for an epidural as they explained that the pain relief would last longer and the surgery went well. Afterwards however, I awoke screaming in agony as the pain relief had not reached my abdomen and eventually they tipped my bed backwards until I felt no pain.
On the ward, I was made to stand 48hrs later (Wed) and when I couldn’t, they told me I had “lost confidence”. I asked them how could I have lost confidence when I had been walking only 2 days previously? In the end, they got me out of bed with a roter-stand. By Thursday I was complaining of a burning pain in my left leg and had spotted a blister, which was dismissed as a mark from my catheter. This continued until Saturday when my husband received a phone call urging him to come to the hospital immediately as they thought that I wouldn’t last the night. 5 days after the operation my blood pressure had dropped to dangerous levels and they needed to stabilise me. To cut a long story short, they gave me plenty of antibiotics; all kinds as they didn’t know what they were dealing with and I felt a little better. I was sent back down to a normal ward on the Monday, 1 week after my operation.
For a further 2 weeks, my blood pressure never got back up to normal, the physios had to hoist me out of bed and I refused to be moved much of the time because it hurt so much with just two members of staff but they never had the capacity to use 4 nurses. My surgeon had diagnosed cellulitis and in my naivety, I accepted this and was relatively unconcerned. After all, how could I know what was ‘normal’ feeling following abdominal surgery and by now the redness and swelling in my leg was being monitored and treated with antibiotics. However, if you’re reading this, you know that antibiotics don’t help you if it’s actually NF you’re dealing with and 21 days after my initial operation, I again ended up in ITU fighting for my life. I have little memory of this period and I can only imagine the nightmare my husband went through, both for himself and for wondering how our 2 year old son would grow up without his Mummy. During this time, I underwent 6 debridement operations to my stomach and my left upper thigh. The cuts went so deep I firmly believe I would be dead if I hadn’t been so overweight and had tissue to spare. They woke me up thinking that all had been caught and congratulated themselves on a close call successfully dealt with. However, a few days later, I collapsed again and underwent a further 3-4 debridement operations – they hadn’t fully caught the bug and it was spreading further to my abdominal flanks. Additionally, it affected my stoma site, meaning they had to re-site to a less ideal place.
I woke to faces and voices telling me that I had been very poorly and that they had all been worried about me. I had no idea I’d had NF. I had no idea what date it was. By this time I’d been in hospital for approx. 6 weeks. It was now the middle of August and I’d missed the Olympics! I was being fed through tubes, couldn’t move any part of my body and couldn’t speak. Eventually I could write short messages on a pad to ‘talk’ to my husband and ask questions. I was moved to HDU when I was officially out of danger and then down to a main ward at the end of August. 11 weeks in hospital so far…
Because dressing changes were so agonising (they had tried it with me awake twice and painkillers didn’t touch the sides), I was taken to theatre twice weekly and put to sleep. This happened until the end of October, so I had approx. 30 general anaesthetics in 4 months. A new Vac Pump was fitted sometime in September and my feeding tube was removed, though I continued to be unable to eat and vomited constantly. At least the 5 stone weight loss is a silver lining!
September to December was one long round of daily visits from by husband, being sick and in agonising pain, sleepless nights, being starved for anaesthetic and desperately waiting for the weekend when I could see my 2 year old son. By Christmas, I had been in hospital for 6 months and missing him felt like a bereavement. I couldn’t say his name without crying. On the days I felt well enough, I bought presents online to plan for a Christmas I knew I couldn’t share. Because I had been weak prior to my hospitalisation, because my diagnosis was delayed for so long and because my wounds were so deep, it was December 21st when I could finally undergo skin graft surgery. I had a 21cm x 21cm square taken from my right thigh and like a fellow survivor has described, my actual skin graft took well with little pain but my donor site hurt more than I can describe. Almost as much as having over 200 staples taken out of my stomach AWAKE.
In January, I was sent to a rehab centre to learn how to sit, stand and walk again. However, as this was even further away from my family and the staff weren’t at all friendly or helpful, I nearly suffered a nervous breakdown. I begged a counsellor to arrange a transfer closer to home and I got there early February 2013. What marvellous nurses! The opportunity to see my son each day and their encouragement meant I finally made it home on the last day of February, 250 days after first entering hospital. I was able to slowly walk up one flight of stairs, which was enough but not entirely helpful when we live in a 3-storey townhouse.
My donor site however, had not healed and I still required constant visits to the hospital (a 40 mile round trip) for dressing changes, visits to the stoma nurses, physiotherapy and for all the other little medical issues that crop up when you’ve been so ill. I was devastated to send my son to nursery full-time when I came home but I was not strong enough to look after him alone and my husband needed to work to keep what little financial stability we had. Xander’s one and only grandparent moved herself in when I was unconscious and stayed with him until I came home and for that I will be forever grateful. The distress and upheaval he has experienced in his short life is more than anyone should go through.
I was so strong in hospital. Everyone kept telling me how well I was coping. But it all came apart in the summer. Crippling anxiety, suicidal thoughts. The only thing keeping me alive was the fact I couldn’t let my son grow up without a mother. I poured my liquid morphine down the sink to stop myself from taking it and I begged for counselling. None was forthcoming. I was put on a never-ending waiting list until one day I broke down at one of my hospital appointments talking about suicide and an appointment miraculously came through. I had gone from being an attractive, self-assured 36 year old to someone with a stoma and hideous scarring. Of course the tiredness doesn’t help you to feel better – when I took over looking after my son at the end of May, I would often get through the day like a zombie and be in bed before his 7pm bedtime, sleeping through the night. I don’t mind saying this has put a huge strain on my relationship. 8 months living apart on top of such physical scarring and tiredness. I was a mess physically and emotionally.
4 months ago in August, I found a different site from this one and I realise how lucky I am to have survived NF as so many others don’t make it. My stamina has slowly returned; only my donor site remains unhealed, though I suspect it will be bandaged for just another month or so. More importantly, I have an amazing husband who loves me and a 3 year old son whom I adore. Every day watching him grow fascinates and delights me. I am writing this just a few days after Christmas and what a Christmas it’s been. So very different from last year!
It hasn’t been easy but I’m proud of where I am less than a year after I’ve been discharged. I’m volunteering in a local primary school so that I can work when Xander goes to school next September. Ian and I are planning an exciting house move in a new location and I stop and take notice of the world and all that I can find pleasure in. I wouldn’t wish the agonising physical and mental pain on my worst enemy but coming so close to death has meant I have never felt so alive. And the scars mean I’ll never become complacent and forget.
It often feels as though no-one else can understand what I’ve been through. My husband has been (and remains) amazing but his was a different journey. But hearing others’ stories on this site helps and so I share my story too. What a nightmare! But less than a year after I made it home, I’m happy and looking forward to a fantastic future.
If anyone would like to get in touch to talk about their experiences, I’m very happy to give my details. It’d be good to chat to a fellow survivor.
Thanks for listening,
Lesley (Dec 2013)