My battle with chronic illness began when I was about 17. I was out being a stereotypical teenager when I realised that I was bleeding heavily from my anus. Being 17 and embarrassed to tell an adult or go to the doctor, fearing I’d be exiled from my friends due to the taboo around colorectal related diseases I hid it and choose to ignore it for around 3 months. I began experiencing intense pain and cramping whilst loosing copious amounts of fresh red blood. Over time I began loosing weight and became very fatigued and weak. Until one day, when I collapsed. I was rushed to hospital where I was forced to explain to the medical professionals what had been going on. At first I was laughed as if I was a teenage girl who couldn’t manage her period. That’s until my bloods came back, things changed dramatically then. I was rushed to an emergency colonoscopy! My worst fear, dignity lost and feeling so vulnerable. The doctors gawping at what they saw on the monitor. The whole of my colon was covered in hundreads maybe thousand of lumps, some ulcerated and bleeding. The doctors explained that all these lumps were potentially cancerous…
The next few weeks waiting for the pathology report was hell but during this time I had done my own research and I wasn’t suprised to hear the doctor relay to me that I had FAP. What I wasn’t prepared to hear was all the polyps were on the last stage before being classed as cancerous growths. My heart in my mouth, not one lump but hundreads. I left the doctors clinic, being told that I needed my colon removed as soon as possible as the risk was too high! In the following weeks I saw a multitude of geneticists and surgeons to plan my operation and ongoing treatment plan.
11th July 2013 was the day of my colectomy, as nervous as I was I just wanted to be rid of my diseased bowel. Everyone told me I was coping ‘too’ well with the prospect of having my colon removed, in fact I was shitting myself! My surgeon explained the surgery could go 2 ways. 1. Sub total colectomy, leaving in the rectum and having the ileum (small bowel) pulled down and be connected to the rectum) 2. Same operation but I could wake up and have an ileostomy. As I woke from the anesthetic I immediately tried patting my abdomen trying to feel for the ileostomy. Imagine my relief, when I didn’t feel one. In the hours following the operation I immediately declined. Spiking high fevers, which led to me having seizures, delirious, vomiting fecal matter and blood, screaming in agony morphine and ketamine didn’t even touch it. The doctors struggled to find the source of infection, my organs started shutting down and I felt so ill I honestly thought I was dying. At that time I would have rather had died than fight what was happening in my body. NG tubes were inserted, epidurals and 6 different types of strong opiate pain killers, bags of blood, seditives were given to keep me comfortable. My family were warned that if the infection wasn’t located that I would die within hours. My family fought for an ICU bed but the hospital I was in couldn’t manage me so it was decided I would be transferred to somewhere that could manage me effectively.
Whilst I waited for a bed at another trauma centre, it was decided I would endure another surgery. To go in and fix the leak, contain the infection clean it out and fix the internal bleeding. All I remember was pleading to the aneathesist to promise to me that I’d wake up and I’d live. I remember him stroking my hair and holding my hand, saying he’d look after me and his face would be the first face I’d see when I’d wake up! As I woke up the anethesist helped me fight, he explained that this time I had my ileostomy. That it would be a hard fight to good health but my Stoma had saved my life! As I was still waiting for my ICU bed at another hospital the anethesist decided it would be best for me to stay with him until it was time to transfer. He stayed and held my hand, moistened my lips with water and waitited with me for my family to arrive. He not only gave me comfort and hope but them also. He stayed past his shift to make sure I was safe and comfortable.
Within 24 hours of being at the new hospital they had identified the cause. I not only had 1 source of infection but 4. 1. Septic Shock 2. Peritonitis 3.Pneumonia,leading to collaped lungs, fluid build up and a blood clot 4. Liver and kidney damage 5. Intestinal failure. I was in ICU for a month. Allowing my body to fight the infection and repair. Following this I spent 4 months on a intestinal failure unit where the staff worked hard to get my ileum (small bowel) to work using TPN(afticicial nutrition, via heart) and rehabilitate me.
This was the first time I was well enough to begin to care for my stoma. I was an 18 year old young girl scared that no one could ever love me, that I was deformed. The gas from the Stoma would make me jump. At first I refused to care or even look at my stoma but one day when the nurses was changing it, I saw it from the corner of my eye, a small strawberry looking thing. That’s when I realised that it wasn’t scary. Day by day my confidence grew. During this time the friends I had deserted me, they didn’t know how to handle me apparently. It broke me for a while. I tried to find meaning in what I’d been through and what I lost. Eventually all my hair fell out. I was completely bald. I now was the girl who was bald, been through hell, had terrible scars and had a Stoma! My self esteem rock bottom. My faith and positivity crushed.
When I returned home, I struggled to fit back in again. After being in hospital 6 months I struggled to adjust. I just wanted to feel ‘normal’ so I’d sneak out and go drinking with my friends. I desperately just wanted to be the old me, show my remaining friends that I’m still me. Looking back now I was so vulnerable. My luck was about to change, during one of my rebellious sessions. I met the love of my life. My reason to live and strive to get better and be the best me I could posssibly be. We’ve been together 4 years currently. There isn’t one thing he wouldn’t do for me. He’s my registered career but he’s so much than that. He deals with every aspect of my illnesses, helps me with my stoma, helps me cleans up leaks, baths me and helps me get changed. More importantly he makes me laugh, see the positive in the world. Makes me live, laugh and love.
I had a year free of medical drama but that abruptly came to an end. I soon began experiencing frequent vomiting, mostly fecal matter. My stoma behaving erratically, some days no output other days I’d be loosing litres. Followed by severe gut wrenching pain. My team kept admitting me to hospital for symptoms of obstructions. Each time the admission was about 14 days. Where I’d be treated with pain killers, anti-emetics, NG tubes and TPN to give my gut a rest. These obstructive symptoms went on for 2.5 years. At the same time I was battling severe fatigue and a severe bout of colitis in my defunctioning rectum. Lots of enemas needed antibiotics, steroids and foams used to irrigate. Whilst managing chronic pain, sickness, fatigue, dehydration, nerve damage, malnution I was battling through nursing school. Nursing school helped me take my mind of my current situation and give back to those in need. It helped me cope and gave me something to fight for. Gave me a place in society rather than just the ‘sick girl’.
I eventually decided that I couldn’t cope anymore, I became extremely depressed and upset with myself as my physical state was dictating what I could do and I worried it made me look incompetent in nursing. My surgical team decided to do a proctectomy (rectum and anus removed) and an exploratory surgery to investigate my blockages. Here they found 4 Desmoid tumours. 2 were removed surgically the other 2 couldn’t be. The tumours were strangling my stoma and small bowel. The bowel had died where it had been strangled. I lost 5m of small bowel and had a new ileostomy placed. I was placed in HDU to manage my pain and symptoms. I was given a epidural and the care was amazing. Although I was crushed by the news of the tumours, I was glad there was a reason I was feeling so rough. The recovery after surgery was rough, as you can imagine you use your bottom to sit, stand, lie etc. It was extremely hard to get the wound to heal and keep it dry. I also experienced something called phantom rectum, where you feel your gonna explode with poop but you can’t because your bottom is stitched up.
So where am I now?
Currently I am now waiting to hear what treatment I need for my tumours I’ve had radiotherapy and waiting for chemotherapy. I am unable to work and looks like I won’t be going back in the foreseeable furture… I loved nursing it was part of who I was. I’ve found it extremely hard to adjust to my new way of life. I used to be extremely independent and now I need someone to help me get dresssed and push me around in a wheelchair. I’ve suffered massively mentally. I’ve noticed there isn’t lots of help and support out there for spoonies mentally. I have to use the spoon theory to manage my day.
I hope I can reach out and help some one in a similar possition. I don’t want anyone to struggle or feel alone. I want us to have a voice, a platform!
Please if you need some one to speak to whilst I’m setting my blog up please contact me via email; firstname.lastname@example.org
I’d be happy to talk, give reassurance even if it’s not health related please don’t feel alone?