This is the first personal blog post and I wanted to use it to explain how this all started. This blog is not going to be delicate or gloss over anything. It is going to explain EXACTLY what happened. If you are squeamish or ‘delicate’ – I would usually suggest you leave. But don’t. Stay. Because this is real life and that is something that can never be erased or glamour-ed up.
In 2012 I was staying at a friend’s house. I had not been well in a long time about a year, 2011). My problem wasn’t actually my stomach – it was sickness. I always felt sick or was being sick. It had become challenging to stay hydrated and maintaining my weight was impossible.
My GP had tried Cyclizine, Domperidone, Metoclopramide, Prochlorperazine and Hyoscine over the past year but things were reaching dire levels. I had been introduced to the whole family of Antiemetic’s (doctor-speak for anti-sickness drugs) but was losing the battle.
I was personally feeling more than depressed. I was feeling exhausted, physically weak and shaky, low, depressed and even considering darker thoughts. I could not get energy from food and had actually started to resent the entire process of eating. My real world job was becoming impossible and that was breaking my heart.
I had a great job. I was a Wellbeing Worker (supporting people with mild to moderate mental health conditions) and, until 2012, had loved it. I loved my job which I know is viewed as being an anomaly but I had worked hard to get there. Holding down three jobs whilst putting myself through University and living off noodles and water. I had enjoyed the stress of deadlines (I’m a freak) and was happier when working than watching crap movies at the weekends.
But I had been struggling. I think I thought that I could ‘Pretend’ my way through whatever illness I had – if I could just keep pushing forward then it would pass.
It was on a Sunday when I woke up and threw up in a bin by the bed that I knew I was out of luck. By then I was on Omeprazole for, what I thought was reflux. But it hadn’t been working and I knew it (which was worse). I text my friends, who had disappeared to Church, from a cramped-up cold ball of sweat in their hallway to tell them “Something’s wrong – I need help” (Yes – I text using full punctuation)
It was painful using those three words ‘I need help’ but nothing compared to the feeling in my body. It felt like a deep ache, a fist had grabbed my lower stomach and bottom of my lungs and squeezed. I was shaking and sweating and freezing at the same time. When I crawled to the toilet and pulled myself on – blood just splattered out my backend. It felt strange, like I was urinating through the back passage but when I looked it was blood with bits of tissue and (technical-speak-alert) gunk. I thought it had passed but then wave after wave kept hitting me.
After about half an hour, it had passed and the pain went with it. I felt fine. My friends appeared and I sheepishly admitted that whatever had happened was gone. An hour later I was back on the toilet with more blood, more congealed masses and bright red water. My friends called an Ambulance.
The hospital was the right place to be. Everyone said that. I was admitted through a quiet ER with rectal bleeding and sent to a surgical ward. I was given IV fluids, morphine, Cyclizine and steroids. The pain did not leave. People seem to think that morphine is a magical drug – let me inform you from my experience. Morphine cannot erase pain. It can maybe take the screaming edge off – but for chronic pain sufferers it is not a miracle pain killer. It is just another pain killer on a list. It does a barely adequate job and no it does not give any high or make one feel any less shitted.
The Cyclizine was another caper altogether. It was wonderful directly put into an IV. It did cause a slight burn but it was nothing compared to the pain elsewhere and quite frankly – I never ever felt the ‘burn’ at any level the nurses were always warning me about. What it did do was travel a little warm path across your body offering immediate relief from vomiting. It never lasted beyond an hour – but it was always the highlight of my day.
My Surgical Consultant passed me to a Gastrointestinal Consultant who claimed that he had no space on his own ward and that I would have to move to the Surgical Ward. I was moved from a general Ward to the Surgical Ward.
Three weeks I stayed in that ward. Some patients died, one in front of me. I met some good and kind fellow patients who deserved more time. My own Consultant was glib and rude at worst and flippant at best. He eventually diagnosed Crohns but did not turn up himself to tell me.
Instead he sent three members of his junior staff to tell me it was a condition called Crohns (this was my first diagnosis – it would not be my last), that it was incurable and that they were struggling to get on top of it. It was also everywhere. Most people think that Crohns is in your bowels but it can appear anywhere along that pathway. Mine was in my throat, stomach and multiple patches in my bowels.
They asked if I wanted a Councillor which I declined. They knew that my stats were dropping every day and that other organs were now being damaged. I was 25yrs old, steroids were not working, my immune system was now attacking my entire body and they told me I could not expect a long life ahead of me.
And that, my friends, is all I could have told you about Crohns if it wasn’t for the existence of Google and an IPhone because in Scotland’s NHS it is practically Lore.
I had heard of Crohns but only in name. For me, it sounds like an exotic Crow (as in the bird). The NHS website was comical in its content (2012) making it sound as serious as the common cold and like it gives the sufferer a bit of a jippy tummy. The site pretty much says ‘Steroids’ for the solution but offers no real detail. The only person that would use the internet to search for a disease is either a sufferer, a family member/friend of the sufferer or a potential sufferer. The website was truly pathetic. And in hindsight should have been my first warning that my journey was not going to be easy because it did represent the NHS’s perception of Crohns.
On the third week I started to feel different again.
I was still unwell, still vomiting, still being subjected to invasive endoscopy after invasive endoscopy (that always restarted the bleeding) but I was starting to feel very disconnected. My body was beyond weak and my Consultant only turned up every four days with vague notes for nurses, who on more than one occasion, had admitted that they had no idea what they were doing.
On the third week, on a Sunday night – I had a reaction to the steroids they had been flooding into my body. I went from feeling quite unwell in a hospital ward to a duck farm. I wish I was kidding. I was officially overdosed on morphine and steroids and had a reaction that had me ‘tripping out’ and my heart pushed into tachycardia levels.
The next three days were erased completely. When I woke up I was still in pain but in a separate room that I did not recognise. The staff explained that I’d had a reaction to the steroids and when I asked if there were any ‘permanent’ side effects they evaded…un-smoothly.
Because I was missing three days – I asked to see my medical notes to ‘catch-up’ and they blamed the Morphine (not the Steroids- which they did tell my friends and family it was). Something was overdosed but I doubt I’ll ever get an honest answer from the notes.
On week 4, I was transferred to the Gastro Ward upstairs and put into a Ward with 5 other people. It did not last long.
A month of being sick, inactive had made getting to the toilet a desperate affair.
I thought I was doing ok.
I used the walls and grips, bedrails and my own IV (on wheels) to reach the bathroom but I think I must have frightened the other patients. I had lost weight (dropped from a health 12 stone to 7 – I’m 5’9) and knew I looked more dead than alive with dark shadows under my eyes and lines of pain that did not belong on a 25yr olds face. A nurse came into help me back to my bed and I was moved again.
But this time I panicked. From the ER to Station 3 to Station 4 to the Gastro Ward, Station 9 and now I was being moved elsewhere like a problem that no one wanted to deal with.
I was reassured by a nice nurse and the Cyclizine was a clever distraction on her part.
The next day the Consultant arrived with his entourage. He had thick eyebrows and ice blue eyes and I knew that he was dangerous by the way his staff cowered from him. He said that I was not getting better and [direct quote] – “I need to do a few things that will be painful but that is your problem – not mine. You will keep your emotions in check and you get on top of the pain”.
It sounded like a threat. I certainly took it as one. You know what someone on an IV without any hope has to lose? Nothing.
I asked to be discharged…..
It had been a month of being moved four times, a Consultant that barely turned up, staff who were clueless and the pain that never seemed to leave or even ebb.
My stats were getting lower and lower (my body weight was nearly half of what it was) and I knew at some point I might cross the line soon and reach a stage where I was not capable of leaving.
My friends and family were not supportive but I did not care. My best friend had turned around and said that they didn’t realise ‘it’ would last so long and that she had to ‘take a step back’ and my family had turned up once a week (always arriving late and leaving early and thinking that I hadn’t noticed).
Strangely it was the people that I never thought would be there in a crisis that had stepped up. People that I never thought would stand with me – Did stand with me. I knew within a month who my real friends were and it wasn’t the people who had once claimed to be family or, indeed, my actual family which had always been comically weak and apathetic.
If I was going to die – it was going to be at home. It was not going to be abandoned on a ward. I was not going to die like my Grandfather, bleeding to death in an understaffed hospital, screaming for hours alone with a perforated bowel. Or like my cousin, or my papa or the others that had been outright murdered through ignorance. I was going to die at home with a hot water bottle and a cat.
So I packed. Slowly. I was shaky and weak – it would have been funny if it wasn’t so damn obvious what the disease had done to my body. I eventually settled on a small backpack with my laptop, chargers and phone. I ditched my clothing (most of it was blood stained and unusable by now in any case).
And I left. Only to get to the end of a corridor where two large men were waiting. I remember calmly telling them “I just want to go. I am no danger to you. Don’t do this. This doesn’t make you a hero – just the bad guys attacking a sick underweight girl in a corridor”.
I didn’t expect them to stand down, indeed the larger one seemed excited for the entertainment, but the smaller one said “I don’t want to do this either. There’s a family room, right there, and I want you to go there until I can find out what is happening”.
I was reasonable and I knew they would try and undermine my mental health (I was a Wellbeing Worker after all and often knew how ignorance and perception worked outwidth my profession) so I went into the room. Thankfully they brought regular updates and sick bowls.
I’ll always remember that day- The sick bowels becoming redder and yellower by the hour as I waited for the head of the hospital to arrive.
Morbidly and with nothing else to amuse I took pictures. I realised that no one would know how I died. That I had spent over a month in a hospital, been overdosed, passed about Wards, switched consultants from normal > surgical > gastro and threatened with more pain by the latter, no cure and no consistency. No one would realise that in 2012, someone could be treated in a hospital worse than an animal at the vet.
No one would know. I think that was my greatest weakness – lack of public connection. It’s why I started writing everything down and taking morbid little pictures. It was my ‘Note’.
My family eventually turned up but were clueless. I was myself again as I told them that I had noticed their absence and all I wanted was to live on my own terms.
I had also never understood chronic pain. I don’t know how I can excuse my ignorance but I always thought, through limited experience, that pain could be adapted too. Chronic Pain cannot be. It can barely be dampened and quite frankly I have still (2016) never discovered a working painkiller.
When the head of hospital did turn up, I could see heavy notes in her hands. She looked pained as she said “I’ve only looked at the past two weeks and I cannot apologise enough but things will change. I promise you that”.
My notes, before 2012, were two sheets of double sided paper. One month in hospital and they needed their own wheelchair.
I never saw that Consultant during the remainder of my stay in hospital. No one did for an entire year. It turned out he’d been threatening all of his patients and his colleagues. His entire team and himself were banned until a formal investigation took place.
Two Months later I would be discharged from that hospital with discharge notes that clearly said Crohns and depression (the former which caused the latter). The discharge notes would be ignored and I would recieve no follow up until my next collapse.
My diagnosis would change from 2012 – 2016 to Crohns, Colitis, Heart Damage, Auto-Immune Failure, Liver Failure and Kidney Failure. There would never consistancy and I would never be spoken to like a human-being from NHS Ayrshire and Arran.
This is how my story begins.