Hi!
I've been a member here for a few months but haven't had the courage to post until today.
My name is Beth, I'm 26 from England.
I'm coming up to my first stomaversary next month on the 12th of December and I'm very nervous and feel emotional.
I have diagnosed mental health conditions prior to my surgery and have since been diagnosed with PTSD again from my hospital stay.
I'd like to tell my story.
Going back to last year, my symptoms first started on the 2nd of November 2021. I was on holiday and it just started with diarrhea. I thought I just had a bug and I'd be fine in a few days. But it wasn't, after 7 days of diarrhea and some sickness, I contacted my GP. I was sent for blood tests and did a stool sample but was told they were fine. I kept getting worse, I was going to the toilet 10 times a day, having a few accidents, and every time I ate I was sick. I got nowhere with my GP surgery.
It came to the end of November and I was really struggling now, I couldn't eat anything other than jelly and I was still being sick. I was so weak and couldn't do much and had so little energy. My stomach was so bloated and I had awful pains. It came to a weekend and I felt so much worse so I phoned 111. They were going to send an ambulance but I said I could get a lift to A&E. I got to A&E and explained what was happening and I felt the judgment straight away that I was in A&E for sickness and diarrhea but it had been going on for nearly 4 weeks. I was triaged by a very judgmental nurse. She asked why I had come to A&E for just what I had and I explained I had been sent by 111. The nurse told me, "Well, they always send people here that don't need to be here." She told me she wouldn't send me through to A&E and I could see an out-of-hours doctor but "they would just give me paracetamol and send me home and I'd have to wait 4 hours so I was best going home and phoning my GP." I went home crying and in absolute agony.
I was back and forth to my GP but still wasn't able to get a face-to-face appointment and was just spoken to over the phone. I was given different anti-sickness and diarrhea medication but nothing made a difference.
Then came the weekend of the 4th of December. I was so, so poorly and was going grey in the face but I was so scared to go to A&E again and be sent away. I couldn't get myself up the stairs and had to have assistance. I knew I was ill but never thought it was as bad as it was.
I started bleeding when going to the toilet and again called my GP on the 6th of December. I was spoken to on the phone again but this time they agreed to see me face to face. I had to get someone to take me and escort me in because I couldn't walk alone. The GP did my blood pressure and it was low and he decided I needed to go to A&E just for some fluids and he would refer me to a gastroenterologist.
I never saw that gastroenterologist. I went to A&E, I begged for my mum to stay with me because I felt too unwell to get around by myself but it was refused for COVID restrictions. I was triaged and as soon as I walked in the room I threw up everywhere. This nurse said I would be taken straight to a room. I was confined to a room in case I had anything catchy. I couldn't stop being sick and going to the toilet.
Now from here, I don't remember much.
I know I was taken to a ward and I was told I had inflammation and would need steroids and fluids.
I still couldn't stop going to the toilet and being sick and it was using all of my energy. It came to the 11th of December, I was going downhill and I was told I was on the verge of sepsis and I could no longer leave my bed. I was told I had to use a bedpan and had a catheter put in. In the middle of the night, I was taken down for a CT and abdominal X-ray. I was then woken up at 5 am by surgeons around my bed telling me I had a perforated bowel and I needed emergency surgery straight away and would have a temporary stoma.
I was in absolute bits.
I was taken down for surgery and it was worse than they thought. My large bowel was perforated in several places, I had gangrene and when they tried to remove my bowel it literally exploded and disintegrated it was so diseased. My stoma would no longer be temporary. I had my whole bowel and most of my rectum removed except for my rectal stump.
I don't remember coming out of surgery, I was in intensive care for a few days and don't remember much from there. All I remember is meeting a stoma nurse for the first time and being told I would be out for Christmas. Initially, I was told I was doing well. However, at some point, I went downhill again, I'm not sure on the date because I was so out of it.
I was in hospital for Christmas but I don't remember it at all. On Boxing Day, which again I don't remember, I just know this from being told after, they found out I had a blood infection and an infection in my original incision and I went back to surgery.
They couldn't stitch me back up and instead I had a vac machine applied to drain my stomach and close the wound using negative pressure. My stoma retracted and they couldn't get it to stay up.
I was kept asleep after surgery and put on a ventilator and in an induced coma in intensive care again where I spent New Year. In January I came off the ventilator and then out of intensive care.
The only memory I have from intensive care is having hallucinations (intensive care delirium) due to infections and morphine.
When I was in intensive care they noticed my pupils were different sizes. They queried a stroke and did a head CT, thankfully it wasn't. But it's only starting to be investigated now.
I don't remember the ward to begin with but around mid-January, I started to get back to me and can remember things.
I was getting better but still so poorly. I was going down to theatre between every few days to eventually a week in between.
My stoma was still retracted, stoma nurses couldn't find the right bag for me and I was having leaks several times a day and waking up every morning covered in poo.
I slowly started being introduced to foods after about a month of just being fed through a line in my neck. I was on soup and ice cream for a while then I started proper food and still being fed through my neck.
They decided to start me doing physio, I had been in bed from the 11th of December until now around mid-January. It was very slow, to begin with, I just started sitting up and moving my limbs. At one stage I wasn't even able to move my own limbs.
As I started moving my arms and legs I noticed my right leg and foot didn't feel right. I kept telling doctors and nurses but they did nothing.
One Friday evening I started to develop breathing difficulties, I thought it was just a panic attack but when the nurse came over and did my oxygen it had dropped a lot. They pressed the emergency button and I had on-call doctors come and tell me I might need to go back to intensive care because they thought I had a blood clot in my lungs. Thankfully I didn't and it was an air bubble in my lungs which oxygen fixed.
Then a few days later I was told I had caught COVID and was going to be put in isolation with 5 others with COVID. This time was awful, the nurses didn't come in the room as often, I wasn't allowed to see family at all (I was allowed occasional visits from my mum before this because I had been so unwell) and I wasn't allowed visits from the stoma nurse.
I was constantly leaking and the staff didn't want to keep changing my bag (I still hadn't had training) so just kept sticking extenders around so I was so sore.
I wasn't on my proper mental health medication so I was having constant panic attacks.
Then the worst things happened.
I had been next to this poorly older lady before we both got moved to the COVID bay because we both had COVID. I knew she was poorly but didn't know how bad until I woke up in the middle of the night to them removing her body. She passed away in the night and I was heartbroken. The following morning another lady was put in her bed space, that evening she also passed. But this time I heard it all as her family cried out and when they were preparing her body one of the nurses didn't fully close a curtain and I saw her laying there. I can't get that image out of my head.
About a week later I was moved out of COVID isolation into another bay. I was put in the corner of the room next to a closed curtain. I thought nothing of it, it happened frequently if they had visitors or a doctor but the curtain didn't come open. Then came 2 visitors who went inside and I could hear crying. They left and then they came to collect her body. I was so upset again.
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Check out our 4 necessities before getting back on the job, and our other workplace tips.