Mum got me dressed and we packed the bag
knowing how poorly I felt I knew I’d be kept it. Mum dropped me at the door and she went to park the car, I checked in and went straight to the toilet I heard my name being called but was stuck in the bathroom and mum was parking up. I eventually came out and was so weak each step on my crutches were an effort, I made it to the room and zonked out on the chair. The dr took one look and knew how poorly I was my heart rate was through the roof I was dehydrated, looked grey, was sweating and couldn’t even get on to the examination bed. Even talking was an effort and those who know me, know I have no problem talking normally!! I was being admitted but no beds to be had in the hospital. As the hospital was full and I was pretty poorly at this stage and my heart rate 189 BPM I was took through to A&E to be monitored. Here I spent 2 nights on a black hospital trolley in a cubicle hooked up to IV fluids and heart monitor, my worst nightmare as I couldn’t run free for the toilet as I was wired up. I had to call the nurse and we know how busy they can be, I became that desperate I unhooked myself from the heart monitor and muted my IV drip and took it with me to the bathroom with one crutch in hand, not ideal but needs must. Then went back and hooked myself back up, I explained to the nurses and they fully understood. Then came the sickness poor mum couldn’t get me enough bowls quick enough. I saw that many Drs and was to weak to explain things so just showed them my report from my sigmoidoscopy the rest they could see from just looking at me. I was waiting for a bed and was down as urgent, mum left late that night and as the hospital is being refurbished we had no signal but my phone was the last thing on my mind. All night someone checked on me as my temperature was spiking. But some good news I could start IV steroids as my current health with my bowel was in such a state more so than my knee so it was agreed to start the steroids. I do believe a gastro consultant came to see me but I was stuck in the toilet for to long so they left, they asked the nurse for a stool sample from me, so I gave one, to be told by a shocked nurse ‘no stool to examine just blood so we can’t send it off!’
Late Tuesday afternoon I get wheeled off to a ward, finally a proper bed it felt so good to be on a bed rather than a trolley, here I get assessed again to decide what ward I need to go on, although we know gastro or surgery they needed to decided. Here we have 5 patients to a bay a toilet and a nurses station in your bay. 5 people needing one loo…..
Here I saw a lovely gastro consultant who sat down and explained everything with me, he explained about the drug vedolizumab & a brief chat about surgery, we agreed I’d try the drug. He also wanted to book me in for the camera down my throat.
I finally get a bed on a Gastro ward and see a nurse who I knew from a previous hospital, we chatted and I felt more relaxed after the chat. Here I was back and forth to the shared bathroom, one patient even asked me if I was contagious due to the amount of toilet trips. I’d often wake up in a confused state, I blame the medication! Here I had the infusion vedolizumab and fair play although she wasn’t my dedicated nurse but the nurse I knew she administered it to me and sat with me the whole half hour of infusion to monitor me and after, as i had a reaction previously to Infliximab. I had the infusion and all was good regarding the infusion, until the next morning I woke to be told by the nurse you have chicken pox! What followed was some banter and laughter with the nurses and fellow patients! Much needed laughter to.
We had a laugh and my drip stand had a danger sign on it! A dr was called and I didn’t actually have chicken pox but it was a reaction to the infusion! Next A day later it was Sunday and I felt so poorly I remember using my hospital table to rest my head on as I was in so much pain – a Dr was called yet again and they stuck a needle into my main artery on my wrist to check my blood gases. Results back and they ‘think’ I have a blood clot on my lung and needed a large does of Clexane to try disperse it. Baring in mind my whole hospital stay I’d refused Clexane previously as I was bleeding so badly from the bowel I was concerned this would make matters even worse and I told the Drs and nurses this! Of course they couldn’t agree or disagree – it was my choice a risky choice but no way could I of coped if I started bleeding even more from the bowel. I stupidly declined the clexane until I had the CT scan to determine 100% I remember getting up to go to the bathroom again and blood was everywhere I had no choice but to call the nurse as i was so lightheaded from the loss and no food, no way could I have got to the floor to clear this up and my bad knee to. Embarrassment crossed me and I called a nurse to the bathroom. She was very professional and it was noted in my notes the loss and cleared up.
I was then took for this CT scan to look for a blood clot, I remember being in the lift and needing the toilet it was horrendous and the porter was kindly talking to me and asking about my unusual tattoo baring in mind I don’t have one tattoo! He meant the dots on my arm from when I came out in a rash and they were monitoring me!
Toilet done and CT scan done, result NO blood clot. I was after this moved to a side ward with my own toilet it was heaven having had to share a toilet for the past week. Bed to Toilet was now easier than ever but more importantly it was closer . But sadly I was getting weaker and weaker by the day. Next thing I knew a surgeon came in shook my hand and said its surgery for you, what followed was a blur but deep down I knew we’d exhausted all avenues of treatment and surgery was the only option left, any questions – ‘yes dr can you take me now I can’t cope any longer’. I’d be took down to theatre the following morning and a stoma nurse would come see me and mark me up. I remember asking the nurse to shut the blinds in my en suite room and Open all the windows wide and I just sprawled on the bed in a world of blur. I didn’t even tell my parents until hours later. When they came that night with my best friend they didn’t recognise me, I can honestly say I’ve never in my life felt so poorly and had no fight me. I was to weak to even speak at this point.
I was in the toilet again and the door knocked, it was the stoma nurse, I won’t be a minute I shouted, more like 20 minutes! I almost crawled out of the bathroom to the bed, your bad aren’t you Gemma. She marked me up , gave me a booklet and her talking was going in one ear and out the other. Any questions – no just get it over and done with please.