I started writing this on 15 June 2011, but it’s taken until tonight to get to where I’ve got up to.
I’m going to attempt to bring it completely up to date by the weekend…wish me luck.
My memory is a bit all over the place and I’ve missed a lot out – mostly about drama with the bag. I hope I’ve covered most of it.
Well, here I am. It’s Wednesday 15 June 2011 and I am sat at home, watching This Morning. Yesterday I thought I was never getting out of hospital.
I got home about 11.30am today, and I’ve never been happier. I’m surrounded by things I know and love. I feel so safe and secure for the first time in weeks.
I went into hospital on Thursday 26 May 2011 at 7am, and the last time I remember looking at the clock it was 8.20am and they were just sorting my epidural. Next time I woke up it was blurry but it was about 1.30pm that day. I’d done it. I’d woken up. I was through it. I was relieved, and amazingly comfortable. I thought I’d be in agony, but only slight pain which they sorted. I spent four hours in recovery where they wheeled people in and out yet I stayed put. I was dying to see my parent’s.
Eventually I was taken to HDU where I saw my mum and dad for the first time. Even they were shocked at how good I seemed. I was with it and comfortable. I was happy to be talking, but was very sleepy.
Things took a down turn over the next few days. The epidural didn’t work properly, it was only working on one side of my body, which meant I could feel pain. It hurt to move and it hurt to breathe. At one point I just sobbed and screamed with it because even crying hurt.
Physiotherapy were quick to get in and start torturing me. They were giving me breathing exercises the day of the op. I thought they were barking mad, but they kept insisting. Over the next few days the pain got worse. It just wasn’t being sorted and I was suffering.
Physiotherapy kept visiting and kept making me walk and breathe. At one point it got too much and I begged to be let back into bed. Where I cried more. The Consultant at this point was a little baffled. He looked at my wound, and suggested 5 staples be removed, in case of infection and to let out any nasties. This carried on being looked after, but the pain carried on too. But my Consultant was talking about going home. So we geared up for it, but on the day of going home I couldn’t walk. I was in agony and dreading going home. I knew something wasn’t right. I wasn’t meant to dread going home, surely?!
So I was taken for a CT scan, and the wound was checked for any collections of liquid formed from the operation that might be infected, and there it was. The following day I was taken to x ray and a drain was fitted into my stomach which would release the liquid from inside. I was awake for the whole thing, and slightly fascinated by it all, apart from the painful part. I could have done without that bit. The Doctor there and then removed 730ml of toffee coloured gunk from my stomach. My god it was weird, but nice to know it was now out rather than in.
So there I began to feel slightly more human but was put on mega antibiotics, which made me feel like death. The next few days were a blur of sleeping, crying, trying to walk, trying to eat, seeing friends and family, sickness and generally feeling like I was in hell.
Over the next few days I watched my drain hoping for signs that it might have calmed down and that the output was reducing. During this time I was so tearful and down I didn’t want to be there anymore. The medical staff realised how down I was and suggested I go home for an afternoon with the family, just to get out and see home etc. I was over the moon to be allowed out for a few hours.
It was a Sunday afternoon I visited home. Mum and dad picked me up, and as soon as they’d arrived I wanted to get outside. The car journey felt great, especially having the window down and feeling the wind in my face. Once at home I settled into the sofa and it was just nice to be there, listening to mum and dad talking. The plan was to see if I could eat something as I hadn’t really been eating much. It all went a bit wrong though, because as I sat there I noticed a smell surrounding me, and getting stronger. I lifted my top and there it was, my first stoma bag leak. I had stupidly left my stoma kit at hospital so I had nothing with me. We had to go back to the hospital to change my bag and get cleaned up. I was mortified. My afternoon at home had been ruined. I felt dirty and fed up. After getting cleaned up and a new bag put on we went back home. I couldn’t relax though. I soon wanted to be back at the hospital. Eventually I couldn’t take it any longer, so we went back to the hospital. I got into the room and again my stoma bag had leaked. I remember that night going to bed, feeling so down and fed up. Then to make matters worse my bag for my drain leaked in my bed just as I was falling asleep. I couldn’t stop crying at this point, but the night nurses didn’t seem to understand why I was upset.
Over the next few days the Stoma nurse visited and we went over why I had had leaks. It’s likely it was because my stoma dipped inwards when I sat down and the bag itself wasn’t sitting flush again the skin. So to get over that, I started using adhesive and little pads to fill any gaps. It was working well, and I started changing the bag successfully on my own and leaks were very minimal. I knew I couldn’t leave a bag longer than 3 days, otherwise without fail there’d be a leak.
Things started looking positive though and eventually my drain was removed. It made me feel much more human. I went home a few more times too, just for a change of scene. I remember thinking my bag always smelt too, and I began to worry about it a lot. I was always told I was imagining it. I could smell it though.
Once I had shown I was eating, able to change my bag on my own, wasn’t being sick and had completed all physiotherapy’s checklist then I was allowed home. The only issue I had with my wound was it was open just at the bottom of my stomach, which had a vac dressing on it to speed the healing process up. The plan was to go back to hospital every few days and have the dressing changed. Unfortunately the machine was so faulty we were permanently at the hospital trying to get it to stop beeping. Eventually a nurse saw sense and gave me a different machine which gave me no trouble at all. I had a week with the vac which behaved itself. Because my attention was on the vac I had failed to notice I’d started being sick a lot. I’d also started to notice I couldn’t eat anything. I also wasn’t feeling anywhere near recovery yet everyone around me kept telling me I should be up and running by now, but then again everyone is slightly different. My bag was filling up with water too. I spoke to nurses about the sickness and they told me it was normal. I spoke to stoma nurses and they said eat more bulky foods. I lasted 14 days at home, but for most of that time I was being sick and on the sofa unable to move because I felt permanently sick.
29th June 2011 I went back into hospital – I arrived at Outpatients. Puked everywhere, the bag leaked and I collapsed in the bathroom. I was incredibly dehydrated. I was told it was likely I had adhesions or a blockage in my bowel. Surgery was their last option. So instead they put a central line in my neck and put me on a food drip. Apparently that can push through blockages and sort the problem. The sickness improved but I still didn’t feel well. I was miserable and fed up. My bag still wasn’t acting how it should either. I did notice though that I was OK getting in and out of bed now. My wound was a lot better. The vac was now off and I had a wound covered by a simple dressing. It was almost healed. I was very happy about this. The sickness stopped and eventually they took me off the food drip. I was eating soft meals and apparently improving. The Dr was pleased and said I could go home. I was terrified and begged him to be sure. I couldn’t go through that again.
I went home on Saturday 9 July 2011. That night my bag started to leak. It had me up until 3am leaking. Everything I tried didn’t work. I was exhausted. Everything seemed dirty. I was running out of supplies. I was so angry with the bag. I went to bed wrapped in a towel. I woke up covered in crap. I tried again with a new bag. An hour later it had leaked again. That afternoon I went to outpatients begging for help. They sorted me out and fitted me with a very basic bag with a belt. It worked. I was clean and dry! My stoma had shrunk and the bags I had at home didn’t suit it now. While I was there the nurse suggested to my mum I try anti depressants. I went home and tried to get on with recovery. But that didn’t happen, because I started being sick again. Monday 11 July 2011 I was back in hospital. The next day I had a CT scan and an apology from my Surgeon. He was sorry he hadn’t acted sooner. He thought it had been a few weeks since the op. Actually, it was 6.5 weeks. I also had an x ray which would show how well my rectum is healing. This involved drinking a liquid which would show up on the x ray. Unfortunately it had a laxative effect. My bag was filling up with water every half an hour. I was exhausted having to keep getting up to empty it. Wednesday 13 July 2011 my Surgeon confirmed the CT showed a kink behind my stoma, which had caused the bowel before the kink to extend. It was full of everything I’d eaten. All that was getting through was liquid. Which explains why I was feeling and being sick all the time. He then confirmed that my rectum was healed which had shown up on the x ray. He explained he’d spoken to another Surgeon and my Oncologist and they’d all agreed if he was going to operate to remove the kinked bowel, he might as well remove the stoma as the rectum is healed, which would mean I wouldn’t have to go back for stoma reversal too at a later date. The stoma was only in as a temporary measure, we just didn’t think it would be this quick. I asked when he’d operate expecting in a week or so, and he said “8am tomorrow” – OMG.
I started writing this on 15 June 2011, but it’s taken until tonight to get to where I’ve got up to.