Holiday from hell

My first week in Cornwall was amazing. Me, Hubby and the kids spent the week near Porthleven along with all Hubby’s family in a big house with its own pool and hot tub. The kids had a great time with their cousins, we celebrated Big Girl’s birthday, went to the beach, ate together, played games in the evening and just generally had a wonderful time. It was the holiday I had dared to dream about while I was in hospital amd I couldn’t believe I was well enough to enjoy it. No, I wasn’t able to eat and drink but that was a small price to pay to be making memories with my loved ones.

At the end of the week we packed up the car and drove to St Ives where we had booked a fisherman’s cottage one minute from the beach with my parents. My sister and her husband would be staying nearby and Big Girl’s boyfriend and his family were also staying in St Ives at the same time. I’m good friends with his Mum so I was really looking forward to having a great second week with even more of my favourite people. 

On Saturday we spent the day on the beach and then we all went out for dinner in the evening. When I was getting ready for dinner I wasn’t feeling too great and when I put on my trousers they felt incredibly tight despite hanging off me days before. I knew this meant that my stomach was distended which can be an early sign of an obstruction but I just hoped everything would be ok and it would all settle down. Unfortunately it didn’t, and I woke up in the early hours of Sunday morning vomiting. Initially I was able to make it to the bathroom next door but as the hours went on I couldn’t even get out of bed. I didn’t have a sick bowl so was throwing up into saucepans 😂 

On Sunday morning Hubby said he was taking me to hospital amd normally I would protest and say “I’ll be fine” but I knew that on this occasion I wouldn’t be fine so just nodded my agreement. If you’ve been to St Ives you’ll know it’s full of narrow, cobbled streets with higgledy, piggledy cottages, most with no parking. The beauty of our cottage was that it was seconds from the beach but the downside was that it had two flights of stairs that were as steep as Everest and we had had to park our cars in a car park 15 minutes walk away. Dad went to fetch his car and by the time he got it outside the cottage I was barely able to stand. And of course I was in a bedroom on the top floor of the cottage so Hubby and Dad had to half carry, half drag me down the two flights of stairs and into the back of the car. I was laid out along the back seat throwing up continuously into the saucepans as we drove the 45 minutes from St Ives to the Royal Cornwall Hospital in Truro. 

When we got there I was barely with it but I know we were triaged by a nurse in the car park by the Emergency Department. All I remember is her saying that I needed to be put on a stretcher and taken to resus because I was so unwell. I have some vague memories of them cutting my pjs off me in resus because I was vomiting like the girl in the Exorcist and I was covered in puke but I remember very little else. I know that while I was in resus I began vomiting faeces- yes I was literally throwing up poo from my mouth and yes it really it as disgusting as you think it would be. And I didn’t stop vomiting faeces for 6 days straight. It just so happens that I don’t have very much recollection of these 6 days. I think I was so dreadfully unwell that my brain has shut out the memories because they were so traumatic. I know that from the ED I went to a ward called Theatre Direct and I was there for 4 or 5 days. Hubby wasn’t allowed to visit on that ward and I was so poorly I couldn’t phone or text him so he was reliant on updates from the nurses when he rang each day. Apparently during this time I had been for a CT scan, which I have no recollection of, and was having to have bed baths from the nursing staff as I couldn’t even lift my head off the pillow. The vomiting was so violent it caused me to tear my stomach muscles and as well as dealing with this I also had diahorrea like I had never experienced before. I had absolutely no control over my bowels and was basically shitting the bed constantly. Sometimes the nurses were having to change the sheets and the pads every 15 minutes. Shit was just pouring out of me from everywhere possible. And to top things off my body decided now would be a good time for me to have a period! There was no way this should have happened as I have an injection every three months to control my endometriosis that puts my body into menopause. In the 18 months I’ve been having the injection I’ve never had so much as spotting but for some reason I had a full blown period. I remember one of the junior doctors asking the surgeon if they should call the gynaecology team and his response was “she’s already got enough going off without the gynae team getting involved!” 😂 If there was a hole there was something pouring out of it- it was truely awful. 

After 5 days I was transferred from the Theatre Direct Ward to the Gastro and Liver Unit. This was because they had decided that my symptoms were as a result of a serious bowel infection called C Diff and I wouldn’t need surgical intervention.

 According to the NHS website…

…you can see that I tick quite a few of the boxes. I had been on antibiotics and antifungals for my line infection in June/July, had obviously been in hospital for months, have IBD and a weakened immune system, take PPI’s and have had surgery on my digestive system. The only thing going in my favour was my age! 

Amd although antibiotics are the cause of the infection they are also the treatment for the infection. Only I was allergic to the ones I needed to have. Typical! They tried giving me oral antibiotics but I was still being sick despite having an NG tube (a tube down your nose and throat into your stomach to drain off all the fluid, or in my case, faeces) so that was a bit of a no go. Talking of the NG tube, the surgeon that put it in in the ED was so rough that she made my nose pour with blood. Having an NG tube put in is one thing I really hate. You have to drink water and swallow to help the tube go down your throat as they feed it in through your nose and it’s uncomfortable and unpleasant but when it’s in and they can drain off the crap in your stomach the relief is amazing. 

Going back to the C Diff infection- they had started me on two IV antibiotics to see if they would help but the one I really needed to have was Vancomycin and I had had allergic reaction to it when they had tried to give it me only a few months ago in Nottingham. So after much to-ing and fro-ing with the microbiology department it was decided that they would give it to me as as enema instead of IV. I was worried I would still have a reaction to it but the microbiology doctors were convinced I would be fine. After much discussion with the gastro consultant and assurances that he would remain on the ward when the first dose was given I consented.

So they inserted a catheter up my bottom and then put the antibiotics up that. I had to lie for 30 minutes with the catheter in situ which wasn’t the most pleasant of experiences but I was so unwell I was willing to try anything. Luckily I didn’t have any adverse reaction to the antibiotic so they repeated this lovely experience four times every day. By this time the weeks holiday had come to an end and Big Fella travelled back home with my parents while Big Girl came back with her boyfriend and his family. Hubby was staying in Cornwall to be near me as he was too worried to leave me there alone and to be honest I would have been terrified to be hundreds of miles away from home all by myself. 

After being in hospital for 10 days I wasn’t getting any better so the consultant said that I would probably need a faecal transplant. Faecal microbiota transplant (FMT) is the transfer of the gut bacteria and other components in faeces from a screened healthy donor to an individual with a specific disease with the aim of treating the disease- in my case, C Diff. FMT can be administered either through an NG tube or small bowel by colonoscopy or as a rectal enema. Further info on FMT can be found here. The consultant was going to get in touch with the UK’s only faecal transplant facility in Birmingham to get the ball rolling. 

Throughout my time in hospital in Cornwall Hubby had been in touch with my gastro team on F22 in Nottingham. Initially they didn’t have a bed for me but I think they were starting to disagree with the direction my treatment was heading in so on Thursday which was day 12 Dr B decided I needed to be transferred up to QMC in Nottingham and it needed to happen that day. Because I still very unwell I needed to be transferred by ambulance with a paramedic which Cornwall said would take 48 hours to arrange. The team in Nottingham told them that they finally had a bed for me but couldn’t hold it for 48 hours and again that the transfer needed to happen that day. Eventually after the matron in Cornwall got involved an ambulance was booked for 4.30pm that day. I was so pleased to be heading home (or at least to my second home!) as I hated being so far away. 

But 4.30pm came and went and there was no sign of the ambulance…5.30pm came and went and Hubby asked where it was and was told it was stuck in traffic on the A30- the only road in and out of Cornwall. At 6.30pm the paramedics arrived on the ward and got a handover from the nurses. They had travelled from Bristol and apparently the traffic was awful so it didn’t bode well for our journey north. I was still vomiting and unable to control my bowels so the paramedics loaded up on inco pads, tena pads, sick bowls, spare sheets etc and then it was time to leave. Hubby was staying the night in Truro as he needed to get some work done that evening and the following day but would be heading back to Nottingham the following night. 

The journey back to Nottingham took just over 6 hours and it was an awful journey. The trolley in an ambulance is not designed for comfort- they are rock hard and very narrow which makes getting comfortable very difficult. I was hooked up to a blood pressure cuff, finger probe for my SATS and heart rate and also wired up to ecg monitoring for my heart so this made it even harder to get comfy. Plus as I was vomiting I had to be on my side so I didn’t choke. During the day there had also been a couple of occasions where I had passed out in the bed when I had tried to sit up so the paramedic was very wary of me moving around too much. I had two more episodes of this happening on the ambulance while we travelling- just sitting up slightly to be sick caused me to lose consciousness for about 10 seconds which was a bit worrying. I have to say the two paramedics were bloody amazing and looked after me so well. After they had got me back to Nottingham they were then driving back to Bristol so it was a very long shift for them both.

Just after midnight we arrived in Nottingham and I was taken up to F22. The relief at seeing nurses I knew and being back ‘home’ was immense. They had to PAT slide me from one bed to another as I was so weak I couldn’t even transfer myself. Once they’d got me settled in bed the tests began- they did my obs (blood pressure, temperature, blood saturation and pulse rate), took blood from my arm and also from my Hickman line as they wanted to check I hadn’t picked up any infection in my line while in hospital in Cornwall. They took a stool sample to test for C Diff and other bugs and took a urine sample from the catheter. I had an ‘accident’ and while they were cleaning me up the nurse said my bottom was red raw and looked like I had burns. They got me a cream called Flamozine prescribed to help the skin heal. Until then they had only been using sudocream in Cornwall but the flamozine cream has silver sulfadiazine in it which is antibacterial and prevents infections and amazingly within 2 days my skin was almost healed. 

In the morning the doctors did their ward round. Dr B does alternate months on the ward and September was his month off the ward so it was Dr L, the lady consultant. She said they had requested the ct scans and all the other information from Cornwall and that once they had that and all the test results back they would be in a better position to know what was going on. The blood tests showed that my potassium levels were dangerously low so they had to carry out a few ECG tests to check that my heart hadn’t been damaged. Instead of having my TPN feed I had to have fluids with potassium in them to raise my levels quickly. The nurses weighed me and I had lost 9kg (roughly 1.5 stone) in the 12 days I was in hospital in Cornwall! The test for C Diff had come back negative so that would explain why the antibiotics they were pumping me full of in Cornwall weren’t working and the CT scan showed that adhesions had caused my bowel to obstruct. So I had never had C Diff and had received the wrong treatment in Cornwall. The consultant told me that C Diff bugs live in the large intestine and I obviously don’t have one which is why they had begun questioning the treatment plan of the Cornish doctors. 

With obstructions it’s a case of waiting for them to settle down (or surgery if it becomes life threatening) so I just needed to rest and allow by body to heal. Over the weekend I began feeling a little bit better and got out of bed for the first time in three weeks. I managed the three steps to the bathroom and was able to use the toilet. It felt amazing that I was starting to get some control of my bowels and no longer shitting the bed! On Sunday I had a bowl of soup and it was the best bowl of soup ever! Up to this point all I was able to manage was sips of drinks and ice lollies so tolerating soup and not throwing it back up was a big step. 

Once my potassium levels had stabilised they were able to start me on my TPN again and getting regular calories into me made me start to feel stronger. On Monday the consultant was happy for my catheter to be removed and on Tuesday the NG tube came out. With both of those things out I was starting to feel human again. 

Oh yes, I have got pink hair- I dyed it during the first week of my holiday. I had been wanting to do it for ages but just was never well enough. 

I continued to improve and began taking little walks around the ward. Just a few minutes of walking would leave me exhausted and when I had my first shower I needed to lie down for a few hours afterwards! My body has been left so weak by this latest episode and it’s going to take quite some time to build myself back up. I think my wheelchair will be getting a few outings over the coming weeks! 

On Wednesday the doctors were happy enough with my progress to talk about discharging me the following day. I was so excited to finally be getting out of hospital but when I told Hubby he told me I wouldn’t be coming home. Big Girl had tested positive for Covid so he didn’t want me coming home until her isolation period had ended. At first I was frustrated as all I wanted to do was hug my kids as I hadn’t seen them for 3.5 weeks other than on FaceTime but when I was talking about it with one of the nurses and she told me “if you got Covid right now I reckon it would finish you off” I realised that Hubby was right. So I rang Mum and Dad to see if I could stay at theirs and of course they said yes. 

And although I was pleased that I was well enough to go home I expressed my concern to the ward sister and doctor about the fact that I’m still not considered enough of an emergency to have surgery any time soon. They’re only able to carry out emergency surgeries at the moment but these bowel obstructions keep happening and each time they’re getting more and more severe. I WILL have another obstruction- it could be in days or weeks but it will happen again. This recent one proves that even refraining from eating and drinking won’t stop them from happening and I’m absolutely terrified of the next one. This one was so awful and at one point I honestly thought I was going to die so the thought of another one happening is really scary. The ward sister said that she would speak to Mr E, the surgeon, when he returns from annual leave. The gastro team all agree that I can’t be left to go on like this and that I desperately need the surgery but they don’t have any influence over how the theatre hours are allocated. 

My real fear is that at one point in the future I will obstruct and it will become an emergency and then one of the surgeons who has refused to operate on me because they don’t feel confident in handling my complicated insides will be the oncall surgeon and have no choice but to operate. And then I will end up in a mess. The surgery needs to be planned with the only surgeon in the hospital willing to operate on me (especially if they’re going to whip my ovaries out at the same time) to give me the best chance of a positive outcome. I’m also now frightened to leave Nottingham because I don’t want to end up in a hospital away from home that has no idea how to treat someone with such a complicated history. I was saying this to one of the deputy sisters on the ward and she said that it’s probably a good idea to stay in Nottingham until I have surgery. So yet again this illness has succeeded in making my world smaller and smaller. 

It’s really hard not to be bitter about how much the illness has taken from me and how it continues to dominate my life but I’m trying desperately to look for the good things in life. I could be angry that my holiday was ruined but I choose to instead be grateful that I had an amazing first week. It’s not always easy but one of the few things I  have control over is my attitude and how I react to life and I choose to be happy. If I allowed myself to be angry and frightened I think I would end up having a breakdown so instead I’m grateful for what I can do instead of what I can’t.