At the beginning of June I was admitted yet again to QMC in Nottingham with huge amounts of pain, my bowels not working properly and just feeling generally unwell. I had only been home a couple of weeks since the admission in May but I had been feeling so rubbish most of my time had been spent in bed. I had tried everything I could to stay at home but the pain had become so bad I was barely able to stand or take a few steps on my own.
I had expected to maybe be in for a week or two to get stronger pain meds and get back on my feet but I ended up being in for almost a month. They put me on morphine injections and ketamine but then stopped them when my heart rate dropped to 30 beats per minute and my breathing to 7 breaths a minute. They were so worried about me that they ended up calling the critical care doctor and there was talk of moving me to intensive care. They were doing my observations every 15 minutes and were amazed that I wasn’t more unwell given how high I was scoring on my obs. To be honest the only ill effect I felt was that every time I stood up I almost passed out which made going to the loo a bit difficult, but if I was lying in bed I felt fine.
Without the morphine and ketamine the pain was unbearable as all I was having was paracetamol. I was in so much pain I begged Hubby to take me home so I could self medicate with painkillers at home but he knew that if I discharged myself with such low heart and respiration rates it could be dangerous. In the end the doctors agreed to put me on a low dose of ketamine to take the edge off things but I was closely monitored every time a dose was given.
During this time the heatwave hit the UK and the ward, being on the top floor of the hospital, turned into a sauna. It was awful. To make things worse I was in so much pain, going to the toilet every half an hour and it felt like razor blades were passing through my bowels. I didn’t eat or drink a thing or over a week. I didn’t even take any medication orally as even just a few sips of water to take the tablets would set the pain off so everything had to be given IV.
Initially after about 10 days things started to settle down but then a couple of days later, when I had been in about 2 weeks the pain really started up again around lunchtime. After a couple of hours it was so intense I was screaming in pain. I was sent for an emergency CT scan but because I have had so many CT scans in the last few months they are worried about my radiation levels so the radiographer decided it was safer to do an MRI scan instead. At this point I couldn’t move because I was in agony so the team there had to transfer me from the bed to the scanner.
The scan showed that part of my small bowel was very inflamed and stretched so they called the surgeons to see me. I was terrified that I would end up needing emergency surgery, especially as it was during the junior doctor strike. In a way though that turned out to be a blessing as it was the surgical consultant that was covering night shift so I was in good hands. He explained that my bowel was at risk of rupturing and that they would keep a close eye on me. They didn’t want to take me into surgery if they didn’t have to (and let’s face it, other than Mr E nobody else in Nottingham wanted to open me up!) and I didn’t want surgery if I didn’t need it.
They put an NJ tube in to release the pressure in my bowel but that night was one of the worst nights of my life. Other than after surgery I have never felt pain like it. But the following days it started to settle down a bit. Because the pain had been so bad they started the up morphine injections again to supplement the low dose of ketamine I was having. Luckily this time my heart rate was ok. That weekend was Fathers Day so Hubby and the kids popped in but I was so poorly I didn’t even send my own Dad a card. I know he understands but he’s such a wonderful, supportive Dad who is always there to help me that I felt really guilty.
A few days after this awful episode Mr E, the surgeon, popped up to the ward and gave me a date for surgery! He scheduled me in for 21st July but it would mean going back to a stoma. Part of me thinks that it could give me some quality of life back but part of me is absolutely terrified that I will end up with a nightmare stoma and then I will have that to manage on top of everything else I already have to deal with. What I do know is that I can’t carry on like this. Spending 50% of my life in hospital is no way to live and without surgery nothing will change.
After 3 weeks in I was starting to feel like I had turned a corner which was good as I had 3 outpatient appointments I needed to attend. The first was for a Dexa scan to check my bone density. The second was with the chronic pain team and the third was with a surgeon at St Marks.
I managed to get to the bone scan easily as it was at the treatment centre across the road from the hospital. Because of the endometriosis I get an injection that puts me into menopause but that can affect your bones, as can the steroids I’m constantly on and off. When I last had a bone density scan a couple of years it showed I had osteopenia, the precursor to osteoporosis, so they’re keen to keep an eye on it. I will get the results when I see the gynaecology consultant at the end of July.
I had to go out to the appointment with the pain team as that was based at a GP surgery about 15 minutes away from the hospital which meant getting dressed for the first in weeks! There I saw a Professor who specialises in chronic pain and a pain practitioner that specialises in CBT. I wanted to see if there was anything they could do to help me manage my pain while waiting for surgery that might keep me at home more. We had a long discussion about the medication I’m currently taking and how best to manage flare ups. The prof suggested that we change my pain meds as he thinks over the years I’ve become tolerant to the sevredol and oramorph. He suggested that we try hydramorohine which isn’t one that I had heard of. Apparently it’s quite old school and not used very much anymore but he thinks it could be worth a try. He said that given the recent issues I had with the bradycardia (low heart rate) it would be best to change the meds over while I’m an inpatient so I can be monitored. He asked me to update my gastro team and ask the consultant to get in touch with him so he could advise him of the doses etc
The last appointment scheduled was with one of the surgeons at St Marks. Obviously we had already seen a St Marks surgeon privately a few months ago so I was going to cancel this appointment but Hubby said it was worth going because “you just never know”. I’m so bloody glad I listened to him. Hubby was given permission to take me out of hospital the night before my appointment and we drove down to Hertfordshire and stayed overnight with friends. As the appointment was quite early in the morning we didn’t fancy battling rush hour traffic from Nottingham to London plus it was a good excuse to catch up with friends that we hadn’t seen in a long time.
Since I was last at St Marks years ago it has moved from its base at Northwick Park hospital (NPH) in Harrow to Central Middlesex hospital (CMH) in Acton. They moved at the start of covid as NPH was the covid hotspot of north London. CMH doesn’t have an A&E department so it meant they weren’t getting the covid patients admitted and so St Marks could continue doing elective surgeries and seeing their patients.
We got there with plenty of time and I paid for a couple of hours of car parking. St Marks might be in a new shiny hospital but some things don’t change and we ended up waiting nearly 2 hours to be seen. Hubby had to pop out to get a new parking ticket and I knew it would be Sod’s Law that the minute he left they would call my name and that’s exactly what happened. I text him to tell him to run and I went in to see the surgeon.
I met Mr F, along with 2 surgeons from Brazil and one from Spain that were there doing training and learning techniques at St Marks to take back to their home countries. I explained that my circumstances and that my surgeon in Nottingham had referred me for a second opinion and it turns out that Mr F knows Mr E- the bowel surgery community is obviously small! Hubby arrived and we talked about some of the challenges I have been facing, the constant admissions, reoccurring obstructions, the pain, the fatigue, the fact that I have no quality of life and then Mr F laid out 4 different surgical options, one of which didn’t involve a stoma!
He said that without seeing the CT and MRI scans from Nottingham he couldn’t say which surgical option would be most appropriate and that he would also want to admit be at St Marks to carry out further tests himself. He said he would like to do this within a number of weeks but the way the NHS waiting lists are at the moment it might be more like months. He asked me what I thought surgery might do for me or what I expected and I told him that I wasn’t daft, I didn’t expect miracles but that I just don’t want to live 50% of my life in hospital. He said most people expect him to ‘fix them’ and make them ‘normal’ again but that I was realistic and setting the bar so low that he felt he couldn’t fail to help.
When we left the appointment Hubby and I hugged each other and cried. Mr F had listened to us and told us he thought he could help and for the first time in years we felt like we had some hope. Yes, I had a surgery date in Nottingham but it was for a surgery I didn’t really want but felt I now had no choice but to go for. This appointment offered me the opportunity of surgery that could improve my life but possibly without the need to have to have a stoma again.
We drove back to Nottingham and I messaged family and friends but also at the back of mind I was thinking ‘don’t get too excited, something might go wrong’. At every stage of this bumpy ride with my health if there is a possibility of a complication or a 1% chance that something might happen then it has happened to me. So I’m thinking that although we have been given a glimmer of hope that it could all be taken away at any moment.
I spent the next couple of days back in hospital in Nottingham but because it was a weekend they didn’t want to make the changes to my pain meds as there wouldn’t be a doctor on the ward to monitor it. So on Mondays ward round I asked if we would be able to delay the changes for a day or two as I wanted to be able to go out on leave as Big Fella had his prom that evening and Big Girl had hers on Wednesday. Then later in the week it was Big Fella’s birthday and the last 3 birthdays I was in hospital with last year me being so unwell with sepsis that I was hallucinating and needed to go down to theatre to get a temporary central line inserted so I didn’t even get to see him. I didn’t want to do that again and I explained that I needed to be at home for these events for the sake of my mental health.
Usually my gastro consultant is really understanding and is the first person to say I need to get home when I can, given how much time I spend in hospital but on this occasion he was really short with me. He said that once they changed the meds over I wouldn’t be able to leave the ward for 24 hours and that I “couldn’t just come and go as I pleased”. I was so shocked cause he’s never been like this before so I asked if I could go home and be readmitted in a week or twos time but he said there were real pressures on the beds and he didn’t know if he would be able to get me back in. For me getting home for the proms and the birthday was more important than changing my meds so I told him to just discharge me. This illness has taken so much away from me and I wasn’t prepared to miss these events. For example, Big Girl went prom dress shopping with her friend because I was in hospital and it was the day I was really poorly and had to have the MRI scan. When I checked my phone the next day there were 25 missed FaceTime calls from her where she had called to show me her trying on the dresses. My heart broke when I imagined her calling and getting no answer.
So I rang my parents who came and picked me up and 2 hours after the ward round I was packed up and headed home. Was I 100% ready to go home? No. Would I do it again? Absolutely. Being at home to watch the kids get dressed up for their proms, to take photos, to be in the photos and just make those memories with them was priceless.
I would love to share photos of Big Fella in his suit and Big Girl in her dress as they both looked amazing but I value their privacy and like to protect their anonymity.
Going home does mean that the GP will now have to manage the medication change over and I’m sure it will be anything but smooth getting it done but I don’t care cause I was home for these important events, milestones that I would never get back if I missed them. So I have a GP appointment booked for 2 weeks time (I know I actually managed to get a GP appointment by some miracle!) and hopefully we can work out a plan to try this new painkiller.
I had been home for a day when I got a phonecall from a number I didn’t recognise. Normally I don’t answer the phone but something made me take this call and I’m so glad I did. It was the St Marks admission team calling to see if I was able to go down and be admitted for tests in a weeks time! I could hardly believe it as I had honestly thought it would take months to be seen and of course I said yes!
So that’s where I am right now. I’m sat on my bed, on the ward at St Marks writing this blog post. I’ve been here since Tuesday and so far nothing has happened other than an ECG and blood tests but I’m here and that’s all that matters. I have no idea what tests they plan on doing or how long I’m going to be in but I don’t care. I’m in the UK’s specialist bowel hospital, under one of the top bowel surgeons in Europe, if not the world, and he’s going to try to make a plan to fix me. And that gives me cause for hope.
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