Back again

I’m back in hospital. If you don’t count the 1 day I spent in A&E in Cornwall I’ve managed to stay out of hospital for about 8 weeks, which for me isn’t bad. But all that changed on Tuesday. 

I’d been getting really bad pains since Friday and when I say bad pain, I mean like 10/10, take your breath away kinda pain. I’m used to being in pain and like to think I’m pretty good at dealing with it but those few days were absolutely awful and completely floored me. The pain was different to normal though and I was hoping that it might stop as suddenly as it started so I spent the weekend gritting my teeth trying to just get through it. 

The only way I can describe the pain is to say that it was like having labour contractions; the pain came on, it’s absolute agony and is so intense and then it goes off again. It can last a few seconds or minutes and the ‘contractions’ can be minutes apart or two or three can follow in quick succession. When they come I can’t walk, I can’t talk and they literally take my breath away. To start with I thought it was pain from the endometriosis with them being like the worst period pains in the world but as the days went on the pain migrated from being across the whole of my lower abdomen to just my left side. This is the place I always get pain when I have a bowel obstruction. 

But I didn’t think I had a bowel obstruction as usually the obstructive episodes follow a set pattern. Normally I would have bad pain, I would vomit and have awful diahorrea and then everything stops. And that all usually happens in a couple of hours. So the fact that this pain built up from Friday made me think it was something else. But then on Monday night I had severe nausea and was sick and I must have spent at least an hour on the toilet, unable to get off as diahorrea was just pouring out. I remember wondering where it was all coming from! 

It had crossed my mind to go into hospital over the weekend but like I said I thought I might just be able to get through it and as ridiculous as it sounds I wanted us to watch the Queen’s funeral together as a family. It felt like such a monumental, historic moment and when the kids look back on it in years to come I wanted to be part of that memory. But on Tuesday morning after 4 nights of barely any sleep and being in agony despite doubling my dose of morphine tablets I asked Hubby if he would take me into hospital. I rang the ward to tell them I wasn’t well but they didn’t have a bed meaning I would have to go in through A&E. I was dreading spending hours and hours in A&E but knew that was the only way to get up to F22 and start getting the treatment I needed.

Luckily A&E wasn’t too busy and I was triaged within an hour and then 30 minutes later I was seen by an ACP (Advanced Clinical Practitioner). An ACP is a nurse that has undergone training to a Masters degree level which allows them to take on a similar role to a middle grade junior doctor. The one I saw in A&E was amazing. The fact that she had blue and purple hair suggested to me that she was going to be a decent person or as the Americans would say ‘good people’. And she was. She listened to me, realised that I was the expert in my illness and my body and did everything she could to get me seen quickly and to make me comfortable. Because she suspected a bowel obstruction she wanted to move me round majors but there was no bed so I ended up going to resus! I felt really guilty taking up a bed there when they’re usually reserved for life and fealty situations. But I was only there an hour before being moved to ‘bed waiting’. Because F22 knew I was coming in they were able to get in touch with the bed manager, move someone off the ward and then move some patients about to create a bed for me. So by 6pm I was up on the ward being looked after the amazing nurses there. 

I had a CT scan yesterday which showed that I don’t have a bowel obstruction but instead I have a lot of inflammation in my bowel. So it would seem I’m having a Crohn’s flare up. To try and get this under control they’ve got me on huge whacking doses of IV steroids 4 times a day and they’re going to start the adalimumab injections in the next few days. 

I’m still in a lot of pain so a nurse from the pain team came to see me today and they’ve changed my pain meds. They’ve got me on liquid ketamine as well as morphine injections which I’m hoping will get me through the next few days until the steroids kick in. 

But as usual this couldn’t have come at a worse time. One of my closest friends, Kitty, is getting married on Saturday so I’m going to miss out on her special day. I’m absolutely gutted but the wedding is in the New Forest so it’s simply too far for me to travel. Big Girl also has some netball trials in Leeds and Loughborough and my parents are holiday so Dad’s taxi isn’t available! I had also been trying to take Big Girl out in her car every day to practice her driving in between her lessons and I had really been enjoying watch her learn this new skill and see her grow in confidence every time she got behind the wheel. Plus Big Fella has a school trip so Hubby is going to have to make sure he has everything he needs for that. Luckily I bought him the wellies he needs for river wading a few weeks ago so Hubby won’t have to trawl the shops looking for a pair. And I had tickets for the theatre on Tuesday for a play I had been looking forward to seeing but obviously had to miss that. 

I feel like I was just starting to get to a point where I was able to do things with Hubby and the kids and play a more active role at home and then this hits me. It has obviously been building up for a while as over the last couple of weeks I’ve been feeling worse and worse and having more and more bad days to the point where last Friday I took to my bed and then couldn’t get up again. I’m really hoping though that the steroids and adalimumab kick in soon so I won’t have to spend too long in hospital this time. I’m not sure my mental health could take a lengthy admission again but we’ll just have to see what my body has in store for me this time. 

And following on from my last post about my PIP review, somehow I managed to complete all the questions and print it out over the weekend. I was on mega doses of morphine so I had to get Hubby to check that everything made sense and that it wasn’t just the ramblings of a crazy woman! And we stopped at the Post Office on the way to A&E to post it special delivery, signed for so they can’t say they didn’t receive it. That alone cost nearly £8 but it’s better than it getting lost in the post and having my PIP payments stopped. Let’s see how long it takes to process it though. I e had messages from people that have been waiting for over 10 months which is just not acceptable. Although if my points go up and my payments get increased that would mean a nice little lump sum if they back date it. We’ll just have to wait and see.