Still in hospital

I've been a little bit quiet for a few days as I've not been feeling too good. I've spent the last few days in a morphine fog but here's what's been going off.

On Saturday my sister and her hubby drove down from Derbyshire to visit me.  She brought with her tiger bread and a craft magazine- the perfect gifts for me right now. It was nice to sit and chat with them both although I wasn't feeling 100%. At the time I thought I was still worn out from all my visitors on Thursday but looking back it was the start of me feeling unwell.

After they left I had a sleep for a few hours. I've not been napping during the day because if I do I find that I don't sleep at night but I must have been washed out. When I woke up my pouch seemed to go crazy and I was on the toilet every 15 minutes. This lasted a few hours and by the end of it I was worn out and had a very sore bottom! I didn't sleep very well, partly due to having had the nap but also due to being up and down to the loo all the time. I think it was about 4am before my tummy felt settled.

On Sunday my bestie came to visit me with her hubby and 2 kids. We went down to the day room so that the kids could watch tv while we chatted. Her boy loves making himself a cup of tea in the day room and they both raided the crisps and cakes that I had collected during the week from my uneaten lunches.

Hubby and my kids were coming about 1pm so all 8 of us had lunch together in the hospital restaurant- toasties and chips all round. They wanted to charge us 16p per sachet of ketchup (and itwasn't  even Heinz!) and with 4 kids eating chips we would have needed a fair few sachets so I popped next door into WH Smiths and bought a bottle instead. That was £2.49 which is still a rip off but I told hubby he can bring it with him when he comes again! It does annoy me that the shops in the hospital charge so much for things. When you're a patient you can't go out so have no choice but to pay the prices but if you're in for a while it can really add up. 

After lunch I was feeling pretty drained so came back up to bed and curled up to listen to Big Girl read me some of her book, 'Diary of a Wimpy Kid'. Big Fella also read me some of his reading book from school which was a story about castles and knights. It's being able to do simple things like listen to them read and write in their reading records that I really miss. The time with them seemed to pass so quickly. It hardly seemed like 5 minutes from them running up and hugging me outside the restaurant to it being time to say goodbye. This is the real downside to being in a hospital that's so far from home. When I've been in a local hospital they have been able to come and visit after school but it would be a 2 to 3 hour round journey to St Marks depending on the traffic on a weekday evening and by the time they've done their homework and had some dinner there's no time for visiting before bedtime so I only get to see them at weekends.

I like to go to Mass on Sunday afternoons when I'm in hospital. The chapel is lovely and peaceful and the priest, Father Augustine, is a really lovely, smiley Phillipino who makes you feel very welcome. He knows my name- I'm not sure the same could be said for my own parish priest! 

The lady opposite me in the bay on IFU is an old Irish Catholic lady. Her family are lovely and came to go to mass with her and so I sat with them. I didn't feel well during the mass so stayed sitting for most of it; hunched over my hot water bottle that had been permanently glued to my stomach for most of the day. When mass was finished I felt very ill and was in huge amount of pain and had to lean on the lady's husband and son in law to make it back up to the ward.

I got straight into bed and asked for some pain relief. My pouch was still playing up a little and sensing the need to go I dashed to the loo. As I took my dressing gown off I noticed that my pyjama top was all wet. Cursing the hot water bottle for leaking I went to take it off when I realised it was blood. A lot of blood. There was a scream and I realised it was me shouting for a nurse.

The nurses came running and put me to bed. The blood was pouring out of my Hickman line as the clamp was undone. They stripped me off and checked my line to make sure there was no damage before they clamped it shut. This stopped the bleeding but I had lost quite a bit of blood and they were concerned that air may have gotten into my line which is bad, bad news. The on call doctor came up and listened to my breathing, happy that it all sounded ok. They ran an ECG test as they needed to make sure that my heart was ok before giving me more medication. All of this was done with my boobs bared for all to see but I guess the nurses and doctors have seen it all before.

My little Irish friend had whipped away my bloody clothes and unbeknown to me had already set about soaking them in cold water and salt so that the stain didn't set. She then washed and dried them all for me. These small acts of kindness mean so much when you're feeling poorly. 

The pain in my stomach was very bad by this point so the doctor gave me some more morphine and another painkiller injection and once I was fully dosed up I managed to get some sleep. I woke in the middle of the night apparently shouting out in pain and the nurses had to give me some more painkillers but I don't remember that- they told me about that on Monday morning. 

On Monday mornings it's the full, formal ward round. Crowded around my bed, inside the 'soundproof curtains' were:

the consultant

2 other doctors

the ward sister

the nurse in charge of the bay

2 dieticians

the specialist nutrition nurse. 

Dr 7 asked me to tell him about the pain and as I described it he said that he wasn't happy that I was in this much pain when the operation was two and a half weeks ago. He wanted to run some tests- a CT scan to see if there was evidence of a leak or a collection, an endoscopy to see if there's a reason my tummy hurts whenever I eat and maybe a pouchagram to make sure the pouch is functioning properly.

Although I was pleased that they were going to look into why I was in pain, it also concerns me that they are concerned. These tests must cost a lot of money to do, so they're not going to do them unless they need to. And they obviously think they might see something which is why they've ordered for them to be carried out. 

I spent most of yesterday in a lot of pain and Dr 7 had told me not to eat if I didnt want to as its obviously aggregating things. This relieved me as I was forcing myself to eat to try and get well enough to go home only to end up with pains after I had eaten. Yesterday I had a cup-a-soup and a bit of bread and that was all. They started me on two new painkillers,  Oxy- something-or-other ( I forget the names of them!) One is a 12 hour, long lasting painkiller and the other is for break-through pain, ie when the pain gets too bad and I need something to top me up. These did help but knocked me out a little bit so I spent most of my day yesterday lying in bed watching DVDs. 

Today the doctor decided to increase the amount of background pain relief so I've had a much better day. The pain has been better controlled and my pouch has slowed down now that I'm not really eating much. I've gone back to mash and gravy as I know that's safe and my tummy tolerates it quite well. 

I had the CT scan today to see if there are any leaks or perforations in the bowel. I had to drink 2 litres of disgusting contrast liquid before the scan. At one point I thought I was going to throw it all up. 

I was also given IV contrast which as it goes into your system gives you the strangest sensation. You feel like you've wet yourself and it goes all warm like you have, but you haven't. Honest. 

Then you lie on a table and pass through a scanner (which looks like a giant ring donut) having to hold your breath at certain points. The whole process only takes 5-10 minutes and is completely painless. And it's not noisy like an MRI scanner either. 

The results came back pretty quickly and Dr 18 came to talk to me. "Do you want the good news or the bad news"? He asked. The good news was that there are no leaks, tears or perforations in my bowel. Brilliant. The bad news? They still don't know what's causing the pain so I will need a 'top and tail' endoscopy. Oh goody. I can hardly wait for that! 

So that's what I have to look forward to over the next day or two. Someone shoving a camera down my throat and up my arse. Preferably not at the same time. 

NB x