More than just a bag lady

And they're normal.  Wow.  There's a first time for everything. I have no ulcers and no crohns, my pouch looks good and the doctors are happy.  The pain and spasms I've been experiencing are being attributed to a naughty belly and bowel. Not surprising really after all they've been through in the last 6 years. They're protesting loudly and making it known that they're not happy.  My Grandma, who despite having dementia can be as sharp as a knife, hit the nail on the head today. She told my Mum that the doctors have created new insides for me and that I have to be weaned, like a baby. She's right and that's probably why I can cope with sloppy food like mash and gravy, custard and soup but things like pizza and falafel (evil, evil stomach blocking things!) upset it and cause me a great deal of pain.  I also have a suspicion that I may have a problem with wheat. I had some tests done at a health food shop a few years ago when I was desperate to find a way t...

I was talking to the pouch nurse today about how to know whether my pouch had emptied completely.  I told her that sometimes it feels like there's more in there but I don't know if there is or how to get it out.  She suggested standing and then sitting down again and leaning back while on the loo as position can affect how well the pouch empties.  She said if after a few weeks it still felt like it wasn't totally emptying then you can have a 'defacating pouchagram'. The puzzled look on my face meant that I needed this explaining to me although I immediately wished she hadn't.  In a normal pouchagram they put a catheter into your pouch (via your bum), insert a liquid and then take X-rays. The liquid shows up on the X-ray and can highlight any leaks in the pouch etc.  A defacating pouchagram is where they insert a paste instead of a liquid then ask you to go behind a screen and take X-rays while you do a poo!! The idea is to see how much comes out and how much sta...

Yesterday I was lucky enough to have not one, but two cameras poked and pushed into various bodily orifices. I thought I would explain a little bit more about the tests and procedures so you know what I had done and incase you ever have the pleasure of having these done yourself. The doctors had ordered two tests to be done- a gastroscopy and a flexible sigmoidoscopy. These should hopefully identify a cause of the pain I've been getting in my stomach and rectum and allows the doctors to check that everything is healing ok internally.  In order to have these tests I wasn't allowed to eat from midnight and was completely nil by mouth (so no drinks) from 7am yesterday. I knew I was going to be on the afternoon list and had hoped I would go down early. No such luck. In fact I was the last patient of the day at 5pm.  I was taken down from the ward on my bed wearing one of the super sexy NHS gowns but luckily no stockings. Some patients require an enema prior to the tail...

I had a surprise today. Just before lunchtime I looked up to see my Mum and Dad walk onto the ward. I was so pleased to see them and it was lovely that they would spend their day off from work travelling up and down the A1 to visit me. It really cheered me up, especially as Dr 7 had some bad news for me on his ward round this morning. You know the bleed that I had from my Hickman line on Sunday? Well it turns out that as well as the blood pouring out, some bad bacteria has gotten in and infected my line. Another bloody line infection.  I don't know why I was surprised when he told me. If anything is going to go wrong, it will happen to me. Nothing ever seems to be straightforward. I am now on IV antibiotics for seven days meaning that I will be stuck in hospital for at least another week! Aaaaarrrrggggghhhhhh!!!!!!!!!!!!!!!!!!!!!!!!!! I  have spent most of the day hooked up to a drip as I'm not doing very well with my eating and drinking at the moment. It loo...

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...

Hospitals really do see the full life cycle. Most people are born in a hospital and quite a few people die here too. Having been in and out of hospitals I have seen many occasion the curtains being drawn only for the porters from the mortuary to come up with the coffin trolley.  Today on the ward one of the patients got married. He's only 33 and had bowel cancer and has weeks to live.  The wedding had been planned for April but it was his one wish to get married before he died. He was so ill he couldn't even make it down to the chapel in the hospital and instead had it in the meeting room just outside the ward.  There were 8 bridesmaids all wearing a gorgeous coral coloured dress and the bride looked gorgeous as she walked down the aisle of the ward.  It really makes you think about how short and fragile life is. And how lucky we are...there is always, always someone worse off than you.  I thought my wedding vows were emotional given that they were taken just we...

On Thursday some of the mums from school came up to visit me. Knowing that I had wanted to sneak out on Tuesday but hasn't been up to it, they asked if I wanted to go out somewhere. Now while most women would covet an hour in a shoe shop or clothes shopping, that's not really me. My idea of heaven is an hour spent wandering round... ...Hobbycraft.  Yes- that's right. I love, love, love hobbycraft and can spend ages in there looking at the paper, paint, cross stitching, threads and anything glittery. It's my idea of heaven.  A couple of the mums had never set foot inside a hobbycraft before which I found quite shocking. (In the same way that I find it shocking when people tell me they've never had a subway before) What kind of life are these people living??!! So they pulled up outside the hospital and I levered myself into the front seat. Luckily I still had my clothes from the day I was admitted otherwise I would have been going out in my fleecy ...