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 ...

The plan is that there is no plan.  I've been told by the doctors that I can't go home until I can eat and drink more without either throwing it back up or it blocking the new pipe work.  I'm back on the mash potato and gravy diet after the recent blockage and having ensure supplement drinks to make sure I'm getting all my vitamin, minerals and calories. They're even giving me these medicine shots that have a super high calorie content in them. Gone are the days of my shot glasses having vodka in them! After 6 months of not being allowed to drink I have had to set alarms on my phone reminding me to drink so that I don't get dehydrated now they have taken the feeds and iv fluids down.  The doctors don't seem overly worried though so neither am I. At the moment it's just a case of waiting for everything to settle down and hoping for the best.  I think the real test will be when I try eating something different (not falafel this time!) and I'm glad this...

The Intestinal Failure Unit (IFU) is a funny old place. It's a ward for patients who as the name suggests, have been diagnosed with intestinal failure of some sort.  According to St Marks website  http://www.stmarkshospital.org.uk/intestinal-failure-unit "Intestinal Failure is a rare condition in which The small intestine is unable to digest and/or absorb the correct amount of nutrients. The body is not able to reabsorb fluids produced by the intestine. These factors can therefore contribute to malnutrition and dehydration." This isn't my first stay on IFU. When I was told I was coming up here last year after my pouch formation operation I sobbed and sobbed. For literally 6 hours.  I had heard stories from other patients that once they got their claws into you up there you never got out for months on end and whilst it's true, there are indeed some long stay patients, trust me they want the beds so if you are well enough to go home they don't keep you in for th...

After my diet of mash and gravy I thought last night I would branch out and have something a little bit different.  I fancied rice so ordered plain white rice with falafel. When it arrived the falafel wasn't the usual little balls but a big rectangle instead. Knowing that I should only eat a little bit I took most of it off my plate, mashed the rest up with the rice and mixed it with plenty of ketchup so that it wasn't too dry.  It may look like a dogs dinner but was actually quite nice. Except my bowels disagreed.  It has totally blocked me up and nothing has come out of me since eating it. Except when I've been sick that is.  The doctors have said they think my bowel is blocked at the point where my Stoma used to be. It may be narrow or inflamed from surgery which makes it harder for things to pass through.  As you know I didn't sleep a wink last night and have spent most of today in a lot of pain with a swollen, distended tummy. I'm back on oramorph (liquid m...

I'm lying here at 5.30am unable to sleep. I have been awake all night. All  bloody night. The irony is that the bay is near silent tonight. No snorers, no machines beeping, no nurses disturbing me at 2am to do a blood test so I really have no idea why I'm wide awake.  It seems as good an opportunity to continue my rant from one of my last posts because yesterday it got even worse.  Bearing in mind that the last visitor of the old lady in the bed next to me left about 11pm on Sunday night I was astonished to see them all descend again yesterday morning at 8.45am. Not one. Not two. But four. Four visitors coming in over 2 hours before visiting was due to start.  I had totally had enough by this point so in the absence of the ward sisters I took myself off to see Matron. Matron Ummi is a middle aged Asian lady whose waist is so tiny I could probably get my hands around it. But her eyes and tone show that she's formidable and she runs the St Marks wards with a mixture of...

I used to shower once or twice a week (or after a leak) because of the faff. Dont worry I would have lots of washes and Glastonbury showers (see previous post) in between.  With a Stoma bag I found that there was no jumping in and out of the shower and no such thing as a quick rinse! Showering with my old Stoma could be a bit like showering with a bomb. You never know when it was going to leak and explode everywhere. Or that's certainly my experiences. I have met people with lovely quiet, well behaved stomas that never leaked but I wasn't blessed with one of those! I could never just get out of the shower and have a quick dry and go, or equally loll around in my dressing gown getting dressed at my leisure. I would have to get down to the business of changing the soaking wet bag of poo and putting a new bag on (which regular readers will know has proved to be a bit of a challenge for me in the past). A lady in hospital said she used to put a nappy bag over her Stoma bag secured ...

Yesterday my cannula was taken out. It was good that the nurse did that whilst the kids were visiting as I always tell them that if Mummy doesn't need medicine in her arm then she must be getting better.  I know that to some kids watching a needle being taken out of your Mums arm wouldn't be their idea of fun and might even cause them to throw up but to Big Girl and Big Fella this was brilliant because they know that it might not be too long before I get to go home.  After my 2 lovely sleepover buddies went home two old ladies were moved into the bay. The old lady opposite is a proper Londoner, as deaf as a post and shouted me over to help her with her new mobile phone. She thought it was broken but in fact it just needed switching on! In the bed next to me now is a very old Asian lady with a very  large family who are there all day. And night.  At one point I counted 15 around the bed before the Sister came in and kicked them out this afternoon.  I appreciate t...

You meet so many different people within the 4 bed bay of the hospital ward. Like real life you don't always like them all, and quite frankly some are horrid (or their family certainly is!) But you also meet some lovely ladies too.  Like the lady that was opposite a few days ago that knits dolls clothes (complete with leg warmers!) and gave me some for Big Girl.  The 2 other ladies in the bay at the moment are fab. Last night was such a fun night; it was like being on a girly sleepover, except we were all in hospital. We talked and talked and laughed until our wounds hurt. It's so nice to be able to chat with other people going through similar things and not having to explain yourself because they just get it .  Last night we covered topics ranging from stomas and poo (of course), babies, cats, crafts, work, the future, the past... All sorts really.  When we were talking about work we all said how we went into work when we were ill and probably shouldn't have. P...

Not having a Stoma anymore means that I have lots of medical products at home that I no longer require. (It still sounds very strange to be able to say that I don't have a Stoma- not sure how long it will take to get used to it!) I wasn't really sure what I was going to do with all but thought I would worry about that in the coming weeks.  Anyway, I was chatting to the lady in the bed next to me who was saying that her Stoma supply company didn't supply very good wipes (for cleaning the Stoma site when changing the bag). She liked the ones that I had so I told her I had a lot at home.  I said that I could get my parents to bring all my supplies in and she could rummage through the bag  And that's exactly what she did.  My parents thought it was hilarious how excited she got about a new product shed never used and how animatedly we talked about all the item. Mum said it was like a Stoma jumble sale! And the good news is that the Stoma nurse has taken the items she did...

After the complications at the start of the week you're probably wondering what has happened since? Well on the whole it's good news. The pain I was experiencing has greatly reduced and I'm off the PCA and just having oral morphine if required. The surgical doctors are happy there hasn't been a leak otherwise I would be very poorly by now and would have definitely required surgery.  I'm more mobile and getting about is less painful although I'm still shuffling about like an old lady. But more like an old lady on pension day, you know- has a slight skip to the shuffle.  I'm still not really able to eat or drink anything. I'm allowed but every time I do then I get terrible tummy pains. The Stoma nurse has said that this is quite normal but because I haven't had anything proper to eat in over a week the nutrition doctors had now put me on TPN (total parental nutrition).  Basically they are feeding me through my Hickman line 1400 calo...