More than just a bag lady

It's New Years Eve and finally time to say...  This year has quite possibly been the hardest year of my whole entire life.  I have spent in total over 20 weeks in hospital away from loved ones but especially my kids.  I have been dreadfully poorly, collapsed at work, been blue lighted to hospital, had surgery, infections, a million blood tests and cannulations, ended up with needing to be hydrated each night through TPN and had multiple lines put in to do this. I've had a new stoma that goes crazy bonkers most of the time, had leaks, been reduced to wearing Tena pads but you know what? I'm still here.  And unlike other years when I've been ill, I'm smiling.  I'm not bitter, thinking "why me?" because actually, "why not me?". I'm not allowing the past to have a hold over me anymore. I will take control and deal with everything and anything life throws at me. It may knock me down, but it will only be temporarily and I will get up fighting. ...

Last year I spent my birthday, Big Girl's birthday, Big Fella's birthday and my Hubby's birthday in hospital.  While going through my photos I came across some pictures that we took to mark the events and thought I would share them with you.   I decorated the bed for visiting time on Big girls birthday. Giving out the presents. I got a friend who was visiting the day before bring some bits so that I could have something to give her.  Hubby wearing the favourite present- a 99p pair of novelty glasses. In the background is my laundry drying on the curtain rail. There was a washing machine and tumble drier on the ward but some of my stuff couldn't be tumble dried. This was my solution. One day my consultant came and had to push past it all to see me. She laughed so much and said she had never seen a patient do it before.  We had a birthday picnic in the day room. This was Big girls picnic face.  Me and hubby on my birthday. The ward at Princess Alexandra was very ...

You've probably seen this photo on Facebook where the reality of sleeping with a baby is shown against the perception of how lovely it would be.  That's a bit like my day today. In my head I planned a morning at Ikea where me, hubby and the kids would go and have a nice family breakfast, followed by a leisurely walk around.  What actually happened was that we stepped into hell on earth.  It started out with me waking up at 8am and deciding to do the ironing. Why? I have no idea. I hate ironing. The kids woke up at 8.30 and at 9am I asked hubby to get himself and the kids ready so we could leave by 9.30.  As is typical of this family, by 9.30 nobody was dressed other than me which resulted in 20 mins of me cajoling, nagging and shouting for them to crack on so that we could go.  When we got to Ikea the queue for breakfast was massive. In the queue I asked the kids what they wanted. Bearing in mind they only had to choose 3 items it shouldn't have been hard but ap...

I've spent the last 2 evenings on the laptop looking at places that we could take a family holiday next summer.  Since I've been ill we have had some long weekends away but all of them in this country and have not had a weeks holiday for years.  I've never felt confident enough to go abroad for a week given the unpredictability of my illness, the amount of medical and stoma supplies I would need to take and the thought of going somewhere where they don't speak English. Sometimes explaining my medical history to doctors and nurses in this country can be a challenge- I can't imagine what it would be like with a language barrier too! I still don't think I'm ready to take on a week abroad given that I don't yet know how well I'm going to be after the op and how long it will take me to fully regain bowel continence.  Last thing I want is to be shitting myself on a Spanish beach or trying to get medication from a pharmacy in Ibiza.  So I'm looking at C...

It's been a long night.  My bag has leaked 3 times meaning numerous changes of pjs, Glastonbury showers (see my leaking bag and shower rant post for a full explanation) and a general lack of sleep. With all the extra laundry I have to do I should get my washing powder on prescription! Where the output/poo gets onto your skin it makes it sore. This is because it's very acidic and actually causes it to burn. So all around my stoma is now red raw, inflamed and I'm in agony. Time to fish out the liquid morphine me thinks.  Not sure why the bags are leaking so much. I haven't really over-indulged the last few days or eaten anything that I shouldn't have...apart from a few quality street and celebrations.  Chocolate is not allowed on a low residue diet. Not sure why, I think it has something to do with bowel motility (how fast/slow things pass through the bowel). So whether those few chocolates have caused this (and I do mean a few, like 6 or 7, not what some of my friend...

Before I went into St Marks in July I had been on massive doses of steroids for months on end. Surgeon A had asked me to lose weight for the operation to reduce risks when I met with him in January 2013 but the steroids made it an impossible task and as  a result I had ballooned in weight and was nearly 5 stone over my ideal weight.   One of the things I remember about coming round from my j-pouch formation operation in July was Surgeon A telling me that there had been complications with the operation (the bowel/vagina sewing together thing) and that it hasn't been an easy operation 'because of my size'.  Apparently I gave a rather rude reply about being on steroids and not being very well which contained a few expletives before going back into a morphine/anaesthetic induced sleep.  Since that operation I have gone on to lose weight, partly from being so poorly that to start with I hardly ate for weeks and partly from the fact that what...

It's 5.30am and I'm wide awake but exhausted.  I've just got back into bed after having to sort out a bag leak. I must have been in a deep sleep cause usually if I get a leak I will wake up before it gets too bad but this one had lifted the base plate of the stoma bag, covered my knickers and pad and soaked right through my pj bottoms. The only good thing is that it didn't go on the bedding otherwise I would be changing all that too.  One of the large bowels job is to absorb water from stool. Not having one means that my output (another word for poo) is much more liquidy as a result.  So when your bag leaks it means that you can end up covered, and I mean COVERED, in shit.  The other problem is that being hooked up to my TPN with its pump and rucksack I can't have a shower to get clean so I had to have a Glastonbury shower instead... a good strip wash using a packet of baby wipes! Times like this do really piss me off. The simple act that most people take for grante...

The Daily Mirror has been forced to apologise after it's football Twitter feed mocked a 3 year old boy for wearing his TPN backpack when he was a mascot for a football game.  The little boy is seriously ill and unable to eat or drink and has a central line to give him TPN feed.  Seemingly unaware of his condition, @MirrorFootball, which has almost 270,000 followers first tweeted during Match of the Day on Thursday evening: "A mascot with a backpack on. What is happening to the game we love?" The next message posted by the feed read: "#againstmodernmascots #againstmodernbackpacks #MOTD" The newspaper should be ashamed of itself. If they mocked a cancer sufferer in this way the whole nation would be in uproar but TPN feeding is limited to such a small community of people it is still not widely understood or accepted.  To read the full details click on the link: http://www.givemesport.com/413891-daily-mirror-apologises-after-tweets-about-sick-3yearold-masco

Today I have had a lot of stool passing out my back passage. Because it's passing through my pouch it gives me terrible tummy ache.  Now before you wonder whether a miracle has occurred overnight I need to explain how this happens.  I generally tell people that in my next operation I will 'get joined back up' but in actual fact I am joined up right now.  The picture shows the 2 different types of ileostomy or stoma that I have had (sorry about the picture, nicked it from a google search! It must be of a man cause there's a lot of hair shown there!!) The end ileostomy was what I had for 4 years after my large bowel was removed. Everything that goes in your mouth passes out the end of the stoma.  In a loop ileostomy (which is what I have at the moment) a piece of small bowel is pulled through the abdominal wall and it has 2 openings (imagine splitting a hose pipe open) The majority of stool passes through one opening and goes into the stoma bag. Some stool can pass thr...

I've had a lovely Christmas. It's been a little bit different to normal but then again, so has everything this year! Me and hubby are both from Nottingham so we would normally go 'up North' at some point over Christmas if we aren't there for Christmas Day itself.  A few weeks ago hubby announced that he didn't want us to go as he wanted us to have some quality time at home, as a little family unit.  When he made this announcement I nearly fell out of bed as he is so big on family that he would usually insist that we went up to see everyone.  I think part of the reason is that he wanted to keep me within a 30 mile radius of St Marks incase I was poorly and also the fact that we are both dog tired and didn't fancy going from house to house to house visiting all the relatives.  So Christmas Day was spent at home, just the 4 of us, having a lovely, relaxing time.  I went to Midnight Mass with a friend and her sister. Now I'm a ca...

This should be my last Christmas with my Stoma bag if the operation in the new year goes to plan.  So on that happy note this bag lady would like to wish you all a very Merry Christmas. 

Today has been great. I honestly didn't think I would be at home this Christmas so I'm feeling extra specially blessed and happy that I am.  Every year we go bowling with some close friends and their children and this year 2 of the kids beat 2 of the adults- think the bumpers might need to come off next year to make it a fair game! Every year we take a picture of their feet in the bowling shoes... Here's the offering for 2013: Because of my infected Hickman line I had to bowl using my left hand and to be honest I was no better- or worse- than I am normally.  Despite being unable to enjoy a tipple this year I thought I would get into the Christmas spirit and wore my Santa leggings.  After that we went to Mass at the children's school where big girl played Mary in the nativity and big fella was King 1.  We came home to get our pjs on and put out our tray of offerings for Father Christmas before snuggling down to watch The Snowman and The Snowman & the Snowdog....

I have a blocked up nose.  I have a sore throat.  I have a banging headache.  I have a body that hurts. All over.  I have a cold.  This came on today and now seems to have taken over with a vengeance.  I've made myself a Lemsip (remembering to omit paracetamol from my evening meds) in the hope that it might help me to feel better and get some sleep. I'm not sure how much will get absorbed as it flies through my bowel faster than Rudolph but I figure its worth a try.  NB x

Tonight we went with another family to a local church for a Christmas Carol service.  At it started at 6.30pm so I decided to do an early dinner of pasta bake and garlic bread. When we arrived to pick our friends up at 6.00 I used the loo and emptied my bag.  Half way through the service I looked down and saw that my bag had filled right up and was almost at bursting point. Knowing there was still at least another 30 minutes to go I started to panic, wondering whether it would last or if it would leak and start trickling down my leg.  I was desperately wondering whether I would be able to go outside and discreetly empty it into a drain or something when I saw a mum take her child through a door and moments later I heard the flushing of a chain. Hallelujah! Not wanting to draw attention to myself I asked big fella if he needed a wee so that it would look like I was taking a child to the loo and not that I as a grown adult couldn't 'hold it' during the service.  What I...

Today has been a good day.  I went to St Marks this morning to have the second dose of IV antibiotics. This time I did it myself with the nurse watching to check that I could do it ok.  I came home with a bag of antibiotics, needles and syringes. Crikey, I sound like a junkie!! After that I went to pick up the kids from school- their last day before Christmas. Here is the lovely Christmas card that big girl had made for me.  One of the mums said that she thought I had been looking really well lately. She said it was probably because I'm always smiling- something that I realised I hadn't done much of the last few months or years.  The kids had some friends round to play and it was a good chance for me to have a good catch up with friends that I haven't spent much time with over the last few months.  It's so nice to be able to do normal stuff like this and I feel like I'm rediscovering the old me.  I hadn't had any TPN fluids the last 2 nights because of the ...

I was chatting with some friends the other day when they asked what my stoma bag looked like.  I had no problem in showing them and explaining it but it made me realise that so many people may have never actually seen one.  I'm going to post some pictures of my stoma bag and of my stoma. If you're a bit sqeemish you may want to look away now! The bag attaches to the body by a sticky base plate.  The size of the hole is cut to the size of your stoma- everyone had a different size. Baby ones can be as small as 10mm and they can go right up to 60mm. Mine is a rather average 30mm. They're not always an exact circle either. Some can be an oval shape and they can change size depending on whether you put weight on (or lose it), if it swells up due to illness or blockage or surgery.  I also use elastic tape to give some extra security to the base plate and help to prevent leakages.  I wear a belt too which clips onto the stoma bag and helps to pull the bag tighter onto ...

Another line infection! Another bloody infection! I can't believe it.  Just seen Dr 7 in his clinic and he thinks it's almost certain that I have a tunnel infection. Most people get infections at the exit site (the bit where the line comes out of the skin) but he said the symptoms I'm describing sound like the infection is deeper and in the tunnel part (where the line is tunnelled under the chest from the neck).  This is a lot rarer than an exit site infection- bloody typical that I get it then! It could be due to the fact that I had a lot if scar tissue and it needed to be pushed in more or it could just be one of those things.  As he put it "there are four options.  1. Do nothing. Go home to bed and pull the duvet over your head and cry.  2. Have oral antibiotics.  3. Have IV antibiotics.  4. Take the line out and put another in." We dismissed 1 and 4 as being over dramatic and discussed the merits of 2 and 3. Ora...

I'm currently sitting in the day room of the Intestinal Failure unit at St Marks.  My new Hickman line is hurting so badly I can hardly move my right arm and I wanted to get it checked out to make sure it's nothing serious.  The nutrition nurse has just taken some swabs to see if there's an infection as I noticed earlier today a lot of blood and green gunky stuff when I changed the dressing.  So far I don't have a temperature but I didn't infuse last night as I was so tired and in so much pain I just couldn't face it. I just climbed into bed with a hot water bottle on my chest, heat pad on my back and dosed up on painkillers.  She's said it could be nothing and could just be sore as they had to push the line in as I have a lot of scar tissue in my chest due to having had previous lines. But it could be something so she's asked the consultant to see me in his clinic this afternoon.  Why does nothing ever seem to be easy and straightforward?  NB x

This journey began nearly 7 years ago when big girl was just a baby and big fella was the size of a peanut.  I was a few weeks pregnant and had noticed some bleeding when going to the toilet. One day I went and there was so much blood that I thought I must be having a miscarriage- but soon realised it was coming from the wrong hole.  At just 24 I didn't really fancy going to the Doctors and having them poke around down there (lets face it, we all get embarrassed about down below stuff) but I was worried that I was soon going to have 2 babies that would be needing me and that I couldn't put it off incase it was something serious.  The GP referred me to a gastroenterologist at Chase Farm Hospital in Enfield where I got an appointment pretty quickly.  I remember going and the consultant, Dr 22, saying that he wasn't sure what it was but being pregnant he couldn't do all the tests so I would have to go back again once the baby had been born.  No...

After agonising over whether to go in for the 'Fanny Assessment' on Thursday I called St Marks yesterday and left a message saying that I would go ahead with it. It hasn't been an easy decision to make and I sought advice from friends and family where opinions were split 50/50.  In the end I decided to go ahead with it as I thought it was a relatively straightforward procedure and would require an overnight stay at the most. Chances that anything would go wrong were slim and it might just speed things up in terms of the next operation in 2014.  I hadn't heard anything yesterday so decided to give them a call so I could get some more details and prepare myself to go back in.  However when the admissions clerk answered she said she was going to call me to tell me that it wouldn't be going ahead on Thursday after all as Surgeon A wanted to do the reversal at the same time (as long as everything looks ok down there) and they didn't have a big enough ...

After the weekends excitement I am shattered. Not just worn out but bone achingly exhausted.  Today was therefore officially a duvet day. I had to wait in for my TPN delivery so couldn't go out anyway so used it as an excuse to lay on the sofa catching up with all the stuff I had on Sky + but not watched from being in hospital.  So while the kids were at school I watched 4 weddings, Come dine with me, 16 and pregnant and 60 minute makeover. All total trash but the kind of tv that requires no thinking or real concentration.   I think this is a reminder they although I am starting to feel better my body is still recovering and I need to make sure I rest to keep myself well and out of hospital. Last thing I want is to overdo it and get another infection/bug/virus and be in for Christmas.  It's now 7pm and I've been in my pjs for an hour waiting for the kids to go to bed so that I can go too!  Hopefully after a decent nights sleep I will feel better.  NB x

One thing I don't miss when I'm in hospital is my husband snoring.  If I 'accidentally' held a pillow over his head could I blame it on the medication??

I thought I would show you what it takes to keep this body of mine ticking over.  That is a days worth of medication for me at the moment, and that's good. Earlier on in the year I was on a lot more! I also occasionally like to have a little swig of this- Chardonnay for the sick! A friend sent me a birthday card one year that I absolutely loved... I can't imagine what it might be like to be medication free. At the moment it still seems like a distant dream. This has all become such a normal part of my life that in some ways it will be a bit strange when its all gone.  But for now I will keep taking my tablets...otherwise I might go mad! NB x

My coffee group was formed 8 and a half years ago when big girl was just my baby girl. I had gone to an NCT coffee morning as a bump and been put in touch with some other local new mums.  Never in my wildest dreams did I imagine how the friendship would develop or how that group might change my life.  My coffee group has, and continues to be my lifeline. Seven ladies with whom I have shared life's ups and downs. Over the last 8 years there have been more babies, weddings, christenings, miscarriages, relationship breakups (and make ups), new homes, illness and bereavements but through it all we've had each other.  As the kids have got older and gone to school we have had less time to meet up and that pesky thing called work often gets in the way too but we always make sure that every few months at least we get together for dinner or a takeaway.  Some of us see each other more often as our kids might do a club together or we may live close to each other but we know tha...

This weekend has been all about quality family time. The kids had an inset day at school on Friday so after a late breakfast we got the train into London, destination Winter Wonderland. The kids enjoy going on the train and the tube and this time were able to look at the tube map and work out where we were going, what line we needed etc.  We got off the central line at Marble Arch and went to Prezzo for lunch. It's somewhere that every member of our fussy family is catered for. The kids love the garlic bread and last time we went the boy tried the meatballs and liked them so we were onto a winner (in pizza express the only thing he will eat is dough balls, 3 portions!!) Being on a low residue diet can make eating out quite tricky but I had a goats cheese risotto with garlic bread...nice and white, which is my general rule of thumb for low residue- if it's white, it's all right!! For those of you unfamiliar with a low residue diet it is basically a diet t...