More than just a bag lady

 Last night was pretty awful. Halfway through Britains Got Talent I had the urge to go and I had to run to the loo. And there I stayed. For over an hour.  The pain was terrible. I've been losing quite a lot of blood from the back passage again and having real urgency which Dr7 thought might indicate pouchitis when I went to see him a few weeks ago. (Pouchitis is basically an inflammation and infection of the pouch.) Dr7 ordered an urgent  endoscopy to have a look at the pouch. The appointment came through yesterday- it's on the 25th June. How is that urgent?  Because it's getting no better, infact it's getting worse, I decided to ring the pouch nurse at St Marks this morning. I described the symptoms and she said "ring your GP as soon as you put the phone down. You need antibiotics straight away". She started to tell me which antibiotic I needed to get the GP to prescribe. One problem- I'm allergic to it. Plan B then. A different antibiotic at a mega dose...

Did you know that I have a Facebook page?  https://m.facebook.com/morethanjustabaglady 'Like' me to get notifications of a new blog post. I promise not to fill your timeline full of spam- just the occasional picture that I find online that I think is funny or sums up my day.  I've got 207 likers as of today...let's see if we can get that to 300. NB x

I had my eyes tested today. I already wore glasses occasionally, mainly at work when I spend lots of time on the PC but I haven't been wearing them very much lately as I'm not at work.  I usually go to Tesco opticians but a friend recommended a proper  optician and Hubby took Big Girl there a few months ago and came back full of praise so I booked an appointment there. Being a new patient I had to go through my medical history. You can imagine how long that took! I also had to list all my medications and when I mentioned that I took Buscapan the optician said she imagined that my eyes would have gotten worse. I couldn't understand how she would know that before even looking at my eyes-so I asked her.  She told me that Buscapan is designed to relax the bowel muscles to relieve spasms. Apparently the muscles in the eye are almost identical to the bowel muscles so if they're being relaxed then it follows that my eye muscles are too. Therefore my eye sight would be worse. W...

Today we went to a summer sports festival at a local sports club. They have a car park but it was closed off and the alternative parking that was provided would have meant a long walk. Not feeling too great I thought I would ask if we could park in the club car park. The conversation with the woman 'guarding' the entrance went like this: Her: the car park is closed. You'll have to park elsewhere.  Me: what about for disabled? Her: and have you got a disabled badge? Me: yes. Do you want to see it? Her: That's ok. *looking into the car* I assume you've got the disabled person with you? Me: yes. That would be me.  Her: *looks me up and down, rolls her eyes and begrudgingly moves the cone* go on then Here is an example of how people judge others. No, I'm not in a wheelchair and I might look relatively normal but that doesn't mean I'm not disabled. I can't walk far, I tire easily and need to carry 'supplies' so I need to be able to get back to the...

My friend Kitty, who you will have read about in my blog, went into St Marks at the start of the week to have her Stoma removed.  We'd been texting leading up to this as this was the operation that I had in January and I was trying to reassure her that she would be ok and that she wouldn't end up like me- with a Hickman line, on TPN and in hospital for weeks on end! I went to visit her on Thursday and she looked fab. I'm pretty sure she didn't feel it as she was still in a lot of pain and very tired but she looked healthy and ready for the next part of her journey.  I took her in a present of Tena pads (I know, I know, the perfect gift!) and some cat patterned pj bottoms for her Kitty Parade. As you may have guessed, Kitty is ever so slightly obsessed with cats. Her cats, her mums cats, anything with a cat print. She has what has been affectionately nicknamed the Kitty parade which is her wearing various cat themed items of clothing, and when I saw the pj bottoms I knew...

As I'm planning to return to work I was asked to visit the Occuoational Health Doctor. Now this is a new experience for me as I'm usually the one making the referrals as part of my job.  It's strange how nervous you feel just before the appointment. It's like that feeling you get when you're going through customs at the airport- you know you don't have anything you shouldn't in your suitcase but your stomach still starts to churn and your heart starts to race incase they stop you. Well that's how I felt. I know I've been ill and I've never been anything but honest in all my communication with work but I sat feeling nervous about what the Doctor would say or do in the appointment.  I won't go into details but the outcome of the appointment was that the OH doctor felt that I wasn't fit to return to work just yet. I was a bit gutted as I had been gearing up to going back and saw this as the next step in getting 'back to normal'.  But...

This time last week Bestie was having contractions and getting ready to drop her kids off at my house and I was having problems with my Hickman line.  She had a beautiful baby boy and I had a 2 night stay at St Marks hospital. Life's just not fair! But there was a happy ending-I made it to the Isle of Wight on Saturday afternoon, so I only missed some of the holiday, not all of it.  In the early hours of last Thursday morning I went to Northwick Park hospital in an ambulance, blue lights flashing all the way. St Marks doesn't have an A&E department so I go in there and they transfer me over (the 2 hospitals share a building so it's very easy to do) Luckily the IFU ward found a bed for me and by 10am on Thursday morning I was up there enjoying views of Wembley stadium again. I knew some of the patients on the ward. Sadly some still hadn't left since my last stay and some others were 'frequent fliers' like myself who I had met previously.  Dr7 was in clinic al...

This is what my kids did today... ...they collected shells on the beach. I should have been there doing it too but instead I did this... ...organised the magazines in the day room because they were too untidy and I was bored.  I had the Line-o-gram this afternoon. They injected contrast down my Hickman line and took X-rays of it going in to see if there were any clots, blockages or leaks. There doesn't appear to be any which is good but means that the pains I had are unexplained.  Fingers crossed my fluids go in ok tonight and I get discharged in the morning. Then  it will be me paddling in the sea with the kids instead of my Dad.  NB x

I've had a shower this morning. I borrowed shampoo and shower gel and got given a toothbrush and toothpaste by the ward. Because I don't have any spare clothes or knickers or anything here I was going to wash them using the ward washing machine but it's not working. So I rinsed them through in the shower. Needing to put a hospital gown on I realised that my hairy legs would be on show so asked the nurse if they had a razor they could give me. They had the razors they give to the men and despite being ever so careful it ended up looking like a blood bath. This is what it's done to my leg... I might aswell have left them hairy! NB x

On Wednesday the kids had a funday after school. The PTA had organised bouncy castles, giant outdoor games like connect four, dominoes etc, a BBQ, ice creams, a tuck shop and pocket money stall.  In the morning I went to the shops to get the ice creams and ice lollies, plus donuts for the helpers! I took my bestie with me as she was 2 days past her due date and the midwife had told her to keep moving. Plus I was going on holiday on Thursday so wanted to spend some time with her before I went.  She had been having contractions on and off so I picked her kids up from their school and took them to the funday so she could rest. The 4 kids had a great time, playing football, frisbee, going on the inflatables, having a little picnic and while we were there I got a  text to say she'd had a 'show' and was boucing on her birthing ball trying to encourage things along.  When it got to bedtime her contractions hadn't got any more frequent so she told me to bring the kids home s...

Mushy peas are evil. I probably don't have to say much more to most of my Southern friends but if you're a good ol' northern gal like myself it's impossible to have chips without them.  And that's what landed me in a LOT of pain yesterday.  I had taken bestie to the midwife yesterday as it was her due date and the baby was showing no signs of coming out. The midwife said she should stay upright and walk so we went for a little potter round the shops.  As it was approaching lunchtime we decided to stop at the chip shop (and being posh we ate in). Chips and mushy peas go together like Thelma and Louise, bread and butter, old people and the smell of wee...you can't have one without  the other.  But I should have! At the time I was fine but about 5pm I started to get a few pains. About 6pm I ran to the loo- and stayed there for a considerable amount of time. The pain was overwhelming and I couldn't move. Big Girl had to ring Hubby who, as luck would have it, was...

Today I've had a delivery from Healthcare at home and Tena. I've got boxes of TPN, medical equipment and continence products in my hallway...it looks a bit like a warehouse!  Now I've got to get the refrigerated stuff up 2 flights of stairs to the medical fridge in our loft room but I think I will leave the others for Hubby to lug about when he gets home.  NB x

Well today has been a monumental day in my journey to recovery. I actually attended an outpatient appointment at St Marks. 'So what?' you might say. Well, it's significant because I've never been well enough to attend one for months. I'm usually ill and already an inpatient when I'm due to see Dr7 in clinic, so to be able to go today (and not get admitted!) is quite something.  It has been a long old day though. The appointment was at 3pm so I had to leave just after 1.30pm as it takes around an hour to get there and I wanted to allow for bad traffic, parking etc. the journey was fine but it took me over 20 minutes to get a parking space. I drove round and round I don't know how many times until I finally got one.  So going into the clinic I am sent for blood tests and asked to give a urine sample. After this I see the dietician and then finally Dr7. By the time I had finished with everyone it was nearly 5.30! Everything was fine. They are going to increase ...

It's been a while since I last posted. I've been ok- not back into hospital so that's always good- but very tired. By the time I've fed the kids, done reading, homework, baths, put them to bed etc I'm usually so exhausted that I'm straight to bed myself. Plus the longer you leave it the harder it is because you have so much to write that you can't face doing it.  I have started to write a catch up post but thought that I would just post a short one tonight about my day. I had an appointment at the local community hospital with the incontinence nurse. I'm still not 100% continent and when I was last in hospital my specialist pouch nurse called my GP to get them to refer me. That was weeks ago and that's how long it has taken to get an appointment. Luckily I have a supply of pads at home to keep me going otherwise it would have cost a small fortune buying tena pads.  I wasn't sure what to expect from the clinic but I certainly didn't expect to ...

Wow- it's been a while. Partly because I have been busy with Hubby and the kids, partly because I've been very tired and also some days I haven't felt too well (nothing new there then!) In my last blog I said that I had lots to write about and I really do. So here goes... The four of us spent the Easter weekend in Nottingham.  While I was there I got a new sign for the bathroom. Some of my guests haven't seen the funny side of it- maybe it's just a bit too descriptive!  Anyway, in the 'Poo Room' I had my first bath since the op to remove my Stoma. It was very strange to lie in the bath and not have a bag of poo floating there! I did have to be careful though as you're not suppossed to lie in water with the Hickman line so I had to make sure that the bath wasn't too deep and that I kept the top of my chest out of the water as much as possible. I guess the reason is that if it's under the water for any length of time it gives the bugs a chance to...