Jiving on Regardless

{August 24, 2008}   Yet another trip to the hospital

Yesterday was yet another pretty rough day.  After five doses of Flucloxicilin 500mg I started throwing up.  It was a relief really as I had spent the whole day feeling sick.  I called the out of ours GP and explained what had happened and this new symptom and he asked me to go down to the clinic at the hospital.  Yet again, I took another painful journey to the hospital (I had so much hope that these journeys were going to end).  The GP checked me over thoroughly and concluded that it was a reaction to the high dose antibiotics and changed me to a lower dose and a different brand.

I feel a little better today but not much.  I just feel kinda like I have the flu, tired, achy and uncomfortable.  I have had terrible lower back pain but my pain killers have eased that a little this morning.  I can’t wait to get off of all of these drugs and experience that ‘well’ feeling that so many people have after this surgery.  Right now I am back to hoping but fortunately I am not depressed or stressed with it, just a little disheartened.

I am finding it difficult to motivate myself but I guess I should give myself a break as I am pretty ill.  It is 11.30and I am still not showered. More importantly my bag really needs changing.  My bag still feels terribly uncomfortable and itchy.  I think the fit is still wrong and I have a feeling I need a different type. Fortunately I am seeing my Stoma Nurse again on Wednesday at clinic so she should have everything to hand and therefore able to get this resolved.

This weekend is a bank holiday weekend.  Yet another one ruined by my illness. However, we have a good friend coming round for a roast this afternoon and her and my husband’s banter never fails to make me laugh so hopefully I shall perk up.

I really ought to get moving.


{August 23, 2008}   Can’t face the bag

Just had to tell someone.  I am feeling sick at the thought of changing my bag this morning.  I rarely have any problems with gore as I just deal with it and get on with it but the thought of having to drain my infection site after yesterday is making me want to hurl.  I can’t stand the thought of that yuck being in my body.

Big, deep breaths.

N is on standby to catch me as I am likely to keel over. Fortunately he had to help me change my bag in hospital so he knows what to do.  Poor man – I am very lucky.

{August 23, 2008}   On and on and on

The last week has been a bit of a downer.  Each day I have progressively felt worse with nausea, headaches and general aches and pains, especially in my back.  I also found area around my stoma uncomfortable.  I put this down to just dong a little more and general recovery.  I  also thought at first that my stoma had shrunk and I hadn’t re-sized my bags correctly so I called my stoma nurse for advice on Wednesday.  On Thursday morning she called me back and arranged a home visit to check everything was okay.  By Thursday lunch time I was feeling so sick I called NHS Direct for advice.  There were no signs of problems and so we concluded that it was my painkillers causing the nausea etc and that I should get an emergency GP appointment for some anti nausea pills.  This I did and he duly prescribed them for me.  After taking one that evening I actually felt much better.

The next morning, Friday, I woke up feeling very tired, uncomfortable around my stoma and nauseous again.  I wasn’t concerned though as my Stoma Nurse was due at 10am and there were no signs of anything untoward.  She promptly turned up and we found that I had indeed sized my bags incorrectly.  We assumed that the irritation was from my now four week old stitches which had still not dissolved so she removed them. Within seconds of her removing the bottom stitches the area around them started to weep and then it started to pour! Yep, I have quite a nasty infection which had been sitting around my stoma, under the stitches – it was gross!  Once they were removed it found a hole to escape through.  My blood pressure plummeted and I fainted into my nurses arms – thank God she was there!

All of yesterday I felt incredibly unwell.  Every time I moved I swooned.  My Nurse arranged for the GP to prescribe me some broad spectrum anti biotics which he did and I was told to rest and drink lots of water.  By the afternoon though I was feeling so, so much worse that I arranged yet another emergency GP appointment. He looked me over (I am going to digress for a minute – this GP is a rather attractive South African bloke.  when you walk into his room you are bowled over by his aftershave which is really strong and for some reason he always sits facing you with his legs wide apart, as blokes often do. He wears the tightest trousers and every time I end up blushing as my eyes are drawn like a magnet to his nether regions – it’s impossible not to look! Fortunately he is not at all sleazy so I am sure he doesn’t realise but it does make me giggle).  He advised rest, water and that I am to go in on Tuesday for a blood test as he could see just by looking at me that my blood count is low, possible too low.  Basically he concluded that I was feeling so ill as I have an infection, i’m anaemic, I am four weeks post op major surgery and I have naturally low blood pressure which has dipped much lower as a result of all of these things.  It is possible I might have to go in for an Iron infusion, but I have been expecting that since I was discharged and would actually be quite relieved if they did it.

So, there we have it, the saga continues and yet again I am left dregging out my hope and just praying for the day to come when I shall no longer be in pain and can finally get on with my life as a healthy and happy individual.  I confess I am feeling quite down at the moment as I just feel that the end is so near but it is like climbing a mountain to get there.

Hopefully my anti-biotics will kick in today and I shall be able to enjoy some of the bank holiday weekend with my family.

{August 18, 2008}   Love and Laughter

First of all a funny story, well actually, one of those which could have been awful but turned out okay and is therefore funny. On Saturday morning my four year old niece woke having had a dream that her and her Daddy could fly.  She very excitedly told her Mummy (my little sis) that she couldn’t wait to go down stairs as her and Daddy would beat Mummy as they could fly.  My sister, in first thing in the morning Mummy mode just replied “that’s good”.  L ran to her Daddy and told him that they were going to beat Mummy down the stairs as they could fly.  Her Daddy, also being in first thing in the morning Daddy mode said “that’s right”.  The next thing they hear is a bump and a scream.  They ran out to find L at the bottom of the stairs sobbing “I didn’t fly”.  C, my sister, seeing that no damage had been done, was in hysterics and couldn’t believe her daughter had actually attempted to fly down the stairs.  She asked L “Did you just stand at the top and jump” and L replied “No Mummy, I did it properly and ran up and jumped but it didn’t work” lol This had me in hysterics too.  Bless her heart she had so believed it that she had gone so far as to take a running jump!  I think the only thing that saved her from damage was the fact that she believed she was going to fly and was therefore relaxed when she landed.  It could have ended so differently but fortunately she was fine, although my sis said that she sat staring into space in shock for half an hour until she fell asleep, she really couldn’t believe that she couldn’t fly!

This is one of many things that have made me giggle this weekend.  My family are just hysterical and have me in stitches constantly and I mean constantly.  The banter between the boys is just exhausting and I flopped into bed last night at 9pm truly shattered. My stomach was really hurting and I know it was from all the laughter 🙂

I am going home tomorrow.  I am looking forward to seeing N as it will have been five days since I last saw him and I am missing him tonnes. He has been away on a dance weekender and actually came second in the Newcomer Jack and Jill comp – I am dead chuffed for him.

Before I leave tomorrow I hope to have my tattoo done, although I might not have time as I am heading to my sisters for my pampering. Regardless it should be a nice day and ending up at home will be great – I need to be back in my own space now.

I have finally managed to reduce my painkillers a little, not much but it is a start.  I can feel the difference but it is tolerable. 

I am now going to go and watch even more Olympics.  I have never watched so much before and I am loving it.  I am knitting and watching Great Britain win medal after medal, the rowing and cycling have been awesome. My recovery was well timed for this.

{August 15, 2008}   R&R,TLC and a lot of laughter

I am, at this moment, surrounded by a mass of fluffy white cushions and duvet, in a delightfully white, with a splash of pink,charming country bedroom – I love it.  It is my Mum’s bedroom and it is like sitting in a little bit of heaven. In order to write this I have commandeered my little brother’s laptop and am quite comfortable 🙂

I am having a really nice time at my Mum’s. It is lovely to be with my boys all day but not have to do anything for them, other than cuddles and the odd walk and play.  My Mum takes care of all their needs which is just what I need right now.  We have been spending most of our days at my Mum’s work place. She works at a school for boys with learning and behavioural difficulties which is actually the most incredible mansion set in the heart of the countryside, miles away from anywhere.  It is immaculately decorated (thanks to my Mum who manages all aspects of the domestic running of the school and grounds) and is amazing to spend time in. My kids love it as there is every toy, computer, games console and activity imaginable in the place and I love it as I can sit in a sun drenched room, on a beautiful big sofa and chill out (in front of the flat screen with Sky and masses of DVD’s if I so choose) whilst they run around the building and outside perfectly safe.  There is a magnificent lake to sit near and they have sheep and chickens which my boys love feeding and watching.  It really is idyllic.  I feel so relaxed.

It is also lovely being at my Mum’s house as my three youngest brothers live there (22,16 & 14) and one of my other brothers and one of my sisters live near by and are always popping in.  My family have a wicked sense of humour (something I myself lack but can appreciate in them) and they have me in fits of laughter constantly.  I can’t explain what they are like adequately in words but they are absolutely hilarious and when all together it is just like sitting in the audience of a comedy show. The laughter is much appreciated at the moment.

All of this is contributing to me feeling better every day. I am missing N loads, as he is not here but away on a dance weekender, but we are speaking and texting a lot and despite this it is nice to be away from home and somewhere different.

My energy levels are improving slightly and I am now sleeping better.  I can walk further with less breathlessness everyday and although no where near as active as I would like, I can see an improvement. My Stoma has been bugging me as it itches (probably the stitches) and I think I have been putting it on slightly badly as the bag feels very cumbersome. The contents have also been very watery the last few days, although my diet is the same, which means I am emptying it every hour or so – a right old chore! Other than that the pain is improving (still not reduced meds though) and I am feeling quite bright.

I have actually named my stoma now. We are huge Simpsons fans in my house, watching it most evenings before the kids go to bed – they love it (but at times it has to be turned off as the content isn’t appropriate fo their ears!).  My stoma is very noisy and burps and passes wind like an old man so we have named it Homer the Stoma courtesy of N’s suggestion. This was very appropriate my first night here with my family as the bloody thing wouldn’t shut up.  I can’t get over how noisy it can be at times. Everyone reassures me that it sounds no different to a normal tummy rumble but I don’t believe them.  I am dreading this happening in company I  am not so open about my condition with.  I guess I have to bare in mind that it is temporary and at the end of the day not that big a deal.

I haven’t had my tattoo done yet but I shall as soon as I can find a place to do it. I am out in the sticks at the moment so it might have to wait until next week.  I am also yet to have my pampering from my sister but she assures me it will happen this weekend – I can’t wait.

It is now 9.30pm and I am wide awake after being up since 6am and having had only a 1 hour nap today – the surgery has definitely changed some things 🙂

{August 14, 2008}   My current little obsessions

I finding myself obsessively thinking about things at the moment.  I guess it must be because I have the time to.

Currently my thoughts are pre-occupied with the following:

A Tattoo.  When I was 21N and I went on our first holiday together and during that holiday we got into a discussion with some ‘holiday friends’ about tattoos.  They all proclaimed me not the type to ever have a tattoo, including N and didn’t think I would ever be gutsy enough to have one.  I can come across as very straight laced and fairly traditional women but actually I have an incredibly naughty and rebellious part to my nature and this comment set this part of me off.  I promptly got a tattoo once I returned from holiday much to N’s shock (and a little bit of horror).  Being 21, carefree and, for a moment, healthy, I gave no thought to my future.  At the time my tummy was merely a tummy, flat, well toned and I was of an age where bikinis  and midriff revealing tops were ok and in fact en vogue.  Within a year this was to change with my diagnosis of UC and further down the line two pregnancies.

I wasn’t all that taken with my tatoo and in fact regretted it as a blemish on my body and in my character.  However, over the years I have loved it.  It brightens up an otherwise dark area of my stomach.  I have seen it loom large on my pregnant tummy and shrink tiny with my enormous losses of weight through my UC.  It is always fun to see Dr’s and Nurses faces when they come face to face with it.  It was great when I had to have my stoma sited as it presented a new challenge to the team and the fact that they narrowly avoided during surgery makes me smile.  It is hidden under my bag at the moment but it is fun to think of it coming back to life again once the surgery is over with a new ball to play with (my stoma scar).  Ultimately though my tatoo reminds me that there was once a time when my tummy was merely a tummy, a toned, slim, beautiful tummy, unstretched by babies and unfettered by surgery – I love it and I wouldn’t be without it now.

So, I have decided I desperately want another one.  It is to be three little hearts on my wrist under my watch band.  That way I can hide it when I want to but reveal it when I want to too. It will represent the three greatest loves of my life N and my boys.  This time has made me realise how important and amazing my three men are.  I have been through this for and with them and I want a permanent reminder of this time and of them.  I feel very emotional about this, which is kind of like me but kind of not.  Anyway, I intend to have it done as soon as possible.

Another obsession is a tea service and fairy cake stand – yes, you did hear right. I have been quite into the idea of having a fairy cake stand for a while now.  I love baking and I love the idea of presenting them on a beautiful tray.  Reading Brenda’s Blog she showed pictures of the most beautiful tea set and I can’t get it out of my head.  I love tea sets but have always thought of them as antiques and can’t stand the thought of drinking out of 100 year old cups. I also love tea, my Mummy friends and I drink a lot of it!  Since appreciating that you can actually buy brand new but pretty and traditional tea sets I want one! I can think of nothing better than afternoon tea with my friends out of a beautiful tea set with a cake stand full of home made cakes.  My husband thinks I have gone bonkers and aged forty years – but what is wrong with introducing a bit of girly class to an otherwise everyday routine?  I think it’s a great idea and I now have tea set and cake stand on my wish list.

My next thing is knitting.  I love knitting but haven’t done any for about three years.  I got everything out yesterday and am embarking on knitting a little hat, glove and scarf set for my friends baby which is due in December.  Knitting is so relaxing and fulfilling, especially when all you can do is sit around.  I got stuck in and it took a while for the old memory cogs to kick in (with a bit of help from the Internet) but I am now knitting and pearling like a gooden  – love it!

Right, I ought to stop waffling and get myself ready.  I am off to my Mums for a few days today and need to get packed and tidied. I am looking forward to getting a change of scenery, to seeing my brothers and sisters, spending some quality time with my Mum and having all of my beauty treatments and my hair done so I can start to resemble me again.  My only problem at the moment is clothes.  I need to wear loose fitting stuff which isn’t a problem as I have lost about half a stone if not more and everything is loose fitting but nothing feels right.  That will have to wait until another time to be rectified though.

{August 13, 2008}   So Slow

I have just spent a few minutes catching up on blogs and am feeling a bit crap.  Carmen (another blogger – see blog roll) had her op the day before me and is back at work already!  I can’t get my head around that at all.  I can barely walk 100 yards without feeling like I am going to collapse let alone commute to a job and work all day.  I definitely can’t even manage to look after my own children all day.  I realise that a desk job is not as physically demanding as caring for children which must help but I really don’t think I could even get my brain in gear enough to do any kind of job.  I am still on all of my painkillers although I have dropped the nighttime dose. I have tried to reduce with no joy, I just end up too uncomfortable.  I feel a tad frustrated that my recovery isn’t going as well as others.

I guess it could be down to my anaemia.  I know for sure that this hinders recovery and doesn’t help in terms of energy either.  When I stand up I have to do so really slowly as my head goes all woozy and I feel feint. After a few seconds this settles and I can walk.  When I walk up the stairs or any distance my heart beats like I have just run a mile and takes a few minutes to settle down again.  I even feel feint when I lie down and every time I move in bed I feel like I might feint – a weird feeling when lieing down.  This is incredibly annoying and must be the anaemia (possibly low blood pressure?) but I am desperate to feel this rush of energy that so many report.  I know that everyone is different and everyone recovers in their own time but annoyingly my own time is very slow!

N has to go to the US for a business trip for five days in a months time.  My recovery is so slow that I don’t think I can manage five days on my own, taking care of the children that soon.  I have therefore had to arrange for my Mother-in-Law to come up and help me out.  I am hoping that by then things will have improved massively and I will be okay but as things stand at the moment I doubt it.  It takes a good three months for iron tablets to sort anaemia out so there’s just no telling.

I’m whinging aren’t I?  I’m sorry. I feel perfectly happy really just a little bit useless as far as my day to day life is concerned.  I am trying very hard to convince myself to enjoy this time whilst I have it as I doubt (and hope) I shall ever have so much time to sit, read and watch films again!

Right, I have to go sort my bag out, the damn stitches are taking an age to dissolve and are driving me mad with itching!

{August 12, 2008}   Moving along

I read many other peoples blogs.  I have them all set up on my Google Reader so as soon as they post I know about it.  I don’t comment on all, but I do read them.  Recently I have been moved by Brenda’s blog.  It is odd reading someone go through almost exactly the same emotions that I was experiencing a few weeks back and even more odd to be sat here now reflecting on them and the operation being over – time really does fly.

Another Blog I am moved by is Ali’s.  Ali and I have shared many ups and downs over the last three years, having known each other prior to blogging.  I am so happy to hear she is now in remission due to Infliximab and I hope so much that the Infliximab keeps working and it keeps her this way for a lot longer.  I am also hoping her poor hubby goes into remission soon. Ali is quite light hearted about the fact she and her husband have UC but the reality must be incredibly difficult and I think they are both amazing for carrying on with their lives so well, with lots of smiles. I hope they both have some better luck now.

As for me, I am good.  I am seeing little improvements everyday and although they are only little, which can be frustrating, I am tryng very hard to focus on them and keep in mind that the only way is up from here.  I have taken to walking around my street twice a day.  This is a pathetic distance but I tried to go further on Sunday and it wiped me out.  I can’t believe at how out of breath I get and how much my back hurts just walking that measly difference.  However, I have started to feel a lot better since doing it so there are definite benefits to walking around and gently getting some exercise.  My back hurts less and less as the days go by.  I am just so thankful I was very fit and muscularly strong prior to the op. I have been astounded at how hard it is to hold myself up with good posture. It takes huge effort and lots of deep breathing but I am determined, I shall not let this op ruin the posture I have worked so hard to improve for my dancing.

Talking of dancing, this weekend is a hard one for me.  N and I had booked to go to Blackpool for the weekend for the World Country Dancing Championships which includes a room for West Coast Swing with visiting US pros John Lindo, Michael Kielbasa and Jennifer de Luca.  I am so gutted not to be able to go, particularly as I have not seen John Lindo but I love his stuff and have watched all of is You Tube videos.  It is going to be a good one and I can’t be there 😦 I just hope he comes back next year.  N is now going with a good friend of mine. I have insisted he go as he needs a break and there is no point in both of us missing this event.  It is weird though as it is the first time N has been on a social break without me.

Whilst this is going on I am going to stay at my Mums for a few days with my two boys.  This will be lovely.  My brothers and sisters are always popping into my Mums (three of them still live with her) and it is always fun to be around them.  My sister is a qualified beautician and is going to give me a maniped and a much needed eyebrow shape.  I think I might book an hair appointment too as my hair looks rough.  I am getting to the point where I want to look well again and all of these things help.

As for feeling well I can’t say I am feeling much better than I did before the op which is disappointing.  I know that this is mainly down to the fact that I am still anaemic and therefore I am not feeling the rush of energy that many people report post op.  However, I remain positive and hopeful that I shall get there and before too long I shall be feeling enormous benefits from having had this op.

In the meantime I continue to wade my way through piles of DVD’s 🙂

{August 9, 2008}   New Friends

I have mentioned before that I had heard there was another lady, a parent at my son’s school, who has been through the same op as me in the last couple of months.  I discovered this as we have mutual friends.  Since then I have been encouraging our friends to put us in touch with each other and last night we finally had our first conversation.

R is a lovely lady whom it turns out has stood in the same Playground area as me for most of the last school year as her oldest child was also in Reception, although in a different class to my son.  How amazing is that?  R had a major flare up out of the blue, her first in a couple of years, and after two weeks in hospital trying to get it under control they finally told her she had to have her bowel removed.  She is having a three stage op so at this point she hasn’t got a pouch like me.  She had a rough time bless her and ended up in hospital for weeks with infections and eventually having to be drip fed as she couldn’t eat.  Fortunately, 8 weeks post surgery she is feeling much better and is out and about enjoying her new found health.  We had such a lovely conversation and I am sure we shall become friends – it would be silly to pass up an opportunity to have someone so close by who completely understands what I am going through.

I have directed her to my blog (if she’s reading this I hope she doesn’t mind anything I have said) and encouraged her to get to know all of you who comment on my blog and whose own blogs are on my blog roll.  I hope she does as I am sure she will find, like me, that there are a group of great people out there always willing to help and support – you guys rock!

Moving on, this morning I placed my first order with Charter Healthcare.  I don’t need anymore bags at the moment but I was getting low on Cavilon (Barrier film) and Appeel (Medical Adhesive Remover) as well as soft wipes.  They were brilliant and talked me through everything and answered my questions really thoughtfully and patiently.  Basically, you place an order for your bags and creams etc and then there are a host of ‘complimentary’ products you can have as much of as you like.  These include; disposal bags, soft wipes, wet wipes, water sprays, air sprays (which I have coming – they send small cans of various smells).  With each order they send you out a wallet and then progressively bigger bags to carry your stuff around in.  I was very impressed with them.

Today I intend to go for my first little walk.  I can’t go very far as I still have quite a lot of pain.  It is not as bad as it was but I am still quite stiff in the middle, I get a lot of ‘take your breath away’ shooting pains and my skin is very, very sore and sensitive all over my stomach.  However, my back keeps stiffening up and I am sure this is through lack of activity so I shall try a gentle stroll just a little way down the road and back again.

I have actually dressed in proper clothes from the off today.  I had to dress briefly yesterday to go to the GP’s for more painkillers but I have actually showered and dressed as normal today.  My youngest was very surprised and kept proclaiming “Mummy, Clothes!” – it has been two weeks since he has seen me in any.  Unfortunately because of my various discomforts and obviously the bag, my wardrobe has become limited so I shall probably live in the same stuff for days, until I have the energy to go and buy a few more appropriate bits.  I didn’t buy anything before as I didn’t want to waste my money on stuff I might not need.  When the pain has gone and the swelling is down I shall then go and buy a few longer tops and higher waisted trousers to see me through until take-down.

My friend dropped round a huge selection of new DVD’s for me yesterday so time to dive in – I am going to be a film buff by the the time I am fully recovered 🙂

{August 8, 2008}   Getting better

I am having a slow day today.  The last 48 hours have seen me knocked out with exhaustion.  I can barely drag myself out of bed to my sofa which is very frustrating as I know that being more active will encourage my recovery.  However, my body rules at the moment, and right now it is saying ‘do very little’ so very little is what I am doing.

It is two weeks almost to the minute since I went down for my surgery.  I can’t believe how fast the time has passed.  I am still on all of my painkillers and sedatives at night but I am reducing the sedative and hoping to be sleeping drug free over this weekend.  I am not ready to reduce my painkillers yet as I tried yesterday and had a very uncomfortable day as a result so today I am back on full dose.  I am disappointed by this but as my husband pointed out, it doesn’t matter, as long as I am recovering and the surgery has gone well I will come off the medication soon enough, it is only a week since the painkillers started working so I guess my recovery was a little delayed.

I do wish they had given me the blood transfusion I needed.  The iron tablets are going to take months to get my blood levels back up and I am sure the anaemia is what is wiping me out right now.   I would love to be feeling the positive benefits of my surgery and can’t because the exhaustion is much the same as I felt before.  I shall discuss it with my Consultant when I see him, although this won’t be for three weeks.

Apart from these niggles my recovery is good.  My family are being absolutely amazing and rallying around taking care of my children so that I get lots of rest and peace and quiet.  I had the kids here for a night and a morning yesterday and they are coming back for the weekend this afternoon. I miss them loads and loads and it was lovely having them here yesterday but by the afternoon I did need some quiet in order to relax.  I think they may have to spend another week being ferried from pillar to post but they seem happy and are enjoying themselves and I guess what is best for me at the moment is best for all of us.  The sooner I recover the sooner we can be a proper family again.

As I have been alone and the TV has not been constantly on Cbeebies or some other kids channel I have been watching Daytime TV and movies galore.  Fortunately my friends have lent me lots of DVD’s as Daytime TV drives me mad.  On all of the programmes they just repeat themselves ten times and talk about the same dull crap – it’s mind numbing.  Fortunately today I have started reading again and have found I have enough concentration to do so therefore I shall now start to work my way through the pile of books I have – much better brain food.

Time to watch another movie…

et cetera