Jiving on Regardless

{July 28, 2008}   A change in fortune

Not long after my last post, I got a call from Lottie  – she was in alot of pain and the surgeon had been summoned to check her out: she was very panicked.

When I got to the hospital, she was in a serious amount of pain – she has lived with UC for 10 years and given birth to two children, so she can tolerate alot of pain, yet for her the pain she was in was significant so it must have been really bad.  After 2 hours of this pain, an anaesthetist had been to see her and said she needed some different pain relief, but needed her private anaesthetist to treat her.  Eventually, her consultant surgeon, Mr B, arrived and examined her.

At this point she was very scared – another of Mr B’s patients had relayed to her a few weeks back a story about how when she was just recovering from the same operation, she had developed an infection inside the wound in her stomach.  Mr B had at that time torn open the stiches in her stomach with no warning or pain relief to get to the infected area.  Lottie was very frighthened that he was going to do this to her, and he had to calm her down before she could be examined.

When he did examine her, he found nothing to suggest anything was wrong following the operation – her stomach was soft and her stoma and the wound drain were both indicating no issues.  He determined that the pain was being caused by the fact that in the previous 24 hours the epidural had been turned off a number of times because of her low blood pressure.  He spoke (by phone) with her consultant anaesthetist and they agreed to put her on a morphine pump.  He left instructions with the nursing staff to get the on-call anaesthetist to set up the pump and administer the morphine.

For whatever reason, it took over an hour to get the anaesthetist to attend – by which time she was screaming out in agony.  After more discussions and another discussion by phone with the constultant anaesthetist, he eventually agreed to adminster some morphine immediately.  This took the edge off the pain and calmed her down enough to be able to talk again, but she was still in pain.

After another 30 minutes, the morphine pump was finally set up, and she was able to self adminster the morphine 1ml at a time every 5 minutes.  This should have taken less than an hour to bring the pain totally under control, but it was only after 2 hours and visit from another anaesthetist (who agreed to up the dose to 2ml every 5 minutes) that she finally started to feel the pain recede.

She is now more comfortable, and hopefully able to sleep a little.  The pain that she was suffering was bad enough, but the anxiety caused by the ridiculously long time it took them to get her treated has set her back somewhat in her recovery.  I hope that this brings things back under control, but I will not know for sure until tomorrow when she is seen by the doctors again.


{July 27, 2008}   A quick update

Lottie is still in hospital, so I am giving a brief update to let people know how the operation went.

We arrived at the hospital at about 8am on Friday and after a number of checks by various medical staff, she was taken down to theatre at about 12pm.  She came out of theatre at 5pm, and then spent three hours in Recovery.  During this time, I spoke to the surgeon and he was very pleased with how the operation had gone (and himself!!).

She eventually came back to her hospital room at about 8pm – very tired and cold (she had very low blood pressure and had had 3 units of blood while in theatre).  She had an uncomfortable night on Friday as she was on reduced pain relief medication due to the low blood pressure and the constant monitoring that meant the was kept awake most of the night.

On Saturday she was still very tired, but pretty much ok as her blood pressure had stabilised and the epidural had been ramped up to an effective level again.

Today she is still very tired – she does not cope well with interrupted sleep at the best of times – but she is already focused on coming home.  The consultant thinks that she could be discharged as soon as Wednesday because the operation was so successful.  The stoma is functioning well and seems very relaxed about it. When  I saw her this afternoon she was sitting up in a chair, so already starting to move around.

So far so good.

Okay, this is my last blog with an intact bowel, my last blog with Ulcerative Colitis, my last blog after ten years of illness.

At this moment in time I feel very calm and am now at 9.30pm going to wait for my Mum to arrive and then head to bed for what I hope will be a good nights sleep (although probably not given the horrendous heat this evening).  I have that calm before a storm feeling.  I can feel that panic is somewhere deep inside me but I am doing everything I can to stop it from setting in.  I know that tomorrow morning it will just be go, go, go from the moment I wake up at 6am and therefore I shall hopefully have no time to think and shall just get on and do.

This time tomorrow it will all be over and I shall be on my way to a better life – hurrah!

{July 24, 2008}   Time Changes

Today I have had two phone calls to change the times of my admission and op! I wish to God they would make up their minds as to what I am doing.  As it stands at present I am to be at the hospital at 7.30am (as opposed to the original 11am).  I shall have an enema, have my stoma sited and shall then go down for surgery at 12pm. This change means that I have had to waylay my plans to spend the morning with my kids and have had to get my Mum to come down tonight to be here first thing.

Tomorrow is going to be a long day – thank goodness I shall be asleep for most of it 🙂  I have to get up in time to have some cereal, toast and tea in the morning before 6.30am.  I don’t eat in the mornings at the moment as it sets me off and I am normally too busy on the loos but supposedly I have to eat as it aids recovery and makes the anaesthetic settle better.  I am then allowed a last drink of water at 7am and will be nill by mouth from then on. So that’s tomorrow.

Today, so far, has been lovely.  I packed mine and the kids things this morning and then had to do a quick trip to Tesco for more underwear and PJ’s for my kids ( I am having to pack two bags, one for Grannies and one for Nanna’s and Grandad’s and they also need stuff here).  I then invited my friend and her three children round for lunch and we have been sat outside in this glorious sunshine from 11am until 3pm.  It’s been very relaxed and the children have had a lovely time which is what I was aiming for.

I am now going to wrap my kids presents, which they shall now have this evening as I won’t see much of them tomorrow 😦

Right now I am very cool, calm and collected and actually looking forward to it.

It is now 3pm and today has been good.  Good from the point of view I have got everything done (well nearly), my pre-ops went well and I have been relaxed all day.  I have also only been to the loo three times today – bonus!

I dropped the kids off at the child minders this morning.  She lives on my street so it is really handy and B has been going to her since he started school, one afternoon a week.  I have known her for years as she used to manage the nursery B went to and which W left yesterday.  On that note, yesterday was quite emotional, something I didn’t expect.  It made me tearful to watch B go in for his last day of Reception and I was tearful again when I collected W from nursery as it was his last day there and the last time I shall ever go there.  I have had B and W at the nursery so it was quite a milestone to say goodbye and one I didn’t acknowledge until yesterday afternoon.  It was also difficult this morning as although W knows the childminder he hasn’t actually spent any time with her other than when we have collected B.  He was quite affronted that I dained to leave him this morning and we had a few tears, however I know he will love being there, especially as he is now with his big brother.

After dropping them off I went to the library and stocked up again.  I am going through books ever so quickly at he moment.  I then had to get my pre-ops done.

My weight is a good 8.5 stones (54 kilos).  I thought it was going to be higher than that as I feel like I have put on quite a bit of weight but I think it is actually bloating.  I had swabs for MRSA in order to try and prevent any problems,  supposedly it is something that lives in most peoples throats and noses causing no problems at all but when it enters a wound it can be lethal so clearly they are doing whatever they can to prevent it.  I also had blood tests done.  It is highly likely these will come back showing a low blood count but the nurse assured me that this will just mean they will cross match some blood to ensure I can have a transfusion after the operation in order to ensure my levels are good enough to aid recovery.  I’m not too concerned about this.  After my pre-ops I met with my stoma nurse in the corridor.  It turns out they had forgotten about siting my stoma!  She is going to do it when I am admitted on Friday morning.

After my trip to the hospital I went to stock up on toiletries, namely antiseptic wipes and the like.  There is no way I am contracting any post operative infections or MRSA if I can help it so all preventative measures will be taken.  I shall not be allowing a member of hospital staff anywhere near me unless I have seen them clean their hands!

On my shopping trip I got diverted to a sports shop as I really needed a pair of trainers (which I got!).  I then committed the ultimate sin according to my husband.  Little football strips were discounted and my sons love wearing their kits.  This drives me batty as I prefer to see them in more ordinary clothes, but boys will be boys.  I wanted to buy them something for when I go in so I decided on these kits.  B has an England strip, Ireland strip (N’s family are Irish) and a Liverpool strip as N supports Liverpool.  W has an Ireland strip and a Tipperary Hurling kit (the family are from Tip) which he thinks is a football kit.  I decided to get W a Liverpool strip as he is constantly wanting to wear B’s which causes umpteen arguments.  I then sinned.  B has been going on and on about wanting a Chelsea strip, mainly because the colour (blue) will go with his football boots which are also blue (he has a thing about colour co-ordination).   I thought N had accepted this and I really thought it would be alright, after all you can’t force a child to support a certain team and there is plenty of time for him to make up his mind as to whom he will ultimately support, he is only five.  This is in my opinion – clearly not N’s.  He feels very strongly that “this is how mistakes are made when children are introduced to crap teams at an early age”  ROFL  Needless to say, I don’t get this male thing but clearly I am wrong and I have upset the balance of civilisation by encouraging my son to support Chelsea rather than Liverpool 🙂

As do most women, I got my own way – B will be receiving a Chelsea football srip on Friday morning 🙂

Other than this excitement I have done nothing but cleaning.  My house now sparkles and I have even made frozen meal packs for my husband.  These consist of freshly chopped veg and some meat i.e chicken stir fry; prepared fresh veg and chicken in a bag, labelled, just ready to defrost the night before and cook.  I haven’t precooked everything as I haven’t had the time or energy but I figured this was the next best thing. At least he won’t have to think about what meals to put together or do the preparation, he can just grab a bag and go.

Right, I am now going to pack for my hospital stay and the kids stay at their Grannies (Mom likes to be called Grannie, rather than Granny).

About 48 hours to go!

{July 22, 2008}   Going, going……nearly gone

This afternoon my children are in childcare and I had a list of things I wanted to do but when it came down to it, for once, I couldn’t be arsed!  I thought about them and then thought no, sod it, I desperately need some me time.  Some time to stop doing and just be.  I have had a nap (well, a lie down with my eyes shut just chilling – sleep evaded me) and then I have just spent the last two hours with a friend drinking tea and chatting – it was lovely.  I really needed some time to switch off from what was happening this week as it was all getting a bit overwhelming. The only problem now is that I am high as a kite on caffeine and starting to feel very odd (I normally drink de-caff but forgot my t-bags and had another sod it moment!) (note to husband, yes they are ‘sod it’ moments but they are very mild so don’t worry!)

Before I carry on, please note, I am probably going to repeat myself as I can’t remember what I wrote yesterday and can’t be bothered to look – however, repetition helps display state of mind which I guess is the entire purpose of blogging!

Anyway, to continue.  People have been really, really lovely to me this week.  I have had presents through the post (thank you Ali), cards from friends, lovely text messages and emails and various out of the blue phone calls from people who rarely if ever phone me.  This is all lovely and so appreciated but it is also making me feel quite overwhelmed.  The thing is I have been in hospital before, for a week or more each time and have been far, far poorlier and each time very few people have given me a second thought (ahhhh!).  This time, because there is an operation involved I have people cooking for me, buying me things and all sorts – it’s fantastic but also makes me feel that because everyone is taking it so seriously perhaps I ought to be more worried!  I guess people find an operation more tangible.  They can understand what is involved if only in a basic way i.e that sausage looking thing in her body is going to be taken out, whereas before when I have been admitted it has been very hard for people to comprehend that it was because I was going to the toilet 20 plus times a day in complete agony, they probably thought “tummy bug, she’ll get over it”.  I guess the seriousness of the op has woken people up to the fact that I am actually very ill and am having to go through this as a result.

Oh, it’s a weird time. I know I am blathering on but it is such an enormously difficult thing to get your head around.  I think that Friday will actually be the biggest day of my life so far.  Don’t get me wrong I have experienced some wonderfully huge things and some devastatingly huge things (marriage, childbirth – deaths), but this is different.  This is not a moment, it is not something I have wholeheartedly set out to do ro ever expected my life to involve, this is something that has come about as a result of something which has had an enormously negative impact on my life.  On Saturday morning I won’t have Ulcerative Colitis anymore.  I won’t have Ulcerative Colitis anymore.  I won’t have it. I won’t have this horrible, nasty, painful illness anymore.  I won’t have all this pain, I won’t get pins and needles from sitting on the loo for so long, I won’t have to be constantly worrying about whether I smell or not, I won’t have to feel guilty that I’m not giving my best to my husband and my children.  I won’t have Ulcerative Colitis anymore, I won’t have Ulcerative Colitis anymore.  It will be gone.

Wow – that is HUGE!

{July 21, 2008}   Things to do, people to see

We had a lovely weekend celebrating my sons birthday.  He has thoroughly enjoyed himself.  It was nice to be busy doing fun stuff with the kids although I confess I found it completely exhausting.  I have been feeling absolutely shattered this weekend and in bed by 8pm every night.  I have been getting really bad headaches which I think are as a result of tension and extreme tiredness, I am ridiculously low on energy.   Today I have tried to have a nap this afternoon, whilst my son is asleep, but recently I have been unable to relax enough to fall asleep in the day despite feeling truly exhausted.  I guess it must be stress but it must be sub conscious stress as I can’t say I am dwelling on anything very much, well, apart from cleaning, I am pretty obsessed with cleaning at the moment!

I keep having weird dreams too. All about being out of control or things hurting or attacking me that I can’t stop.  It’s pretty obvious what it is all about, it just baffles me that you can feel quite calm about something and yet internally I must be quite anxious about the whole thing.  don’t get me wrong, I have moments, hours even of quite obvious anxiety about my, and all that will follow, but generally I think I am coping quite well – four more days.

I found out at the weekend that my brother has been referred to a consultant as they suspect he has UC 😦  I really hope he hasn’t but at the same time I feel that my experiences can really help him and hopefully make his journey a little easy.  Saying that, I think it is a very frightening time for him to be diagnosed just as I am having the op. Still, in time, should he have it, hopefully he will see that the worst ending is not that bad after all.

I have already had a few lovely cards from friends wishing me well and a very surprising phone call from my brother in Australia who hasn’t phoned me in the two years he has been out there (we do speak on email, MSN etc though).  It was lovely to speak to him and nice to know that he cares that much.  It is funny, I have been much, much, much more ill than I am at present and have spent a week in hospital a few times and nobody really bothered with me.  Now, I am having an op it seems people are taking my illness all the more seriously – very strange.

This week I intend to get my house scrubbed and polished like a shiny new coin.  I like tidyness and order at the best of times but when I have something big coming up I definitely verge on the obsessive.  I am also going to go the library to stock up on books, do a supermarket shop to make sure my husband is sorted for a while and pack mine and the children’s things (they are going to Grannies for a week).  I am trying to do this slowly at my own pace and just plod along with it all – it is good to have stuff to do rather than sitting around waiting.

Other than tiredness my other symptoms seem to have settled the last few days.  I have only been going four/five times a day and with much less bleeding. This is a relief as hopefully my iron levels won’t be too low.  My pre-op tests are now on Wednesday morning and my op is going to be on Friday afternoon.

I guess I better go and get on – time for lunch.

{July 17, 2008}   The hospital changes AGAIN!

Good day yesterday, bad day today.  So far today I have managed to eat one Pain au chocolate and one bag of crisps.  Healthy I know.  Both of these have been consumed this afternoon as I could not bring myself to eat anything this morning.  This morning was hell.  I couldn’t get off the loo and it was so painful.  I managed to get off the loo for 15 minutes in which time I got my son to school and gave him to a friend in the car park and asked her to queue and take him in for me.  She didn’t mind, but I did – I hate doing that, I feel like I am dumping my child and it is completely out of my control.

Still, despite my bad day I have managed to make a birthday cake for my little man who is five tomorrow. I have also made some cakes for his picnic party at the zoo on Saturday.  This afternoon I have been wrapping gifts for various people who have birthday’s and other occasions in the few weeks after my operation.

A friend is collecting my oldest for me today and my youngest is at nursery for the afternoon so when B is back I intend to do some crafty stuff with him as he needs to make something for a friend who is getting married and draw some cards for his teachers as next Tuesday is his last day with his Reception teachers (first year at school aged 4-5).

I digress, but whilst writing the above paragraph I have had a phone call to say that my consultant has changed his mind and has now booked me in to have my op in the local NHS hospital as originally planned as they have an ITU (Intensive Therapy Unit – used to be an ICU – Intensive Care Unit – why the various abbreviations I shall never know).  God, honestly, I swear that sometimes dealing with the NHS is like dealing with a bunch of morons.  IT is VERY VERY important that you know what you are talking about and that you voice your opinion.  Basically, I believe my consultants secretary made a cock up and has been trying to cover her tracks and sort it out.  When I mentioned to her that Mr B had said he didn’t want to do my surgery in the private hospital she obviously thought ‘shit, I better check that’, has done and has now had to change everything!  Fortunately, that is fine by me in terms of the logistics but I now have to wait once again for written confirmation and the details of timings and pre op tests!  She did say that my op would be on Friday afternoon. My op better go more smoothly than the booking of it!

This has now set my anxiety off so I had better go and relax – grrrr, I just want it over with now.

{July 16, 2008}   Good friends

I’ve had a nice day today.  It started off with a visit from a lady I have recently become friendly with. Her two year old son gets on beautifully with my little one and so we spent the morning chatting away with the sun brightening my lounge whilst the boys played in the garden – lovely.

This was then followed by a phone call from my sister.  I haven’t spoken to my sister much recently as she has been very depressed (she has severe OCD) and is quite difficult to get hold of when she is hiding away. Yesterday her son, my nephew, who is 2 and a half, had an operation on his penis to re-site the hole which had formed on the side rather than on the top.  This was really horrible for my sis as watching your child go under anaesthetic and into surgery is horrendous.  I remember it only too well when my son did it and I would much rather go through an op myself than watch my child go through one.  Anyway, all went well thank goodness.  I had arranged for a box with a balloon, a power ranger head (my nephew loves SPD Power Rangers), a teddy with a plaster cast and plaster on it and some sweets in it to be delivered to their house.  She rang to say that it had been the most lovely surprise when they walked in the house and he was very excited to see it all – they had gone home to an empty house so I guess it made him feel special, which he is. I was really pleased I had made the effort and was more pleased to finally have a conversation with my sister (and my nephew who now holds a lovely conversation on the phone).

Then, this afternoon another friend turned up with a birthday present for my son AND a spinach lasagne big enough for 3 meals!!!  I can’t believe how thoughtful this was, especially as she did spinach as my iron levels are low.  No one has ever done this for me before and it is lovely. The thought of not having to cook a meal tomorrow is blissful!

All in all I have had a lovely day and am feeling much more positive.

{July 15, 2008}   Change in Hospital – eek!

I am feeling quite anxious and all jittery. I have finally received confirmation of my operation date and admission details but for the wrong hospital!  There must have been crossed wires and instead of having the op in my local NHS hospital I am now having it in a private hospital 20 miles away! I am not happy about this.  I am not happy as a) I had myself geared up to be in my local hospital, which in terms of visitors was going to be much better, b) The other hospital is going to be costly in petrol (£1.19 per litre here – $2.37) and require a lot more time to get to and from, which will make N’s life more difficult and c) my consultant had said that he didn’t want to do it in the private hospital as they don’t have Intensive Care Units.  According to his secretary he is now perfectly happy to do it at the private hospital and it is too late to now rearrange if for elsewhere. I guess if the consultant is happy to do the surgery there then I am happy to have it there as it will certainly make my stay a lot more comfortable, it just makes me anxious that things have changed.

I’ll get over it.

et cetera