Jiving on Regardless

{July 21, 2009}   Signing Out

It dawned on me at the end of last week that this week, Saturday 25th July, is the one year anniversary since my operation.  My post op blogging has been sporadic but this just goes to show how well I am now – I am too busy living and don’t have time to sit and write about how good things are 🙂  Given that, I have decided that it is time to end my blog and move onto new things.

Before I go I should just wrap up a few things for those of you who may be interested.  The first thing is the issue of my bladder and the frequency with which I urinate. I saw a specialist and he concluded that I have an Irritable Bladder.  There can be numerous causes for this and it is fairly common.  In my case it has certainly not been helped by having UC and then surgery.  I have suffered from bladder problems for years but regardless it is very common post colorectal surgery.  The specialist said that he is actually ‘amazed’ that ‘they’ (the surgeons) can do this operation without completely wiping out the functionality of the bladder, as they operate so close to it and the nerve endings it needs to function.  He was quite awe inspired which once again opened my eyes to what a huge operation I have had.

The Consultant examined my pelvis and found that although my pelvic floor is strong (another surprise given I have delivered two babies and been through this op), it is oddly weaker on the left side.  He has recommended that I be referred for pelvic floor physiotherapy. I am to give this four months and put 100 per cent effort into it before I can judge if it is succesful or not.  Supposedly they get good results.  If it doesn’t work there are three medications I can try.  So, the jury is out on this one.  I am not worried.  I am relieved that it is nothing more sinister and am quite happy to trudge through the system until I resolve/improve things.

This time last year I was preparing myself for ‘The op’.  We, my family and I, subsequently went through many difficult days and weeks as I have relayed in my ‘Memory’ blogs.  However, we got here.  We have finally, after ten years, got to the point where I am as Fit as a Fiddle, as Strong as an Ox and Happy as Larry!  I don’t ever want to have to experience anything so hard and painful again, however, I have taken so many positives from the whole experience, many I have relived throughout my years of writing this blog and I shall continue to benefit from those forever.  The operation was the turning point and definitely worth it, I wish I had had it done many years ago.

My life is honestly perfect at the moment.  That’s a big word ‘perfect’ but I can’t think of another to describe how happy I am.  I have my health and my husband and two children are all healthy, something this household will never take for granted.  My husband has finally been promoted after many years of missing out because of the time and dedication he has put into caring for me and our boys to the detriment of his work.  As a result we are the most financially secure we have ever been. My kids are happy at school and happy with their lives and after a period of adjustment love having their Mummy share in their play and their days out and many activities I couldn’t be actively part of before. After some tough, tough years which often put a strain on my marriage my relationship with my husband is the best it has been.

N and I have been married for ten years this year and intended to renew our vows on our tenth Wedding Anniversary which in New Years Eve. However, we have decided that we are going to do it this summer.  On the 24th July, this Friday, we fly to Las Vegas.  It is our first holiday abroad for six years as prior to this my health prevented us from flying.  We wanted to be somewhere together (just the two of us) a year to the day from my op and be able to say ‘we made it and things are sooooo good’. On Saturday we shall stand in Las Vegas, in the sunshine, together and do just that.  At some point that week we shall renew our vows in a private ceremony for just the two of us (not an Elvis in sight!) – I can’t wait.

So, for now, I live contentedly and very happily and intend to go and focus on new projects and new interests.  I shall continue my fundraising efforts and  shall set up a page on here to update on those.  I shall also continue to work with the NACC.

I will start writing another blog as I love doing it but the next topic shall be far less serious, fun and probably not at all interesting to the majority of you who read this – I shall let you know when I start one.

Thank you for taking the time to read my story.  Thank you for all the lovely/helpful/insightful comments you have made over the years.  There have been times when this blog has been my lifeline, the only place I could be truly honest about how I felt and what I was going through and the support I have had from you has been so gratefully received.  Blogging has definitely helped and I shall miss it.

I shall continue to read and comment on those UC blogs I already read and I wish everyone the very best of luck with the management of their UC and/or their recovery from ‘The op’. I hope this blog continues to offer people an insight into the whole experience and is of some help.

Time for me to sign off and put this experience into the memory box.

All the best.  Get well/Stay well.

Lottie x


{July 20, 2009}   Memory 4

I went home with a bag full of Ibrupfen and paracetamol and was told that would be enough to keep the pain at bay – I was dubious at the time and rightly so.

N and the kids came to collect me and it was so nice to be getting out of that hot horrible little room on the ward.  We took a very slow walk to the car and then headed to McDonalds – I was starving 🙂  I got tired very quickly and went home to bed.  A few hours later I woke in such pain and Ibuprofen wasn’t helping. I rang my GP surgery and I had to go down to the out of hours surgery to look at other pain relief options.  I can’t remember now what they gave me but they gave me some sleeping tablets and some stronger pain relief.

The next day (Thursday – day 6) there was still no improvement so I went to my GP.  This time they gave me even stronger pain relief, dihydrocodeine (Vicadin) alongside paracetamol and the sleeping pills.  This worked well.

Suddenly on the Friday, Day 7 I started to get a pain in my rectum, like an itchy burning pain that got worse and worse and worse.  By Saturday morning it was excruciating and I was climbing the walls in pain again. N took me to the out of hours doctor where I spent an hour feeling like I was going to lose my mind to the pain, in the waiting room.  Eventually after a telecon with my consultant they gave me some local anaesthetic cream.  I remember we had to go to Tesco to get the script and the half an hour wait was horrendous.  I ran straight into the toilets to administer the cream and the relief was pretty quick – hurrah!

You’d think this would be the last of my pain story but no.  The rectal pain continued to the point where I just couldn’t cope and I was readmitted to hospital.  Within 24 hours things had gone from bad to worse.  I spent that night in agony in the hospital, crying and walking up and down the corridor – not one nurse tried to help me despite my obvious distress!  Eventually the doctor came round and tried to help but because (once again) I wasn’t written up for any morphine she couldn’t give me any stronger pain relief.  I had to wait until my consultant came round by which time it was like de ja vu.  I had spent hours in pain and they had to inject morphine.  Supposedly the nurses don’t like injecting morphine as it is so strong and injecting it sees immediate results, but they had to and I was soon living in a morphine haze for two days.  This time I didn’t hallucinate.  They wouldn’t let me have a pump for this reason so had to keep injecting.  I then spent 24 hours constantly throwing up and in lots of pain.  Fortunately the ward sister that had taken care of me when I had my vaginal problems with the catheter, was on duty all week and she took fabulous care of me.  She remembered me from the week before (it turns out they ALL remembered me, I had become renowned :-)) .  Once again they had no idea what caused the pain – I am a mystery.

I  spent a week in hospital.  I could tell you so much more about my experience in hospital, the people I met and the things I saw.  Most of it unpleasant but all of it life affirming.  I learnt a lot in that week.

Thus ends my experience of severe pain and hospitalisation.  I hope to never have to stay in hospital again and now, thanks to the op I certainly won’t have to for anything related to Ulcerative Colitis 😀

{July 20, 2009}   Memory 3

I remember waking up and being conscious of sound but it was as though I was drowning and I just couldn’t get up for air.  I was stuck in my sleep and so, so terrified.  I could hear my heart beating like a drum beating in my ear and just felt silence and total loss.  I eventually came round and started to scream, scream and scream for my Mum.  The nurses came in and tried to calm me down and to tell me that my Mum had nipped home for a while but they would call her.  It was really strange as although I felt disorientated and blurry I still heard and acknowledged that they had said to each other that they would see if I would calm down and then call her. I was frantic as I needed my Mum or N immediately.

I saw my mobile phone on my bed side table but it was all wobbly like it wasn’t really there. It took me what seemed like ages to get it and then I dialed the first number on my dial out which was fortunately my Mum.  She had just arrived back home which was 40 minutes away and I was screaming down the phone to her in such a state telling her get here and to get N and I was just repeating that I was scared, really, really scared.  It must have been awful for her.

Fortunately for her she had been through a similar experience with my sister just weeks before. You may have already guessed that I had reacted to the morphine and was hallucinating.  She knew this but was still very worried about me.  She turned her car around and drove straight back to me calling N on the way.  The rest of that night is very blurry as you can imagine.  I remember it all but as though it was all in a fog, it was very weird and not an experience I would like to repeat.  Needless to say they reduced my morphine and eventually removed my pump later that day.

That morning, at about 8am when I had just gotten back to sleep (baring in mind I had had about 2 hours of broken sleep in total since the night before my operation – this is day two), a nurse came  in and told me to get up.  She said that I had been in bed long enough and on day two I should be up and about, moving and starting to empty my own bag.  I just looked at her and said ‘go away’, she started to speak and I said ‘no, go away I am not talking to you about this’.  By this point I had lost all patience with them all and my natural desire to be polite had long gone.  She went away and I sobbed and much to my amazement so did my Mum.  My Mum NEVER cries.  She is so strong during a crisis but she could not believe that after everything we had been through in the previous 48 hours that a nurse could come in and a) be so uncompassionate and b) be so unaware of what I had been through – it turns out that the nurse had not had a proper handover so really didn’t have any idea, just assumed I was two days post op.  In those 48 hours my Mum had believed for a brief moment that they were going to lose me, that was a not a moment she could get over easily.

My Consultant came in to find me and my Mum wrecked and asked what had happened.  We explained everything and he called the sister into the room and as many nurses as he could find.  He balled them out in front of us. He basically told them that I was THE poorliest patient on their ward, that he knows that they are busy but that I was in far more need than any of the 30 other patients in their care.  They were told to take care of me and when I rang my bell they were to deal with me immediately.  From that moment on I had the ward sister taking care of me – for this shift a lady who happened to have been through the same op a few years before.  It was her first shift with me on the ward and she took good care of me.

Things improved from then on and I started to feel better, until that night when my catheter became incredibly uncomfortable.  The latest shift Nurse Sister looked and said that my vagina and surrounding area were horrendously swollen and saw that my post natal tear scars were swollen and probably causing the pain.  She smeared some local anaesthetic gel around the area and gave me some pethidine.  For once I was truly looked after and this second ward sister really took good care of me all night.  She just kept saying ‘you poor thing, you have been through so much’ and to be honest those words were worth more than any of her actions.  By that point I really just needed someone to acknowledge that I had been to hell and back in 48 hours.

The next day, much to everyone’s surprise I was up and about and changing my own bag.  I had to as they hadn’t changed my bag fro 24 hours as the nurses kept telling me they hadn’t any bags!  When my stoma nurse came in she also called in the nurses and went mad at them as she had personally trained every one of them to change ostomy bags and they had an entire cupboard full! Regardless, I started doing it myself as soon as I could move and never had a problem. It was no worse than changing a newborn baby’s nappy and I had had plenty of experience with that!

I did have one nightmare when my bag leaked and I hadn’t another one cut.  Poor N was swiftly introduced to my stoma in all it’s glory and did an excellent job of not throwing up at the sight 🙂 My husband is really awesome and my story and blog has never done him justice – I own him too much and have not the time to write it all down.  He rocked at this moment – a moment that I have heard many partners have failed on.

Anyway, I improved and started eating and much to everyone’s surprise my consultant decided I could go home the next day……..

The next day was slightly less eventful but at about 5pm again I started to have the horrendous pains.  This time they immediately gave me pethidine which was enough and it settled down again.

{July 20, 2009}   Memory 2

Blimey, I have just come on here to write my next Memory Blog and thought I was on Memory 3, turns out this is actually Memory 2.  I think I have written it so many times in my head I thought I had actually done it already but no, and now is the time.

So, the pain.  Yes the pain.  Not an experience I shall forget in a hurry.  I had had a pretty good first day in terms of comfort but at about 5.15pm on day 1 I suddenly started to get the most horrendous contraction type pains in my stomach.  They went from 1-10 on the pain scale in about 10 minutes.  It was a kind of pain I have never experienced before and now live in terror of ever having to experience again.  I never thought I was going to die as I had too much faith in my life to believe that but I definitely questioned how on earth someone could survive such levels of pain.  I have discovered that the human body and mind is truly amazing and can tolerate the most indescribable levels of pain and survive.

Thus the screaming and demands for pain relief started and continued for THREE HOURS!  For three hours I writhed in true agony whilst they tried with no success to locate my consultant anaesthetist. It had to be him as I was a private patient and on call consultants aren’t allowed to do anything to private patients with out their ‘paid’ consultants’ say so.  My Consultant Anaesthetist had buggered off for the weekend (supposedly to deal with a family problem which he neglected to tell anyone else about).  My Surgeon turned up and said that he had no idea what was causing the pain as the surgery had gone to plan and there was no infection or problem with the wound.  He tried to tell me to calm down – hmmm, you can guess that didn’t go down well.  My surgeon couldn’t write up for pain relief until they had spoken to the Consultant Anaesthetist – honestly, sometimes NHS bureaucracy does not have the patient’s best interests at heart.

They eventually located my anaesthetist who directed the on call anaesthetist to have a look at me and report back.  The on call anaesthetist came in and asked me about the pain.  My response included a number of expletives and the most assertive directive to ‘just stop the pain’.  My husband tried to explain the situation and that I had been writhing around in pain for hours.  The anaesthetist responded with abrupt rudeness which absolutely infuriated me at which point I told him ‘don’t you dare be so f***ing rude to my husband.  He has sat there watching me in agony for hours now, wondering if I am going to die and you DARE to speak to him like that?!  Just get me some F***ing pain relief!’.  He went out sheepish to say the least.  The next thing I hear is him on the phone talking to the Consultant Anaesthetist explaining my situation.  He then came in and explained that I was to be put onto a morphine pump.  I felt a millisecond of relief until he told me that it would take about half an hour to locate one, write the morphine script, get the morphine from pharmacy and set the pump up.  At which point, yep, you guessed it, my fowl mouth revved up again and I told him in no uncertain terms that I could not possibly wait that long (NB I only EVER use fowl language when in extreme duress, it has to be VERY bad for me to speak to anyone like that). The pain I was in was FAR worse than natural childbirth, which I have done twice with no pain relief.  He went off and made another phone call and then came in to administer 5mls morphine directly. It took 15mls of morphine to finally take the pain away and see me calm before the morphine pump was in place.  Oh the relief – I will never, ever forget the feeling of having that agony taken away – at this point I loved morphine.

My Surgeon came back once I was calm and said again that he had no idea what had happened but that he wasn’t concerned as things really had gone well and I was going to be fine.  It was probably (and has since been confirmed) a result of reduced pain relief due to the previous nights low blood pressure problem.  I was told to sleep.

After many presses of the morphine pump I eventually fell asleep.

Next thing I know there are alarms going and a nurse is frantically trying to wake me up. I was groggy and in a deep slumber.  Once I came round fully conscious it turns out I had only been asleep for about 30 minutes during which time the nurses had changed shift.  A nurse had come in seen me looking pretty awful and in a deep sleep and thought I was unconscious and dieing!  My Mum and N who had been sat watching me tried to explain to her that they had been told that I must be left to sleep and that I was fine as my pulse monitor was on to which the nurse had replied ‘Get out of the way I have to wake her up she is dieing’ – you can imagine how this made my Mum and N feel.  Panic over, I was fine, I had merely been asleep. Horrendous nursing.

Now I was awake and distressed and I needed more morphine so I spent an hour pressing the pump and at midnight told my Mum she could go home as I was finally going to go to sleep.

Half and hour later I woke up in the most frightening of states…

et cetera