Jiving on Regardless

{May 21, 2009}   Looks can be deceiving

Here is a piece I wrote for my local NACC Group Newsletter – thought it might ring some bells.  Ali inspired me to write it as any of her readers know she is often confronted by issues on the tube to work – cheers Ali x

Throughout the ten years I have suffered with Ulcerative Colitis I have often been confronted by minor prejudice and ignorance. Most of this stems from the fact I have never really looked ill. In appearance I am a young woman with two healthy children and I have no external signs of illness. I have no damaged limbs, I have all of my hair, I don’t walk with a limp or use a wheelchair. My illness is, to all intents and purposes, invisible.

In my experience our society appears to largely understand illness and disability through the way a person looks. I quickly came to realise this and over the years have made many concessions to this understanding. On occasion I have chosen not to put make up on as then I would look ‘too well’ and my ailments might not be taken seriously. I have chosen not to wear a certain outfit as then I would look too smart and again my ailments may possibly not be believed. If I turn up to work looking smart and well put together with no signs of illness how can I justify having had three weeks off because I couldn’t leave the bathroom? If I turn up to the school gates with make-up on and looking well groomed how can I justify the fact that this is the third week I have cancelled a coffee date with my circle of friends? I find that the better I look the less understanding people are of the true rigours of living with Ulcerative Colitis.

The problem with the assumptions people make about illness is that in order to conform to them I must stop myself from being the person I want to be. I can’t control my UC. Every single day is hard during a colitis flare, every day is riddled with pain and discomfort and the threat of embarrassing incontinence. The one thing I can have some influence over is the way I look. I want to look well and ‘normal’ but people’s assumptions prevent me from doing so as if I do I shall then be faced with questions and harsh judgement in the form of funny looks, tuts and snide comments related to the fact that I ‘don’t look ill’ so ‘is it really that bad?’.

There have been many memorable occasions when my using disabled toilets has been met by tuts and shakes of the head or my using a disabled parking space with my blue badge (used because of associate inflammatory arthritis) has been met by derogatory comments or worse, questions as to why I am using that space. I am not the only one to have sat on the tube or a bus and not given my seat up for the old man or pregnant lady only to be met with accusing attitudes, how could I, when I look so ‘normal’ need that seat? I am not ignorant or rude – far from it. On these occasions I have desperately needed to use that toilet or needed to park in that bay so that I can get to a place (usually a toilet!) quicker. I have needed that seat as standing up would result in me keeling over as I am exhausted from my UC and associated anaemia. I don’t use these facilities because I want to I use them because I have to. I may not look ill but unfortunately I am ill.

I have learnt that illness doesn’t necessarily have a ‘look’ about it. Often times people look well but can be in serious pain and need help. Often that person who looks healthy sitting on the tube is actually in serious need of the seat they are sat in. Sometimes that handsome young man who looks fit and healthy has actually just spent two hours on the toilet in agony. Sometimes that mother of two young children isn’t just shattered from the rigours of being a Mum but is exhausted from being a Mum and managing a chronic and debilitating illness.

Having now had J-Pouch surgery I am fortunate to no longer suffer from UC and to finally be fit and well. As time goes on I realise that UC has opened my eyes. If I ever was then I am now far less judgemental of people and their appearances. I now fully understand those expressions we so frequently here such as “Looks can be deceiving’ and ‘Never judge a book by it’s cover’. They are true and well worth remembering as we go about our daily lives with or without IBD.


{May 14, 2009}   Pants!

I have another UTI – so, so very annoying.  Last night I had to get up for the toilet every hour – I really thought those days were over, grrrr…..Still, went to the Dr’s to sort it out and am on another round of antibiotics.  The doc is sending another sample of my urine off to be analysed and feels confident they will get a conclusive result this time as I had blood, protein and glucose in my urine.  I have made an appointment to see her in a weeks time when we will look at long term solutions, probably a prophylactic dose of antibiotics to finally rid me of these probs.

Anyway, this got me thinking about my knickers 🙂 The last year has seen a remarkable change in my under garments which I can now show you in pictures (now I have finally sussed this photograph business!).  You will see there has been evolution in my underwear draw – yay!!!

Yesterday I had a really invigorating day.  After the NACC meeting I attended a couple of weeks ago one of the specialist IBD nurses from Addenbrookes asked if I would speak to a group of nurses on a training day there.  She just asked that I explain to them my history and tell them about the disease, how I lived with and what I felt nurses could do to make it hospital experiences for patients better.  I enthusiastically agreed, anything to develop anyones understanding of this illness is top of my agenda at the moment.

My audience were a group of 30 nurses from various wards/disciplines who were spending the day being introduced to all things gastro and in particular Crohns and Colitis.  Prior to me speaking they had spent the day hearing from specialist IBD nurses, consultants and dietitians on the medical and social/psychological effects of living with IBD.  The specialist nurse who invited me to speak is a lovely lady and assured me that these nurses would gain an awful lot from hearing about it from the patients point of view.

So, I stood in a tiny room crammed (and I mean literally crammed) with nurses and told them my life story with Ulcerative Colitis.  Their reception was warm and friendly and I could tell that they were intrigued and interested in what I had to say from the questions they asked and the comments they made.  I basically told them an outline of my story from diagnosis to present day and the difficulties of living with the disease.

One of the key things I explained was that in my opinion most IBD sufferers know quite a lot about their illness and tolerate high levels of pain and discomfort.  Therefore if they are admitted to hospital, no matter how young and healthy they may look in comparison to other patients, they were indeed in desperate need of help to get better and would certainly get out of the nurses hair as soon as possible.  With this in mind the only things that IBD patients want from nurses in hospital (and indeed probably most other patients too) is a smile, compassion and an understanding that the toilet is one place they will be spending a lot of their visit and therefore access and cleanliness of this area were paramount.  I am sure I missed some important points I could have made to them but many of them thanked me as I was leaving the building with a couple of them enthusiastically telling me what a difference I had made to their day and their understanding.  It felt good.

I really, really enjoyed speaking to them.  It reminded me that I have always enjoyed presenting and publicly speaking I just haven’t been in a position to do it for a long, long time.  It reminded me of how well I am now and it felt good to be talking about the albeit difficult circumstance I have lived with for the past ten years but that I was now in a position to use those experiences positively.  In hindsight, should I do it again, I shall prepare more and ensure I cover certain points, but overall it went well and I think they got what they needed from it.

One thing that came out of this was a conversation I subsequently had with the IBD nurse who told me that what I had to say about the pain of living with Ulcerative Colitis was very interesting.  It turns out that pain is not a textbook presentation of Ulcerative Colitis.  Indeed, for many years Ulcerative Colitis has been considered to be pain free unlike Crohns which does have a textbook presentation for pain. This is why there are no pain management protocols for the illness – unbelievable huh?! I was astounded.  She explained that it wasn’t until the NACC did a survey a few years ago that it became apparent that many colitis sufferers were in fact living with daily chronic pain. She is hoping that some research will happen shortly on this.  Hands up if you have pain free colitis 😀

So, an interesting day which has my little brain ticking.  I suspect colitis will continue to be a massive part of my life for some time to come albeit it in a much better way :o)

On admission I was taken to a private room on the ward and given an enema. They also sorted me out with the delightfully attractive pressure socks (to prevent blood clotting) and asked me to change into the equally attractive hospital gown – I was setting fashion alight in that little get up!

Next my stoma nurse came along and marked my stomach with a great big black mark to indicate to my surgeon where to place my ileostomy.  This caused some amusement because of my tattoo and doing at utmost to ensure that it was in a comfortable place which also didn’t destroy my tattoo 🙂 See my photographs page for more on that.  Everyone remarked how calm I was and I felt it.  I felt almost excited as I knew my life was about to change in the most incredible way and I was ready for it, really ready for it.

Please bare in mind that my tale is based on memory recall and my memory of this time has been largely shut down until now, I may certainly get specifics such as times wrong – but who really cares?

The anaesthetist came to see me and explained that I would have an epidural and sedation as this was deemed safer and more effective than general anaesthetic with better post op recovery.  I felt quite anxious about the epidural as various ladies I know had told me how painful they were to put in but as it happens it didn’t matter as I don’t remember them doing it.  I think they must have done it once I was sedated.

So, I was taken down for surgery at about 2pm. I just remember being wheeled down to theatre on my bed with N walking beside me looking very concerned.  He had to say goodbye in the corridor and at this point I had completely shut down all emotion.  I think when faced with situations such as these,  shutting down or disassociating is the only way forward.  They took me into this tiny pre-op room which felt very claustrophobic and I had lots of nurses surrounding my bed, they were a chatty bunch, reassuring me, gossiping and giggling, it felt very relaxed.  They immediately started putting lines in and connecting me up to various monitors.  I saw them injecting the anaesthetic into the cannula and just remember thinking ‘thank God, they’re putting me out’.

Roll on about 6 hours and I found myself waking up in recovery.  It was a large room and I just remember waking up as if from a very deep sleep feeling very dry of mouth, confused and uncomfortable.  I can’t recall what the nurse said to me but I remember telling her I was in pain and getting some sort of reassurance from her.  She told me that I had been quite poorly post op and had been in recovery for 3 hours.   They had had problems getting my blood pressure up.  She made sure that I understood that the op had gone well and to plan but I had had a blood transfusion.  All of this just kind of went in one ear and out of the other.  I then begged for water and she gave me a little at a time.  I’m not sure how long I was in there after that but the next thing I recall I was being wheeled back into my little private room to where my lovely husband was waiting for me.  I think my Mum was there too but I can’t remember for sure.

I felt cold, colder than I had ever felt in my life.  I couldn’t stop shivering.  It turns out that this is often the case after a blood transfusion.  They loaded me with four blankets despite it being the hottest day of that year so far and everyone else dripping with sweat – it felt very odd. I was tired.

At this point I was receiving pain relief via epidural and felt no concern about this.  The next 12 hours became a blur of no sleep and annoyance!

I fell asleep briefly but was having observations taken every 15 minutes.  I think at about midnight my blood pressure went too low again and the nurses all began to panic, panic being no word of exaggeration.  In hindsight I feel surprised at this as I would assume it is something they are used to dealing with but I suspect that this particular ward didn’t often deal with such major surgery post op care.  They initially turned my epidural off (well, they stopped the flow, they can’t actually turn the machine off without an anaesthetists permission so the damn thing beeped every five minutes and that alone nearly sent me off my marbles) as it is common for an epidural to reduce blood pressure.  I have naturally low blood pressure which ordinarily is a good thing but post operatively with an epidural on top is a bad thing.

I thought nothing of them switching off the epidural, I wasn’t in pain and they assured me that I had enough pumping around my system to keep me pain free for some time.  Thus we embarked on a night of what was really quite tortuous although not in a painful way.  After such surgery sleep is a must but I had NO sleep for many, many hours.  This was because for pretty much the entire night I had a nurse on each arm taking my blood pressure, first with the electric pumps and then by old fashioned method to continuously check my blood pressure.  It was farcical really. They kept switching the epidural off, moving me onto my side, then onto my back, then moving the bed up, down and around, it was like being on a flippin fair ride – I kid you not!  They would eventually get my blood pressure up, switch the epidural back on and then next obs would reveal my blood pressure had dropped again and the whole farce would continue like that all night. I think at about 4.30am a doctor came to see me and in a tired and abrupt (yep, rude!) way advised me that the nurses were not doing their job properly, they didn’t need to call her as it was just the epidural causing my pressure to be low, it was perfectly normal and perfectly okay and there was nothing to be so overly concerned about.  She promptly told them not to bother her again! She gave me a booster from my epidural and then there was peace – for a few hours.

That first morning I felt exhausted but was functioning on adrenaline, well, when I say functioning I mean keeping my eyes open! I just couldn’t sleep, couldn’t settle and besides I was constantly being disturbed by nurses.  My Mum came to see me as I had insisted that N take the kids out to a pre-arranged play thing that had been booked before my op was arranged.  I felt that this would ensure that the kids were not concerned about me.  It worked, they weren’t and they had a great time.  I spent the day dozing, chatting to my Mum and watching my stoma in that memorised way that all stomates do – it was awesome!  I also discovered that I had a catheter, a drain from the wound and a bandage on my neck from my central line and some other line they put into me, or maybe they moved the central line? I don’t know but I had two holes and now have two scars on my neck (tiny pinpricks now).

I remember at 4pm on day one post op I got a text from N telling me that he would be in shortly and that the boys wanted to speak to me (we had been keeping N up to date all day by phone).  I was just about to call them when I suddenly got hit by a wave of pain, then another, then another.  Pretty quickly I was in level 10 agony, life wrenching, indescribably, tortuous pain.  I was to spend the next three hours screaming the hospital down in mortifying pain – but that’s another post for another day…

I would like to tell my op story but in order to do that properly I need to first explain a little about our NHS and private healthcare.

Those who read my blog from outside the UK  may not fully understand our health system and I am not the person to best explain it all but I shall attempt to put it in a nutshell (for more se http://en.wikipedia.org/wiki/National_Health_Service ) We have an National Health Service (NHS) which means it is a health service provided by the Government derived from the taxation of individuals working in this country.  It is a health service with equal access to ALL (okay some would argue certain elements of that statement but the basic workings mean this).  It is not without it’s problems, majoritively in terms of facilities, cleanliness, waiting lists and access to consultants.  However we are fortunate to have it and many countries who do not have an NHS  envy our system.

Many people, myself included have Private Healthcare Insurance (PHI).  This can be bought as an individual or, as is more often the case it comes as part of an employees benefits package with their job. In our case my husbands company cover him and his family.

During my experience with IBD I have used my PHI but not as much as one might imagine.  The only real benefit to having PHI when you have IBD is that you can access a private hospital bed either in a private hospital or in a private room in an NHS hospital. Other than that I have never had to use it.  I have always been able to access my consultants and specialist nurses so quickly that there has been no advantage to seeing them privately plus, with our insurance, you can only see them for initial consultations and tests as you can’t see them privately for ongoing treatment.  Therefore  my PHI has only ever afforded me the luxury of a private hospital bed – but I am not knocking that!

In the past this meant being admitted to my local NHS hospital but as a private patient on their private ward.  This ward was amazing.  A standard private room but with nice furnishings, a TV, radio, telephone and a bell to a nurse who was literally at your beck and call – they would even bring cups of tea regularly and basically pander to your every five star whim.  It is incredibly different to being on an NHS ward where the food is abysmal, the staff have little to no time for you, you get a gross cup of tea which tastes like dirty water every few hours and you also have to suffer the humiliation and indignity of sharing a room (ward) with seven other people and their filthy habits! You can imagine that given the choice it was five star private treatment all the way!! I am a Social Democrat – but to a point!

So, I have on numerous occasions almost enjoyed my jaunts in hospital.  Once they have made me comfortable it has always been quite a pleasant experience and dare I say it, relaxing.

Clearly, when told I would need the op I promptly opted for the private option.  This partly due to the fact that by going privately I could have more control over the date of the op although not by much, the NHS would have operated on me just as quickly and in hindsight not on a Friday afternoon (note to self – NEVER have major surgery on a Friday afternoon in an NHS hospital).However, at the time I didn’t appreciate this difference and opted for the private option.

Unfortunately I could not have my op in a private hospital as they don’t have critical care facilities and for such a major operation my surgeon felt it important to have access to such facilities despite the fact he had no intention of having me use them – thank God! Another unfortunate was the fact that due to cost cutting the local hospital had closed down their private ward and were now putting patients in private rooms on NHS wards.  At the time I didn’t see this to be a problem  – I now know differently.

So, on Friday July 25th 2008 at 11am I was admitted to an NHS hospital as a Private Patient for a total colectomy, ileo-anal astomis (J-Pouch) and temporary ileostomy – thus the story begins…

Wow, I ought to put more photographs on here – my hits doubled from my best day just because of the photos – why is that then?  I don’t understand how suddenly x number of people can discover my blog because I put my photographs on.  Perhaps you guys looked at them more than once?  Who knows, good job I don’t write this to get hits, it must be a nightmare fathoming these things for people who do want the hits for advertising etc – a minefield!

I’ve had a good week. I am feeling so much better mentally.  It helped a lot putting the photographs up.  I am sure they don’t look too big a deal to an ordinary viewer but for me, looking at them brought up a whole heap of memories that until now I haven’t really been in a position to deal with.  It was really cathartic to post them, I have been meaning to for a long time but never been able to bring myself to do it.  Now I just have to get round to writing my story.  I will, I just need to be in the right frame of mind.  Gosh, anyone reading this will think i have something interesting to write – if that’s you you will be terribly disappointed, it isn’t that interesting just a little traumatic for me to remember in order t write it down.

It also felt good to see my Gastro Specialist Nurse last week.  I have often sang her praises on here and will no doubt do so again.  I no longer see her as a patient obviously but I shall now see her as part of my involvement with the NACC and I am glad.  She is an inspirational lady, far more so than she would ever allow herself credit for.  I gave her some money I have raised to go into her trust fund.  She basically, of her own volition, set up a trust fund for the GI nurses.  The NHS Trust over see it to check that it is spent appropriately but she uses it to pay for training and equipment that the NHS won’t provide.  I think that is amazing.  It just goes to show that her job is far more than just a job to her and explains why she is so damned good at it!  People like this really get my admiration, the ones who go about their business but make such a huge difference to peoples lives.  They are never officially/publicly recognised of course because they do it so selflessly but they do it anyway.   The world is a better place for them.

Photographs and raising money have helped in the last week but it has also helped for me to look at finding a focus for myself and an outlet for this new found energy and health. I have made two decisions and both together completely underline the contradictions in my personality *little devil*.  I am currently deciding which burlesque course I am going to undertake and aim to book that for June/July time.  I am sooooo excited you can not believe.  I have mentioned before that I love all that stuff (I have no intention to strip just the showgirl stuff and the clothes, oooooooh the clothes!).  I have wanted to do it for a couple of years but for obvious reasons have not been in the position to go for it, I am now so that is my next personal challenge – I can’t wait.

I have also decided that I am definitely going to finish the degree I started seven years ago! I have done a year towards an OU degree and have now decided that i really can afford the time and energy to complete it.  As of September my youngest son shall be at playgroup 15 hours a week which is plenty of time to do a 60 point course.  I shall be doing a politics degree – yup, politics and burlesque, not a likely combination but who says there is anything wrong with being intelligent and sexy???!!! Love it!

So, there is me going out and getting my life back.  I lost my twenties and I am so determined to make the most of my thirties 🙂

Just need to think of a burlesque name now – any thoughts welcome :-))

{May 4, 2009}   Photographs 2

I have now added all of my photographs pre surgery, post surgery up to present day scars and all!


{May 3, 2009}   Photographs

I have uploaded some photographs from my surgery. I have more but need to get them from my phone, which I still haven’t worked out! If you go to the PAGES section the right of this page you will see a page titled ‘photographs’. They come up very close to the action so don’t look if you are squemish or pre surgery and aprehensive.

et cetera