Jiving on Regardless – My Ulcerative Colitis and JPouch Surgery

{April 21, 2010}   Pain Relief

Following a comment I had on my last post about having the coil I decided to speak to the Pharmacist about pain relief. Since having the damn thing put it in I have had constant bleeding and constant period like pains – most annoying! Given my obvious medical history i’m more than fully aware that you have to give things a chance so I am sticking with it but not for much longer if this continues.

Anyway, JM (my kindly gentleman commenter) reminded me that Ibuprofen is really not good for intestinal health. I of course know this as I had to live without it the entire time I had UC.  However, since having my JPouch I have become rather partial to popping the odd Ibuprofen when pains hit as A) I can and B) they work soooooo quickly and are soooooooo good. Gone are my days of living on the pathetic pain relief properties of paracetamol.

However, they really are not good for one with intestines such as ours so I figured I ought to get the low down on pain relief properly.  You’d think after ten years of UC I had investigated this more thoroughly before but no, I hadn’t or if I ever have I can’t remember.

So, I toddled into Lloyds Pharmacy and asked for a private consultation with the Pharmacist.  This made me giggle as there were a few people waiting in the pharmacy and you just know that they will have been wondering why I was going into that ‘private’ room. I always do when I see people go in there. I imagine conversations about genital warts and swollen testicles but then i’m silly and childish like that and many years in waiting rooms is a great enabler to an immature imagination.

So, I giggled and had my ‘private’ consultation.  Which really was much more dull than I imagine the imaginations of the people in the waiting room were making it.

It turns out that the only options of unprescribed pain relief are Ibuprofen based, Paracetamol based or Codeine based.  Ibuprofen is not so good for the gut but the best pain killer.  Paracetamol is, well, paracetamol.  Codeine based pain relief such as Co-codamol should not be taken for any longer than three days unless prescribed as it is found to be addictive after three days and a patient can then suffer withdrawal.  I avoid codeine like the plague as I have been there and done that and it really isn’t terribly pleasant (a consequence of 10 weeks of painkillers after surgery).

So, my private consultation with the pharmacist didn’t actually reveal anything I didn’t already know.  I now know that I should try paracetamol first and then hit the Ibuprofen if the pain continues.

I have a headache………..


{April 8, 2010}   A Monthly Nuisance

This is one for the ladies – it’s about periods so stop reading now if you’re male and can’t handle it 🙂

Since having my J Pouch surgery the only time my pouch is a bit temperamental is when I have my period.  I am fortunate that I don’t have heavy periods and I only have them for two or three days but for 24 hours I have to take Ibuprofen constantly as it is so painful.  During this time my J Pouch is irritable and causes me to have a very bad day and night which affects the rest of the week with tiredness. I also have a lot of back passage bleeding during this time, which is disconcerting and too much of a blast from the past not to mention quite draining.

I have had various discussions with my consultant and GP about this and they conclude that it is due to a lot of blood going to that area of my body during my period and because the J pouch and Uterus are so close together it has the double whammy impact of causing inflammation and bleeding in my pouch.

After much consideration I have decided to have a coil fitted to see if it can relieve these symptoms.  Don’t get me wrong, these symptoms are nothing but a minor niggle in comparison to Ulcerative Colitis but if there is something that can be done to stop them then I am all willing.  I have a very low tolerance for pain nowadays.

So, today I am off to have the Mirenca Coil fitted which isn’t an altogether pleasant thing to have done but shall hopefully do the trick.  It is highly likely it will stop my periods altogether which will be a huge bonus! I hope that in doing that it will stop my pouch from getting irritated and help that too – time will tell.

{March 31, 2010}   Radar Key

Hi All,

I have a Radar Key.  If you are in need of one, or a spare one, then let me know and i’ll happily post it to you for no charge.  Obviously I shall assume that you have a colitis related need for it.

Lottie -x-

{March 22, 2010}   Step up and Be Counted

There are more people living with the debilitating effects of IBD than there are MS and Parkinson’s yet due to the taboo nature of our condition  people there is very little public awareness of how our conditions affect us.  It is not helped by the fact that the NHS do not keep consistent records of IBD sufferers.

NACC have launched a brilliant Campaign called Step up and be Counted.  Here all IBD sufferers can register their support for this Campaign and help NACC get a national register of IBD supporters.

If you haven’t already then click this link and register your support.

{March 22, 2010}   Back again!

I’ve decided to come back to Jiving on Regardless in order to talk about my involvement with NACC and everything I am up to in the IBD/J Pouch world. I intend to be busy with this blog over the next few months as I sort it out and take it to another level in order to help more of you going through what I have been through. Bare with me whilst it takes shape.

In the meantime I am now taking on a bit more for and on behalf of IBD sufferers.  Here is a copy of my latest post on my ‘i’m well’ blog Lottie Loves which details my latest campaign relevant to IBD sufferers:

I have had such a busy weekend but all useful and exciting.

Saturday I spent at an NACC ‘Inside Out Day’ which is basically a training course for  volunteers.  It was really interesting and definitely useful and further engaged my enthusiasm for this amazing charity.  I came back all revved up and ready to do, do, do – as you do!  I have actually been ‘doing today’.  I have resigned myself to the fact that I shall forever be locally associated with poo and have now put myself forward to organise a campaign to save our local public loos (after the success of my Dog Poo campaign I feel i’m perfectly placed 🙂 ).

It is incredible but to save money our District Council has now relinquished its long held responsibility for public toilets in the area and is now going to close them unless the Town Councils take on the responsibility and cost.  This is of course a significant thing for the Town Councils to take on when they have not had to incorporate such a cost into their budgets before.  Needless to say many public toilets are now going to be closed in our local area.

This is hell for people like me and other IBD sufferers/J Pouch/Stomates.  There have often been times when I would have never set foot outside for fear of not being close enough to a loo.  Having no loos in town will mean for many that they can no longer go into town.  This is just awful when the illness already takes so much away from us.  I have just written to the Chair of our Group to see if we can help Campaign for the toilets to be retained. Poo Campaign No 2 – OH MY GOODNESS!

Aside from my seriously worrying association with all things poo I spent Sunday doing something wholly more pleasant.  Lindy Hop.  I spent four hours being worked hard by my Lindy Hop teachers in a Workshop. It was excellent and I learnt loads.  However, four hours of Lindy Hop takes exhaustion to a new level.  The Magician and I rather pathetically sat discussing our achey legs and need for Ibuprofen last night after he had ran 17 miles and I had done my class.  No one can call us couch potatoes!

This week I am going to be a busy be:

  • Sorting out my toilet campaign
  • Organising for the school to have a fundraising day for NACC – International IBD Day 19th May
  • Sorting out bits for the school cookery room
  • Starting to arrange my big Labour Party fundraiser now that Ed Balls has agreed to attend (yay!!)
  • Getting ready for a weekend of West Coast Swing dancing in Torquay from Friday to Sunday.  Just me and The Magician in a four star hotel with lots of dance friends and late, late nights – bliss 😀

All in all a busy week and one I ought to get on with.

Toodle loo

Lottie -x-

{January 3, 2010}   Lottie Loves…


Not sure if anyone will be interested but I have now started a new blog called ‘Lottie Loves…’ This blog is more about me and my life without UC but obviously, given that it was a huge part of my life,  I still have a J-Pouch to live with and I am still fundraising and working with the NACC,  it will still be a part of my blogging, just as a minor part of my life rather than a major one.

I think my new blog will definitely appeal to women rather than men – but heh, you guys might enjoy an insight into us women and our lives 😉

It is good to be back – I have soooooo missed blogging.

Hope some of you follow – regardless I still follow your UC/J Pouch blogs and enjoy them all.

Lottie xxx

{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