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.


{June 24, 2008}   A word in edgeways

Getting a word in edgeways is not something we Husbands tend to worry about too much. However I have been asked to contribute my thoughts in order to give an idea what it is like to be controlled by UC but not actually be ill with it. Whilst I know that the pain and discomfort that my wife has endured for the last 10 years is real and truly debilitating and the road she is on right now through the operations must be terrifying, it is also a fact that myself and the rest of our family, by association, are affected by this illness. Each time it flares up we as a family unit find ourselves limited in what we can do and achieve together. The highs and lows of this illness also make it hard to find the kind of stability we need to move forwards together. It also changes the nature of relationships as one person is cared for and the other becomes carer.

There are lots of aspects I don’t like about living with this disease, but by far the worst is the knowledge that I can do nothing about it. Watching someone you love suffer is nigh on intolerable and (often subconsciously) emotionally draining. Wanting to do something to help them and learning that nothing you can do will make a difference is very, very hard. For years, we have been through the cycles of illness and drug induced semi-recovery. Each time there is a relapse, I personally go through all the things that I can do to make her ill periods better – do more chores, let her sleep, avoid giving her any undue anxiety or distress and so on. Over time we have learnt that, as thoughtful as these things are, they do not contribute to any kind of recovery. Sometimes these actions can contribute to delaying getting life back to normal – I sometimes find it hard to view my wife as the strong, independent person that she really is when she has just spent weeks in hospital attached to a drip and months exhausted and in pain.

I know we are heading back in to this territory again now that we have surgery firmly on the cards. I also know that with all our experiences of the last 10 years we are better positioned to cope with the transitions than we have ever been. Uniquely, there is light at the end of the tunnel; a destination rather than just a temporary and unfulfilling respite. This permanency should make the move back to the normality of family life a much smoother process.

I guess in a few months time I will no longer be able to get a word in edgeways, so I should add my 2 pence worth whilst I can!

{June 6, 2008}   Signed over to Surgeon

I haven’t been feeling too good this week so haven’t had the inclination to write.  I have constant, really painful, lower back ache again now.  It is due to the tension from dealing with pain all day but it is now worse than the pain which is causing it.  It has gradually felt a little better since taking Co-codomal constantly and trying to take things a bit easier, it is still not great though.

I have felt really annoyed this week as I can tell that everything is getting that much harder again.  Daily routine stuff I was able to do with no problems, in terms of energy and pain, two months ago, are now very difficult.  I haven’t been dancing for two weeks as I have been feeling so rough which is a definite indicator that I am not coping with my energy levels very well.

On Wednesday N worked from home and we both went to the hospital together to see the Stoma Nurse and my Consultant.  It was a strange and somewhat depressing day.  As expected, my Consultant signed me off into the care of the surgeon and referred me for the surgery.  I hadn’t really thought about the fact that this meant I was no longer under the care of the professionals I had come to know so well and trust.  They all said good bye to me and it felt a bit sad.  These people have helped me so much over the last five years and have supported me so fantastically that I feel a bit lost knowing I won’t be under their care anymore.  I guess change is always daunting.  I can still contact them if I need to of course and they have asked me to keep in touch, assuring me that they will be keeping up to date on my progress but it still felt odd.

We saw the Stoma Nurse too which was just an opportunity for N to hear what is going to happen and ask any questions.  I think he felt it was all a bit overwhelming but I know he also found it helpful and reassuring.  M, the Stoma Nurse, was great and answered everything, reassuring us that she was there to support us all along the process – one that is going to be very long!  I now just need to experiment with the bag (something I still haven’t been able to work up to doing) and have a look at the different products available. The one thing that has crossed my mind is that I won’t be able to sleep on my stomach whilst I have a bag – nightmare.  I hated being pregnant for that reason as it is very hard to train yourself to sleep differently.  Still, it won’t be forever.

I now have an appointment to see the surgeon in two weeks time.  I have a busy two weeks ahead with Birthday celebrations and lots more so the time will fly.

Talking of birthdays the celebrations start tonight.  Tonight we are off to a WCS freestyle to celebrate a friends birthday.  Sunday is N’s birthday and we decided to have a day out with the kids so we are taking them to a Dr Who exhibition.  This is not necessarily my thing but N and the kids absolutely love Dr Who – yep, that’s a five and a two year old I am talking about! They are so excited, I just hope we don’t give them nightmares.  On Tuesday N and I are off to London to celebrate my birthday, just the two of us mooching about doing whatever we want – I can’t wait.  The next two weeks continue along that vein with various celebrations and parties for ours and friends birthdays – it’s a mad one, but it is great timing to keep my mind of things.  It is a bit frustrating that I can’t do all of these things with the gusto and energy I would like but we can’t have it all.

I am sure I have more I should be writing down but I haven’t the energy to sit here any longer so I am now going to try and chill out for a bit to save my energy for tonight – I can’t wait 🙂

Last night my UC decided to give me a potent reminder of how bad it can get but it didn’t start off that way.

Yesterday I woke up feeling exhausted.  I had that feeling when your body feels as though it has no substance despite a good nights sleep.  I tell people it feels like I have been unplugged, that is the only way I can describe it.  Despite this feeling I carried on, as you do, and had a fairly busy morning.  We were planning on spending the day with my Mum who lives about 40 minutes away but she was ill so we nipped up to collect some things from my brothers and were home at 2.30pm.

I had already arranged to ring E, the lady my Stoma Nurse recommended I speak to.  As I was home I texted her to see if she could meet for coffee instead and she could.  I proceded to spend two hours with her.

What a lovely, lovely, lady.  She spent two hours going through everything in incredible detail with great thought and compassion. It was far more helpful to speak to her than I could have imagined.  She had UC for two years and then got very ill and ended up having an emergency operation – at the age of 20! As you can imagine this was horrendously daunting and scary.  A lot of what she described as being difficult and awful I hope I won’t have to deal with purely because I have had time to prepare and talk to people.  She has definitely prepared me for some details I hopefully won’t find as shocking now.  She had an horrendous time with post operative infections and ended up spending three months in hospital.  This is just one of those things you can’t predict and yet is quite common, I just have to hope it doesn’t happen to me.

Despite the difficulties she encountered with the first operation she eventually went ahead and had the J Pouch surgery with no complications and is now very happily ‘normal’ and a huge advocate of the operations.

I came away feeling a little overwhelmed and scared but also relieved to have been able to find out the ‘details’ beforehand and extremely pleased to have found someone I predict will become a very valuable source of help and support.

That evening I was feeling totally exhausted but relayed the conversation to my husband and my thoughts and feelings on the subject.  He was fantastic and reassuring.  My main worry was that I don’t feel ill enough right this minute to warrant such a huge, life changing ordeal – correction, I DIDN’T feel ill enough! My husband proceded to point out how ill I actually was and to once again remind me of my lack of perspective on these things. I then had to suddenly rush to the toilet and spent 45 minutes in complete agony.  It was so bad that I seriously considered getting myself to A&E as I know that once it turns this corner there is no going back.

After a while I managed to ply myself from the toilet and fall asleep and I actually slept through the night. After thinking about there was no way I was taking myself to hospital on a bank holiday weekend.  I have been down that path before and it is just a nightmare as the consultants don’t come in until the next working day.  I shall just tolerate this until I can speak to my nurses on Tuesday.

This morning I woke up and the process started again and I have had a very rough morning running to and from the toilet and in much more pain.  I guess it kind of thought it ought to remind me that it really is here – bastard!

I am taking a sick day today, which means, for the first time in a long time, I am yet to get dressed (at midday), I am spending the day in bed and my husband has taken the kids out to give me some peace.  I am really hoping that resting will allow it to settle down. I really wanted to keep going for a few more weeks until N and I had been able to see the Stoma Nurse, the Consultant and the Surgeon together and had also been able to plan with our parents our childcare and so forth. I am now just praying that this blip isn’t a big blip and doesn’t see me taken in as an emergency – I have a feeling it might.

I wouldn’t be taken in as an emergency in terms of ‘your bowel is going to perforate, you need to be operated on now or die’ which obviously can happen to some.  It will just be because there is nothing they can give me to settle it and thus settle the pain.  It will be a case of being in agony until the bowel is removed.  In some ways, whether this is a minor blip or not it has served to remind me just how painful UC is and how I can never face a severe flare up again.  It is definitely time for me to have the op.

So, on Tuesday, I shall call the Stoma Nurse and my Gastro Nurse and start the ball rolling.  It is possible that just by speaking to my Gastro Nurse, she can speak to my consultant and get the referral ball rolling to the surgeon. Either that or she will tell me to come in and they will admit me.  My consultant has always said that if I came in out of the blue I could have the operation within 48 hours – they don’t mess around with UC which is one Godsend.

Fingers crossed I will be granted a temporary reprieve from my poorly intestine.

As time goes on I shall relay all of the helpful hints and tips E gave me yesterday but to relay a two hour conversation will take far too long.  Needless to say, I am sure I shall be repeating many of them.

The damn toilet is calling me so time to go 😦

{May 23, 2008}   Endless thinking

Today has been tiring and quite the chore.  N had the day off and my son had an additional days holiday from school for teacher training.  Here we were planning a lovely family day but our eldest had other ideas.  He decides that today is the day to kick off and behave like a brat and in the process has made the day quite fraught – I love being a parent sometimes!

This morning didn’t start well at all as my colitis was painful and I had a protracted bout of it which meant our day was set back by a few hours.  N and I have been chatting a lot about the ops etc and we concluded that I have no perspective on pain, discomfort and what I ‘should’ feel like.  My pain threshold is now so high that what I class as a 3 N thinks someone else, without chronic illness, would class as an 8/9.  I admit that I persevere despite symptoms as all chronicly ill patients do and I am struggling with how much benefit I would get from having the ops as I can’t imagine how much better and different I would feel as a result of them.  It’s been ten years since I felt ‘normal’.  I also realised that this is the first time in ten years I have been experiencing UC with no medication.

I digress slightly but does anyone else find that their bladder is more sensitive when their UC is in flare up?  Not only am I on the loo constantly for obvious reasons I am now always emptying my bladder – I am so fed up of the decor in my bathroom.

Tomorrow I hope to have a conversation with the lady my stoma nurse recommended I speak to.  The last few days have been full of minor realisations of the impact this process will have on me.  Yesterday I finally read the literature the nurse gave me.  I haven’t read it before as I guess I wasn’t ready for the detail but I finally did it and it made for depressing reading.  For 8-10 weeks I won’t be able to lift anything heavier than a kettle! 8-10 weeks!  This means I won’t be having big cuddles from my little men or bathing my youngest.  I won’t be driving for six weeks, although  am guessing that this is fairly irrelevant as I won’t feel up to driving anywhere anyway.  Supposedly, even the third op, the MINOR op requires a 7-10 day hospital stay! On top of this the risks of complications and set backs seems enormous and all too common.  I am most definitely not in for an easy ride – and that’s annoying!

Despite all of this I know I shall be going ahead with it. My husband is really keen for me to have it done and I guess that says a lot about how much he feels this disease impacts on mine and his/the kids lives.  He can’t stand seeing me in pain (he found childbirth a hugely stressful and traumatic time) and I know he would not encourage me to go through this if he didn’t feel it offered huge benefits.  It still seems mad that to have a normal life I have to go through two years of operations, procedures and enormous change.

I have a feeling that this blog will become an endless repetition of my waffle for the next few weeks, so anyone reading it feel free to tune out for a while 🙂

I am now going to spend the evening with my lovely husband, watching Heroes and eating curry (before you ask, curry makes no difference to my UC) – my definition of happiness 🙂

{May 15, 2008}  

N and I had a long chat last night about ‘the op’ and the logistics of having it done.  We decided that it is time for me to take back some control and have the operation.  We know it will be hard and the next two years will be fraught with ups and downs but at least there should be a positive end to it, unlike now when it is fraught with ups and downs and no foreseeable end (bar the op).

We figure that September will be the best time to have it done given that we have a summer holiday booked in August which we are looking forward to and it will be better done when my sons have school/preschool. So, I have made an appointment with my sons Headmaster to tell him what will be going on and to talk about how we are going manage it.  I am also going to be speaking with our parents this weekend to see how they can help.  Our plan is to keep B in school as much as possible but it is probable that he will have to take the odd day off to be taken care of by relatives who are far away.  We are hoping that with our Childminder and my In-Laws, who are retired, and lots of friends rallying round taking B to school and back, we will manage during my hospital stay and recovery time.  It is not going to be easy that is for sure.

Next I am going to make an appointment for my husband and I to see the Stoma nurse so that we can both ask questions.  In addition, as soon as I have the details, I shall be in touch with the patients that my nurse recommends me to speak to and hopefully have good chats with them.

I think that come the 2nd July, my next booked Consultant appointment,  I will have spoken to everyone and done the research I want to do and be ready  to get him to refer me to the surgeon.  After that I think it will all go ahead as and when I want it to as fortunately we are able to have the op done privately.  Once again, I am so, so grateful that my husband has a job with Healthcare.

I feel a bit wobbly and all over the place with tiredness and worry but I also feel quite excited and positive that finally I might get my life back as I have wanted it to be the last ten years. I know it is a long process with a lot to get through but I figure that I have managed the last ten years of almost constant flare ups so getting through the next two will be fine.

It’s been a busy week but I have a great weekend of West Coast coming up to take my mind off it, so as of tonight, I am going to have a few days break from thinking about my bowels!

Better go and get my son from nursery…….

{May 14, 2008}   Surgery Looming

Once again it has been a long time since I last wrote on here.  I kind have haven’t had the inclination to write stuff down, it’s been a lot easier to just get on with things and try not to think about them too much, but I figure I ought to update and keep going if only to show how all of this really works.

Things have moved along a bit in some ways but in others I feel stuck in the same place.  My colitis is in flare up again, although currently quite mildly and manageable.  A few weeks ago I saw a colorectal surgeon about my piles (an unfortunate side effect of UC).  He examined my rectum and said that the colitis was bad again and he recommends surgery on the basis that I have now had the disease for 10 years and after ten years the morphology of it changes (it can become cancerous) and the fact I am not responding to any medications suggests that the only option is to remove the bowel, therefore removing the disease.  Needless to say this was not a shock but still threw me.  He dealt with the piles by injecting them with some stuff which makes them shrink (sorry I can’t be more tecnical).  it didn’t hurt – the examination hurt more because of all the air he had to pump into my rectum – you know how it goes!

The next day I saw my Gastro consultant and told him what the surgeon had said.  He was very wishy washy and hesitant, saying he thinks I should wait a while for surgery and see if it spontaneously settles. I then confirmed I had now had this for ten years and he started to change his mind.  We left it that I would see him in two weeks and he would refer me to a Stoma nurse.

Two weeks later and we get to today.  Luckily I have been able to see my consultant and the stoma nurse today which was sooner than expected.  My first app was with my consultant who, as usual, asked me how I was, and, as usual I told him that I was going to the loo 4-6 times a day, mild pain sometimes worse sometimes better, lots of bleeding, very tired.  He then said (get this for bad English) “it is unlikely that you won’t have to have surgery sometime soon”.  My brain tried to work out what this sentence meant until I had to ask, “do you mean it is likely that I will have to have surgery soon?” and it would seem that the answer to that is “yes”.  He agreed that we should defer for the time being until I feel more comfortable about it all as ultimately if I were to go into crisis they could operate within 24 hours.  I am to see him in six weeks time or before if I prefer.  My Gastro team are fantastic and all I have to do is call them and they get me into that weeks clinic so it is a very flexible arrangement.

To this point I have been before, twice, but the next appointment, with the Stoma Nurse was one step further along the process than I have been up til now.

M was lovely.  I had my two year old son with me, who wanted my attention, so chatting wasn’t easy but we covered a fair bit of ground anyway.  I learnt a lot – which surprised me as I thought I had read nearly everything I could on this – clearly not and clearly the Internet is not the font of all knowledge we assume it to be nowadays.

What I learnt:

  • the first operation is major surgery lasting approximately two hours.  Here they remove the entire large intestine (they rarely leave any as although they could just remove the infected part UC has been shown to appear in the bit that’s left if they leave it so nowadways they just take the lot and be done with it) and then connect the end of the small bowel to an opening on the right hand side of your abdomen, about level with your tummy button.  This is called a Stoma (which is Greek for opening!).  The end of the small bowel creates a a little spout approximately 2-2.5 cms long which protrudes from your abdomen (hence spout!).  The bag (of which there is a huge variety and it is trial and error as to which one any individual prefers) is then attached onto your stomach encompassing the stoma.  It takes 4-5 days in hospital and then about 6 weeks to recover physically from this operation. This Stoma is temporary and will be left for 3-6 months depending on rate of recovery
  • if you so choose, and most people do nowadays apparantly, you then go on to have a second operation.  This too is a major operation which lasts approximately 2 hours and takes the same recovery time.  This operation involves taking the end of the small bowel, attaching it to your rectum (which in most cases is left intact from the first surgery although is occasionally removed – as mine is badly affected by the disease it is possible this will be removed too). They then snip the bowel in two places and stitch it all together to form a pouch – a J Pouch (I could illustrate why it is called a J Pouch with paper and pen but not with words unfortunately).  Eventually, to all intents and purposes the patient will look and have bowel movements much the same as a normal person – no bag.
  • The second operation also involves creating another temporary stoma with a loop of the bowel in order for the newly formed J Pouch to be given the opportunity to rest and recover from the surgery.  This takes 3-6 months.
  • After 3-6 months, they test the new pouch to make sure it is all recovered and functioning properly and they then do another minor surgery to close the stoma and allow the bowels to start functioning properly.
  • During all of this time it is important to do daily pelvic floor exercises so that when the J Pouch is allowed to function you have better control of your bowels.  Initially control is hard and although you won’t suffer incontinence you will need to go urgently – much like with UC but without the pain, bleeding or discomfort.
  • Approximately 12 months after the last surgery is when people report they have full and normal control of their bowels and move on to be ‘normal’ again.
  • After the initial surgery people normally report feeling a whole lot better very quickly. Their energy levels rise significantly and they generally just feel well again – the disease is no longer existing in their bodies so their immune systems aren’t in overdrive.
  • She showed me a bag and gave me a test kit so that I could wear one for a day as though I had had the surgery.  I don’t feel up to doing that yet, it scares me horribly.
  • The bag has to be changed daily and drained regularly throughout the day.  They give you thickening agents and potions and lotions to allow the slop that comes out of your bowels to be less sloppy (it is all liquid that goes into the bag, no formed stool as there is no large intestine to form it!).  I can still dance but might want to empty the bag before hand so it is not sloshing about (nice!).
  • You do get wind when you have a bag but the air is release through charcoal filters so one benefit of this surgery is that your farts don’t smell!!!! – i’m all for looking on the bright side of things 🙂 The other side is you can’t control the farts – bonus! (sorry, anger makes me sarcastic).

This is such a crappy, crappy process.  I am looking at nearly two years worth of surgeries and recovery periods.  I know that almost immediately I will feel so much better and it will be a relief to know I don’t have the disease anymore but two years is a long time of having your life on hold and not being able to make plans.  Three surgeries and recovery times is a long time in which somehow we have to find help with the kids and N has to continue to work. Two years is just a long time.

The Consultant wants me to wait a while although what for I don’t know, I think he just wants me to make the decision and doesn’t want to influence it.  My Stoma nurse said that although harder mentally, it is easier physically to elect for the surgery rather than getting to crisis point.  The colorectal surgeon I saw (probably the one to do my surgery) thinks I should get on with it.  I don’t know what to do.

It sounds completely over dramatic but I feel I am handing myself a life sentence which is not much better than the one I already have.  I feel weak that I can’t tolerate this disease and live with it.  I feel like I should be tougher and made of sterner stuff and just live with it.  I feel scared that it could become cancerous and I would then be putting my family through even more hell, when if I have the surgery I can save them from that. I feel relieved that eventually my life might go back to normal without a bag and without the pain of UC but I also feel anxious that nothing has ever gone as it should for me (medically) and therefore why will this be any different?  Will I be the one who goes through years of surgeries and pain because of cock ups and infections? Will I die? I’m not too concerned about this but I guess when you are facing major surgery you ought to at least let it cross your mind. Will my marriage survive?  We’ve had some pretty tough times which we have worked through and made it through but will we make it through this?  Is it okay to cry about it?  Sometimes I don’t know, sometimes it makes me feel pathetic, sometimes it makes me just want to get away and sleep, shut it all away and save it for another time.  Is it all going to be okay?  Now, there is the big question, the one no one can answer but the one everyone will try to answer.

Anyway, the Stoma nurse is going to put me in touch with a few people, my age with similar lifestyles so that I can have a chat with them about it and see how they have got through it.

I am sure I am worrying a little too much and maybe not quite enough but I guess that not everyone has to face this kind of shit and I am entitled.

Off to mooch – just a little bit and then spend the weekend dancing my troubles away 🙂

{February 18, 2008}   Catching up

It has been so long since I have written my blog that I couldn’t remember my password! Ooops.

Here now though and feeling in the mood to write something so here I go…

I guess I haven’t written anything because I am feeling well and when I am feeling well I run around like a headless chicken doing this, that and the other and not finding time to sit at the computer and write.  I don’t really have time today but thought I should find the time, mainly inspired by my friend Ali and her resurgence in writing her blog.

So, what can I tell you?  Well, not a lot as far as my UC is concerned, which is definitely a good thing.  I have off days but in general the Infliximab is doing its stuff and working a treat. I now go into hospital for the day every eight weeks to have my infusion and in between times I am on no medication – other than the contraceptive pill.  For the first time in years I am merely on one pill a day as opposed to 20 plus – it is great! So, as far as my UC is concerned there is nothing to tell, I am well and I am making the most of it.

I have felt a bit down at times lately reading Ali’s blog, mainly because her recent experience reminds me that this damn thing can get me again at any time and take my life away again.  No matter how temporarily I really can’t face this happening but rather than dwell on it I am doing my best to ‘cross that bridge when I come to it’.

In the meantime I continue to be a Wife, Mum and am completely mad about dancing still.  I no longer Jive very much, preferring a new dance style I am now dance called West Coast Swing – no doubt I have mentioned this before 🙂  I take classes once/twice a week and then do workshops each month, which are intensive classes for up two hours plus with professionals.  All in all it is brilliant.  I have TONNES to learn but am loving learning it and best of all so is my husband.  He is now mad for West Coast and possibly more into than I am, if indeed that is possible 🙂 Unfortunately we don’t get to dance together out of the house very often due to babysitters but we have already been on one weekender this year and are heading to another very soon.  Dancing definitely helps keep me fit and healthy and most of all very, very happy! Once again, I advocate trying it 🙂

Other than my dancing I do little else outside of the family.  My boys are great, one at school and one at home with me all day and are growing up quicker than I can believe.  I can’t quite get my head around the fact that W is my last and is swiftly heading towards school too. I have been thinking a lot about what I will do when he is not at home with me anymore but have decided I can’t draw any conclusions right now and am going to continue rolling along and just enjoying life as it comes at me.

I am definitely waffling and feel only more waffle coming on so I shall sign off and do something productive with my time!

Bye for now.

{November 6, 2007}   Sleepy

For some reason the last four days has seen my entire body itching and I have scratched myself raw. I have bruises all over my legs where I have been scratching like a dog with fleas! I saw my consultant today and we assume that as I am now off my Cyclosporin and hadn’t (until this afternoon) had Infliximab for 7 weeks, I must be having an allergic reaction to something else. They have given me Piriton to ease the itching but so far all it is doing is making me very tired.

My blood tests came back normal this week apart from low iron levels so in two weeks time they shall make a decision as to whether I should go back on the Cyclosporin or not. They are reluctant as they think my kidneys will struggle again but they might give it a whirl.

I was kind of relieved to hear that I was still anaemic as I have been feeling really tired recently and finding that I am very weak when dancing. I am still completely stupid and always put my anaemia symptoms down to a million and one other things. I have no idea why I can’t just recognise these symptoms which I have frequently, as anaemia – it is like I have a mental block about it. Anyway, I shall up my iron tablets and try and get that sorted again as when it is level I feel so much better in myself.

Anyway, I spent another boring afternoon having the Inflximab infused. This time they had to give me a single dose of oral prednisolone to counter any possible hypersensetivity reaction to the Inflximab. I was fine and had no reactions, just boredom from being stuck in a hospital all day! Hopefully this will work, although they have no idea as I am still their only UC patient to take it and there is no case they know of people being on it without Prednisolone, Methetrexate Azathioprine or Cyclosporin so only time will tell. As my Gastro nurse says – I am “difficult” 🙂

Well I have not long just taken another Piriton and can already feel it beginning to knock me out so I shall crawl into bed. Fortunately N is off work this week so I am going to be able to take it tomorrow and not worry about having to care for the kids whilst completely dozy!

Off for a knock out sleep…

{November 5, 2007}   Back now

Ali updating her blog after a long absence (welcome back Ali – missed ya x) prompted me to get myself into gear and update mine, so here I am am.

Life has pretty much been the same as ever with family and dancing and nothing particularly exciting to report.  N left his job on Friday so next week (he has a week off now) will see us embarking on a new chapter in our lives as we have no idea how this new job is going to effect us as yet. Currently N is home by 6pm every evening but I suspect that from now on that will be rare which will make a difference to me in that my day becomes even longer when dealing with the children.  Still, they are being ever so good at the moment and a joy to be around so I am not concerned.

The past five weeks have seen a marked improvement in my UC.  It has never been more settled with me being completely ordinary and only going to the loo once a day! I can’t remember the last time that was and is has been very weird.  All of a sudden I literally have extra hours in my day that I don’t know what to do with, it was great.  You will note I am using past tense – yep, my total remission was short-lived 😦

A week ago I got a call from my GP to say that my regular blood tests had come back and weren’t good. They were as follows:

Sodium: 136

Potassium 4.6

Urea 9.3

Creatinin 114

eGFR 51

Basically, the problem is my kidneys as marked by the creatinin level.  By baseline level of creatinin prior to starting Cyclosporin in November 2006 was 88.  88 is the number they measure against and if it goes above this it is bad.  It has got as high as 91 before but that is nothing to be concerned about but 114 is bad and means my kidneys are  starting to struggle.  I was told to stop taking the Cyclosoring immediately, which I obviously did.

Within four days I started bleeding again and am getting progressively worse each day.  I am due to have my second infusion of Infliximab tomorrow afternoon but they don’t hold out much hope of it doing anything for me if I am not on the Cyclosporin as my body will start to build antibodies against the Inflximab very quickly without it.  They re ran my bloods last week and I am waiting to hear the results. If they are not good still then things don’t look too great for my future unless my body decides to give me a break and only flare up a little.

Meantime I am not dwelling on it.  I am crossing bridges as I get to them and meanwhile jusy carrying on as normal.

Anyway, my little’en is alseep in the car and needs checking on.

I shall write again soon.

et cetera