Post Infliximab Treatment

The treatment went fine yesterday and so far I have suffered no ill effects whatsoever.

I got to the hospital and was taken straight to my mini room.  There they weighed me (exactly 8.5 stones), took my blood pressure which was fine, pulse (very chilled at 54bpm!) and a urine test to check for pregnancy and infection which was clear (thank GOD!).  The nurse explained that I must not get pregnant whilst on this treatment and for at least six months afterwards as there is a high chance of feotal deformity and problems.  I have absolutely zero intention of getting pregnant (my worst nightmare now) but I am going to the doctors tomorrow to arrange to have the implant to be doubly safe.  Currently we just use condoms as I have always  suffered badly on the pill but it is time to try the implant and see how I get on with it. I could have a coil fitted but as my sister just had a baby whilst one was still fitted I don’t rate it too highly! Anyway, I shall sort that out tomorrow when I have to go in for my regular blood tests.

I am still on my cyclosporin as although unusual, infact, unique in my area, to be on both drugs supposedly it won’t do any harm, however should the Infliximab make a difference they will then wean me off the cyclosporin.  I have already been on it for six months longer than they would normally have someone on it.

After the initial obs I then had my cannula fitted (always interesting as my veins are a nightmare to get) and the drip was started and ran over the course of two and a half hours.  It was fine, no pain and I just chilled out with my Ipod and a good book.  It was great actually as normally that time of day is school pick up and then the nightmare hours of food, bath and bedtime – give me an infliximab infusion anyday 🙂

My Gastro Specialist Nurse (who is fab) explained that I am the first UC patient they have ever tried Inflximab with and that they were using it slightly out of its licence as it is yet to be approved for the treatment of UC.  They have had great success treating Crohns patients with it but no experience with UC – once again I am their guinea pig!

I am to go back in two weeks when I should have noted a marked improvement in my symptoms. If I haven’t then it hasn’t worked and I shall continue on Cyclosporin with a view of heading towards a total colectomy (not gonna dwell on that right now), if it does work then I shall have another infusion in six weeks time and be weaned off the cyclosporin.

Fingers crossed it works.

One tip for anyone reading this: this treatment is expensive, as is Cyclosporin.  Steroids are cheap and hence they predominantly use them but if like me you refuse steroids for sound reasons (side effects in my case) then they will explore other treatments.  If you merely uncomfortably live with the side effects of steroids and don’t put your foot down you will not be offered these more expensive treatments.  I understand the NHS system now and the one thing you have to be when dealing with a chronic illness is assertive and always insist on all the available options. There are better options out there which give a much better quality of life than living with the side effects of steroids.

It’s my nanny’s last day today which is very sad so I am now gonna go off and wrap her gift and prepare for an afternoon of tears 😦

A memory of Easter

This writing stuff is getting a bit addictive, probably because it is somewhat cathartic to get my thoughts out of my head and into words.  Actually, this is hugely stimulated by the fact that normally I spend every evening waffling on to my husband about this, that and the other.  In the last four months he has been training most nights in order to run the London Marathon in April so I have found myself with no ear to batter and thus a need to purge my thoughts elsewhere – welcome to my waffle 🙂

It’s three weeks until Easter and I have been planning what I want to do.  I am quite the planner it has to be said but Easter has loomed large in front of me for a while now as a time I should make the most of.  It didn’t dawn on me until this morning why.  I am now guessing that it has a lot to do with the fact that last Easter was appalling, and for the first time I feel a great need to get this little episode of my life into words – feel free to quit reading at this point as this could be a long one!

At the end of January I had my second baby boy, at home with no pain relief.  I don’t tell you this to pay homage to my own amazing feat of nature (although it felt like it was worth paying homage to at the time!) but to show why this time was stressful, as if having a  newborn isn’t stressful enough, and also to demonstrate that my pain thresh-hold is significantly higher than most.  Any woman who has been through labour will appreciate this (and any bloke that has watched it actually!).

From the day that W was born things went from bad to worse.  Fortunately he was and still is the easiest child to manage and has always taken everything in his stride – thank goodness.

My colitis had been dreadful throughout my pregnancy but afterwards got much worse.  This was probably largely to do with the fact that my body was totally and utterly knackered after having had a baby and then caring for a newborn. Just before Easter I was told that they would need to admit me for IV prednisolone (they can give larger doses through IV) and that I would be in for a week.  However, as Easter was coming up they couldn’t admit me until after. As I have previously mentioned in my blog, when consultants are on holiday everyone has to stop being ill! My consultant advised that if I couldn’t cope over Easter then I was to come in through A&E.

By Easter morning I honestly thought I would die from the pain.  As we have established, my pain threshold is fairly high but I was in agony.  We were due to go to my niece’s Christening that morning but I told my husband that I could no longer cope and had to go into hospital. I persuaded him to take the kids to the Christening and I got my Mum to drive down to take me to the hospital. It was an agonising 30 minute wait for her to get here – by then I just hoped to pass out so that I could go through the whole experience unconscious – this wasn’t to be.

What a pants morning that was.  The A&E SHO left my hands bruised and in agony after his pathetic attempts to insert a drip, as if I wasn’t in enough pain.  After an hour, which was pretty swift, I was moved onto the Emergency ward, where I was to spend the next 48 hours (a result of it being Easter and nothing happening). At this point I was heading to the loo over 8 times an hour – an absolute nightmare.  I do remember that an old bloke was in a bed next to the loo and I just felt mortified that every-time I made my way there he said hello to me – he must have wondered what the hell was wrong with me, or, why I didn’t just stay there. I would get back to my bed and within a minute be trotting back again.

I will never understand why pain relief has not been developed for IBD sufferers.  The only pain relief (for this and anything else) that can be taken is paracetamol as anything stronger irritates the condition and makes it worse.  Paracetamol isn’t worth the effort of taking as it does absolutely nothing for pain management once things are that bad.  The only way to get rid of the pain is to get the inflammation under control which is no quick thing to undertake.

After two days I ended up on the old folks ward for 24 hours (no other beds) and that was like being placed in a kind of hell.  I felt so sorry for these elderly patients who had no help and no family. They were just dumped in beds and left as the nurses didn’t have the time to give them the compassionate care they needed.

Fortunately come the Wednesday the consultants were back from their hols and I was able to use my husbands insurance to get a bed on the private ward.  It was like going from living in a slum to a five star hotel, absolutely fantastic. I tend to have all of my treatment on the NHS as I wouldn’t get any better treatment privately.  I would still have the same consultant and I can actually see him more regularly and at a better time through the NHS. I have to say that where I am now the NHS Local Health Authority has the best Gastroenterology department I have known (I have been in four, including a major teaching hospital in London which was horrendous!).  I have my main consultant, another consultant who I can see if Dr D is not around – both are lovely and fantastic, they always make me feel very comfortable and explain everything.  I also have a fantastic Specialist Nurse who is on the end of the phone or at the hospital whenever I need her, she is brilliant.  There are also the amazing clinic nurses who always know my name and ask me how I am  – they are a great bunch.  The only time I use my insurance is when I am admitted as the hospital wards are dire, the food is like something out of a dickens novel and the lack of privacy is awful, particularly with this condition – give me the private bedroom and bathroom any day, I am very lucky.

The major downside was that of course I had a newborn baby (and a two year old) that I was only able to spend a maximum of an hour with.  It was so heartbreaking. I had already had to give up breast feeding which is not an easy thing for a mother to do and now I wasn’t even able to cuddle or spend proper time with him – I cried a lot that week.

Fortunately after a week the steroids had kicked in and I was allowed home.  I had come back from the brink of surgery at that point but only for a few weeks.  This was the beginning of a year of hospital admissions and hospital trips but they are whole other stories.

So, this is why I am determined to put these horrible memories aside and have a more pleasantly memorable Easter this year. I’ll let you know what I get up to but you can guarantee that it will involve dancing somewhere.

Steroids

A few people have asked me recently if I am going to go on steroids (prednisolone) again. The answer is no a massive, huge, resounding NO! I hate them and Dr D and I have come to an agreement that he shall never ask me to go on them again.

I was diagnosed with UC in October 2000 after a year of hellish symptoms.  I was immediately put on a high dose of steroids and then a year of my life was spent living with the crappy side effects which were as unpleasant as the symptoms of UC (the first of many years on these damn drugs).  Without doubt steroids calmed my UC down but it still festered away with no way near 100 per cent relief.

I had horrible body tremors, particularly in my hands.  I dropped things regularly and shook like an old woman and could barely write properly.  The most embarrassing thing was that when like this everyone took it for me being nervous which for my particular job was awful.  I was working in sales and then moved into major gift fundraising for charity.  Day in day out I had to meet people and ask them for money.  Not the easiest thing to do at the best of times, particularly when my job involves asking people for thousands not just pounds.  I’d sit there in some posh hotel or house, unable to refuse the inevitable Earl Grey and then have to deal with a shaking cup and saucer – try explaining that when you are meant to appear ultra confident!

That was just one symptom.  The worst was the pain and stiffness in my joints.  When on steroids I very quickly get to the point where I can’t walk 100 yards without being in agony and therefore end up being housebound.  There is no concrete medical evidence which points to steroids being the cause of this.  The medical explanation is that I suffer Inflammatory Arthritis as an associated condition with UC.  I do not believe this.  I only ever have joint problems when I am on steroids.  Within a couple of months of coming off steroids my joints are fine.  I have recently read a lot of anecdotal evidence which suggests that my experiences are increasingly common for those on long term steroid treatment but as ever more research is needed.

Other yukky symptoms – the moon face and weight gain.  I am normally a size 8 with a petite frame.  When on steroids I bloat to a size 14 within months and my face disappears into this podge of fat – it’s horrendous.  This change is so quick and then lasts for the duration and just flattens my confidence.  It is awful looking in the mirror expecting to see you and finding this person who is not just a lot bigger but looks entirely different too. It is amazing what steroids do for your appetite.  I am ordinarily a healthy eater, I enjoy food and eat well but when on steroids I am constantly ravenous and eat 4 times the amount I normally would.  It is the only insight I have ever had into how obese people with serious food addiction suffer.  It is IMPOSSIBLE to avoid food and when you are that hungry you just have to eat, and eat, and eat, and eat.  The only positive thing according to my husband is that when on steroids he can take me out for a meal and feel we have got our moneys worth as not only do I not leave a thing on my plate but I leave nothing on his too 🙂  You also eat so quickly when on steroids and are never, ever full – it’s like having a bottomless pit. To be honest, I just couldn’t stand the amount of time I was spending eating or thinking about eating.

This massive weight gain (and eventual weight loss) over short periods of time lead to horrendous stretch marks in the most weird places.  I have had two babies and neither have left me with any stretch marks – yet steroids have. Okay, to everyone else they are probably pretty much invisible unless I point them out, but to me they are very obvious and I hate them.

This all makes me seem very vain.  I really am not, well, no more than most, but when your body undergoes such massive changes so quickly it is hard to accept and come to terms with them.

Lack of sleep was another problem. A lot to do with being constantly starving and having painful joints but sleep becomes a thing of the past and sleeping through the night an impossibility – which does nothing for your ability to live a normal life.

Other minor but irritating problems at the times has been in the past when my husband and I have wanted a baby and not been able to get on with it until I was able to come off the steroids – very frustrating.  Then there is pregnancy itself. Inevitably during both of my pregnancies my UC flared up badly and thus I had to go back onto steroids having come off them to get pregnant.  This induced gestational diabetes which made my pregnancy even more difficult – I now have an insight into diabetes and injecting insulin which is no fun for people either.

All in all my entire experience of steroids has been horrendous so after six years of putting myself through the mill on them I finally put a stop to it last year and refused to take them anymore.  Ultimately, the damn things never took my UC symptoms away completely they just prevented it from getting to the point of surgery.

I say all this whilst being fully aware that steroids are one of the miracle drugs of the twentieth century and have saved thousands of peoples lives.  UC sufferers frequently died prior to the development of steroid treatments and modern management methods so we have a lot to thank them for, but my experience and I know that of others certainly doesn’t make them a drug of choice.

So, for those that ask, now you know why I shall never be taking them again.

New drugs but less hope

Last night I went to my second Jive class of the week. Unfortunately it didn’t go to well as after an hour I was feeling exhausted and had to leave – normally I can manage the full three hours. However, for the hour I was there I felt really good as I got loads of practise doing three different types of drop which I absolutely love doing but very much need to perfect. It just feels so glamourous to be dropped elegantly and effortlessly. It is also doing wonders for arms. I noticed today that after only two months the muscle definition in my arms and legs is very noticeable and I have definitely toned all over. I was also weighed at hospital today and have lost nearly half a stone and am now 8 stones 11lb. I think this is incredible after such a short period of time – it just goes to show how good dancing is for you.

As just mentioned I was at the hospital again today. I told my consultant how exhausted I have been in the last few weeks and questioned whether I am anaemic again – a fairly regular thing as I lose quite a lot of blood. My blood tests show that I am not iron deficient and he thinks it is just because the disease is flaring up again. He is reluctant to forward me for surgery as the disease presentation is so mild as confirmed by my flexi sig results but my symptoms are so severe he feels we are fast running out of choices. I am to start a new drug tomorrow, can’t remember the name and can’t be bothered to go downstairs to check but it is a steroid that is not absorbed and I should therefore not suffer any of the symptoms that I have had on prednisolone in the past. The downside to this is that it is normally only effective on upper GI tract disease (Crohns) and is rarely seen to have any effect on ulcerative colitis but as he says he ‘is scratching around’ for anything to try before resorting to surgery. I am to be on this for a week as that should be long enough to show results if there are any. If not he will try me on Infliximab but again he doesn’t hold much hope for results with this as it is an effective treatment for Crohns but not UC.

For the first time it is fast dawning on me that I am almost out of hope. I so desperately don’t want to have the surgery. I am sure it would improve upon my quality of life in so many ways but in others, i.e body confidence and psychologically it will be so, so difficult to live with. It may sound shallow but I feel even more desperate not to have the operation now that I have discovered dancing. For the first time in years I am enjoying myself and having a life outside of my family and I love it. I really don’t want to give it up but know for sure that should I have the operation I will have to, if not forever then for a very long time.

I kind of feel like I want to get depressed about it but at the same time can’t allow myself. I have two amazing children and a wonderful husband who need me to stay strong. Fortunately they are there to prop me up when it gets me down. I also know that come what may they will always be there to cheer me up. I think that in the long run the operation would be a good thing for them as it would mean I would no longer be so ill all of the time and would be able to enjoy a different but better quality of life with them without the constant ups and downs. It would also enable us to plan things as we would not have to continually be waiting for the ‘axe to fall’.

Do you know what, I still can’t be bothered to think about it, or maybe I can’t face it? whatever it is I am going to stop thinking about it now. Instead I am looking forward to a dance party I am off to on Saturday night. It is a purple party so yep, everyone will be wearing something purple and jiving the night away. Not the most flattering colour on me but I am up for making the most of this social life whilst I can.

Jiving with Ulcerative Colitis

Well, it would seem that I have finally done it. Finally, after many weeks of thinking about it I have got myself into gear and set up this blog, whether I am committed enough to write regularly time will only tell but I shall give it a go.

I have decided to write this after a difficult six years managing a chronic illness called Ulcerative Colitis which is an Inflammatory Bowel Disease. It’s been a nightmare managing to live with such a painful and crappy illness, particularly over the last two since getting pregnant with my second baby. To be honest, in the last two years I haven’t had much of a life, well, social life anyway (big ahhh!) but recently things have changed. I shall explain..

After an almighty flare up resulting in numerous hospital visits, admissions and various procedures (as well as the compulsory pain and discomfort) we, my consultant and I, finally got to the end of the road. I’d tried all the drugs, prednisolone, mezalazine, sulphasalazine, azathioprine and methetrexate, in various enema, oral and intravenous forms with no joy. I reacted to all and none even touched my illness. The only thing to do was to have my large intestine removed and an illiostomy (yep, I would then have a bag for my poo!). You can imagine, this was clearly something a young women would look forward to. Fortunately for me, there was one last drug we could try, it was a long shot but worth a go – cyclosporin.

Well, I could right an ode to cyclosporin as it amazingly worked and since November 2006 I have been in remission and finally able to lead a more normal life.

Recovery after sustained illness is a long road, and with a chronic illness like UC there is no telling how long remission will last and therefore if you will ever get to the end of the road to recovery – but I am trying.

One of the ways I am trying is hinted at in my blog title – Jive, Modern Jive to be precise. I am now, after 7 weeks, a confirmed addict and loving every minute of it.

Every Sunday, and most Tuesdays I put on my dancing shoes and head down to a Jive Class which has turned things around in ways they could never comprehend. In October I could barely walk out of my house due to associated inflammatory arthritis, a complication of UC. To now be dancing for 3-6 hours of the week is an absolute miracle and not only has it effected my fitness and general health in a hugely positive way but it has given me back my body confidence (something you lose when you have to go the toilet 12-20 times a day) and my social confidence, I haven’t been able to socialise in such a long time I wasn’t sure if I could do it anymore – but I can.

I guess over time I am just intending on writing about living with Ulcerative Colitis and the positive things in my life which get me through. It will be interesting – to me, anyhow.

Bye for now,

Lottie