Jiving on Regardless

{September 24, 2007}   Contraceptive and me

Since having the Infliximab treatment I have had zero side effects which is some what of a miracle as there are few drugs I have been given that haven’t effected me in some way or another.  I am not sure that it has had the desired effect though, which is disappointing.  Saturday was a bad day with my UC and although that last two days have been a little more settled I can’t say I have noticed a vast improvement, although I am not bleeding nearly as much as before.  I am hoping it just needs a little more time.

As my Consultant recommended I went to my GP on Friday morning to sort out contraceptive.  What a palaver.  I can’t have the implant or injection as they could effect my Cyclosporin levels, I can’t have the combined pill as I am due to see a consultant about my breast problems and if there is a problem the combined pill could exacerbate it. I won’t have the marina coil fitted as I don’t trust it as both my sister and a friend have got pregnant on it. This left the mini pill which is not ideal as in years gone by I have reacted badly to it, however the one I am on now is supposedly quite new and shouldn’t have the same effects – Cerazette. So, after much Internet searching and discussion with her colleagues (I was there for an hour) this is what was decided and I have now started taking it.

This new GP commented on what a ‘challenge’ I am – as previously noted, she is not the first to recognise this and I am sure won’t be the last.  I am resigned to the fact that I was born to be awkward – and not just medically 🙂

I had a pleasant weekend although I haven’t danced since our weekend away at Southport and am now gagging to get back to the dance floor.  My regular Tuesday night is cancelled so I now have to find a new venue for this week as I shall go mad if I can’t dance until Friday.  Friday should be excellent though as I am going to a new Blues Club – very excited!

Anyway, B at school and W at nursery so I had better get my house clean 😦


{September 20, 2007}   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 😦

{September 19, 2007}   Infliximab Treatment Today

I haven’t been blogging for a while as I have had so much to do recently and not enough time to do it.  Since my oldest started school a few weeks ago my daily routine has changed loads, not least the fact that I now spend two hours a day walking to and from the school!

Last week was spent getting the kids, the house and ourselves ready for our weekend away at Southport.  This time my husband came with me and my in Laws had the kids at our house for the four days.  We had such an amazing time.  We danced for hours and hours each day and it was truly magical.  Once again I learnt so much and developed so much in my dancing it was fantastic.  We have now booked for February and roll it on.  The only down side to the weekend was that my colitis was a nightmare.

I attempted three classes and only made it through one of them late on Sunday afternoon, up until then I had to keep giving up after ten minutes.  Sharing accommodation with another couple didn’t help either so we have booked our own place for next time so that I can manage my colitis more comfortably.  I wasn’t in too much pain I just had to keep making a dash for the loo.  It wasn’t too bad freestyling as I could manage up to three dances and then leave the floor for a while, it could have been better but it didn’t detract from the amazing time I had.

Last week I also spent my time to and from the hospital having blood tests, a chest x-ray and a heaf test in preparation for my Inflximab infusion today.  I am heading into the hospital in about an hour where they will then infuse the drug into my arm for two hours and I then have to spend a further two hours being monitored.

Fortunately the Treatment Centre I shall be in is brand new and I shall have my own little cubicle room thing to be in.  I have my I-pod set up with lots of Russell Brands shows  – he has me in hysterics so I am looking forward to those, I have a new book and shall just spend the afternoon chilling out. Having this kind of treatment doesn’t faze me any more, I just get on with it and look on it as a time to chill out without the kids 🙂

Hopefully this drug will make a difference though as the UC is starting to effect my dancing and I can’t be having that.  I am not actually sure how I would cope if I had to give up dancing now, it would drive me insane!  Next month I am starting to learn West Coast Swing,  a beautiful partner dance. I can’t wait, but it is going to take a lot of commitment and hard work.  I am going to be doing two lessons a week for the foreseeable and lots of practise so I want to be healthy for it.  I am determined to become very good at it!  I also go back to my degree studies next month so yet another reason why I need my UC under control.

I have been on anti-depressants for a month now and am feeling so much better for it.  Life is finally in a very good place right now so fingers crossed it just gets better after today.

{September 3, 2007}  

I haven’t written for a while as last week was a VERY busy week.

On Tuesday I called the nursery that my oldest used to go to to confirm a place for my youngest.  I had in-fact arranged this a month ago and paid a month in advance but I had faffed with the date and had lots of contact with them which hadn’t made much sense.  Finally on Tuesday I confirmed that I wanted him to start and they then said he could start settling in that day!  This threw me into a right tizz as I couldn’t let him start without giving our nanny her notice as it wasn’t fair for me to lie to her about where I was taking him on her day and also the nursery is the one I poached her from and she has a lot of friends there.  This threw me even further off my game as I then had to give her her notice that morning.  I was going to give it to her that week but needed some time to get my head around it.  It wasn’t to be.  At 9am I confirmed that W would do his first of three settling in sessions that week at 1pm for two hours, by 10am I was giving K her notice.  She was shocked that it happened when it did but not so surprised as her job was obviously on dodgy ground once my oldest started school next week.

So, last week was spent fretting over my youngest son whilst feeling like the most wicked mother in the world for leaving him in nursery.  I forgot how heart wrenching it is to hear them shout’Mummy’ whilst relentlessly sobbing as you leave them 😦  However, he has now done four sessions and seems to be getting better and better so I am sure he will be fine.  My nanny leaves at the end of this month and I shall then have my oldest in school full-time and my youngest in nursery for two school days a week.

Although I am still keeping an eye out for a local job I have made the definite decision not to return to work in London just yet.  Maybe when both of the kids are at school.  However, I need to do something with my brain.  I started an OU degree a few years ago and although at the time I was thinking of doing psychology I have now changed my mind and decided to do Politics.  I find politics fascinating and have always dreamed of working in that arena, possibly as a political fundraiser.  My most outrageous dream is to work at the White House as I love US Politics, I find it fascinating but I am not nearly intelligent enough 😦  However, I figured I can’t realise a dream if I don’t try, therefore I have signed up to do an OU Diploma in Politics over the next two years with the option to go on to complete a degree, which I am pretty certain I will do if I get that far.

I start in October and am very excited.  It feels like the best thing I have had to do in a long time.  I really enjoyed my OU studying when I last did it and anticipate enjoying it even more this time as my brain won’t be involved in anything else particularly strenuous whereas last time I was working full-time.

You can probably tell that I am back on track and that the anti-depressants are definitely helping.  I am ten days in and I am surprised but pleased that they are working already.  I feel so much better, no side effects and I haven’t had a flat moment for days.

My UC seems to have calmed a bit although I am still going ahead with the infliximab treatment booked for two weeks time.  Prior to having the test I have to have a Heaf Test to check immunity against TB, if I don’t have enough immunity I shall have to have a BCG.  I am sure I won’t need it though as I have been immune since having my BCG when 15.  I also have to have a chest x-ray to check that everything is clear. In the meantime they are investigating whether or not it is possible to have infliximab and cyclosporin together.  They suspect not as they both decrease your immune system in slightly different ways and it would leave me to vulnerable to tumours and leukemia, but if I can then they may advise it as I am doing fairly well on Cyclosporin and perhaps just need an added boost of inflixmab.  This all requires loads of trips to hospital. One trip for an x-ray and standard bloods, 1 trip for the heaf test and another two days later to have it checked and then an afternoon in for the infliximab infusion.  This will all do my head in although I am re-reading all of the Harry Potters (I am a big kid at heart) and have my Ipod with numerous podcasts and albums on so I should be more entertained than I have in days gone by 🙂

I haven’t been dancing much in the last week as I have had too much to do but shall make up for it in 11 sleeps time when I head for another weekend in Southport, this time with my lovely husband – I can’t wait, we shall have so much fun if last time is anything to go by and will be great before I head into the unknown of this new treatment and what may come with it.

Anyway, despite it only being 8.30pm my bed is calling me. I feel shattered today and am out tomorrow night so figured an early night is in order.

et cetera