How much would you give for a 'normal' life?

5 years into this crappy disease, I often wonder what it would be like to be 'normal' like everyone else again. But what is normal anyway and is it all really only a facade? People put on such false faces all the time and why, just to look better in front of other people or pretend they have more than they really have. What a lot of wasted effort. UC unfortunately teaches us all about humility. I don't even know how many little 'accidents' I have had in the last few years, but each time it happens in public I deal with it and clean myself up and deal with the pity others show for me. How humiliating but with it comes inner strength. So maybe I'm richer for my own type of 'normal' life but no, I wouldn't wish it anyone else.

Update on life :D

As I sit here typing I have the unfortunate pleasure of listening to Duff-Duff music from a teenagers party next door on a working week night close to 11pm !!  My brain is saying "Shut the F@$! Up your little shits as I need to be up at 6am, but my heart says let them have fun...they are young..their parents (one an ex MP) are away and it's summer holiday time here....come 1am though my head will be telling me to just call the police the get them to be quiet if it's still going!!

Oh good god..we've now switch to Dexy's Midnight Runners and "Come on Eileen"..well at least the DUFF DUFF has gone.

I had my GI appointment yesterday and still no mention of the dreaded Colonoscopy procedure...so I'm sorry...but I'm not asking for that procedure ... she'll have to tell me it's time!  'Chicken' - I know, 'Get it over and done with' - I know, 'See how everything is hanging in there' - it hasn't been!  It's angry and inflamed.

I did however tell the GI the facts as things stand right now and we're making a few med changes just to see what happens over the next 5 weeks.  I can still work though and I'm getting through the days without too many 'OMG...run!'

Life isn't that bad really....it could be worse I could be a spotty teenager going through all that hormonal stuff again!

Happy New Year to all that read it.

........ and just in case your the same age as me and have had the memories of your teenage years brought back by the thoughts of Dexy...here's the link to the tune :D - Dexy's Midnight Runner - Come on Eileen

but here are links to some of my favourite songs from the 1980's and the good old days :D

Visage - Fade to Grey
Icehouse - Hey Little Girl
Ultravox - Vienna
The Human League - Don't You Want Me  - I grew a rat's tail because of them too!!!! :D
The Boomtown Rats - I Don't Like Mondays

there's plenty more...but you go find your own :D .... ah...the 80's ....when boys wore makeup and had perms and nobody thought that was strange .... I loved the 80's!!!

On the edge

You know when your on the precipice ...and you really don't want to fall over it...well that's me and my UC on my 6 months anniversary of using Imuran.  I was actually hoping I would be symptom free by now, but maybe that just me asking for the world again.

So here's the state of affairs after 6 months on Imuran

• Months 1 to3 - slowly the tables started to take affect and I was able to get off the pred after 2 long years being on it and loosing half my hair
• Months 4 and 5 - looked like things were on the up...no symptoms
• Month 6 - Some bleeding, occasional urgency - bugger...was hoping that all had gone

The good news is that it's not gotten any worse as I would have expected by now, so I'm hoping the meds are sort-off holding it in check and it's my current stress levels and lack of sleep causing me to slightly digress.

So what to do now...we'll I'm going to do a version of the SCD diet again to see if 2 things will happen.  The first being a get rid of the blood and the second is to loose some weight.  Now that I've been better gut wise, that means weight gain and with Christmas and summer just around the corner, I need to loose some weight within the next 6 weeks or I'm going to be disappointed with my self and my lack of discipline chocolate and chip wise!

I've got an appointment with my GI on Wednesday and I'm really hoping she'll not bring up the dreaded colonoscopy just yet...but I know it's coming soon...it's only a matter of time now.  I know I shouldn't put it off and yes, she really does need to have a look there soon...but please just don't ask me to do it just yet as I've already decided I can't say no and offer up a lame excuse.

Hope you guys are all hanging in there and life isn't too bad.  If we can't beat the bugger, let's not let it pull us down! 

FINALLY!!!!

Yep, it's been a while since I posted, but with work and the kids and coming home, it's been busy busy busy.

What a few months! Landed a great job in a great team. Kids doing well back in school. House back to nearly normal. Just UC to deal with.

On the UC side of things, I can't believe it. I think I'm finally back into remission after a long 2 years on Pred. My saviour (with some side affects) is Imuran. I'll risk the side affects if my life is back to semi normal. You still get the odd "OMG toilet run" moment, but that for me seems to be down to eating food that does not agree with me...a bit of IBS I think.

I was reflecting with my husband my UC life and he reminded me of the time just before UC when I went through a very angry period. Looking back I wonder if this was part of the UC. Did something change chemically in my body with kicked off a chain of events that lead to UC 2 years later? There were various UC initial symptoms from about a year before the big UC attack.

Anyway, if any of you can remember a very angry period in your life before the onset of UC, please can you let me know. I'm going to talk to my GI next week about this to see if she has heard it from anyone else who had an initial angry stage before UC onset.

We all go through so many stages with UC. I'm just happy I made it back to this stage no matter how long it lasts! I need this time just to feel semi normal again and no matter what happens next I know I can cope!

A day off work and hitting hippy country :D

Hi all - I'm back to reality with a bump, but life is good in Brisbane. Got a job fairly quickly (too quickly for my liking really!!!) and normality reigns again.

Winter here is brilliant with average day time temps of 20C. For most 'Brits' here it's the best time of the year. Lovely clear blue skies and dry.

So today we took a drive to Byron Beach as I have 2 days off work and the kids are on holiday. Saw no whales heading north to the warmer waters, but great day out. Played pétanque (french boules) on the beach and took a trip up to the light-house.

Byron Beach is the most easterly point of Australia. The longboarders arrived there in the 1960s. This was the beginning of Byron Bay as a tourist destination, and by 1973, when the Aquarius Festival was held in Nimbin, its reputation as a hippy, happy, alternative town was established. It still has some of that charm, but as with everything, the 'rich' folks have also discovered it and things have moved on from being laid back to a more commercial. Still a nice place to visit though.

UC wise I'm now on Imuran. Yep there's side effects and it can take 3-6 months to fully work. I'm 2 months in and seeing some improvement, but we'll wait and see if remission is achieved once the preds are stopped for good in a few week. Tried to get off them 2 weeks back and ended up in a bit of trouble so I restarted them and I'm not down to 10mg a day.

I'll post again within the next 2 months as by then I should know if this latest drug is working. Fingers crossed again.

Nicotine gum - a possible lead to remission?

So I used to be a smoker way back in 2000 and quit to start trying for a baby. Quitting was relatively easy for me as I fell pregnant very quickly, so restarting smoking was not an option.

I wasn't what you'd call a heavy smoker, but would have between 5 - 10, 1mg cigarettes a day with 10 being a night on the town fuelled with beer and champagne. (Oh for those days pre kids and a mortgage...oops I digress)

All up I'd say it really took me about 7 years to really get over the addition. Often when people smoked I'd want one, but I never allowed myself to give me, so me starting nicorette gum to try to get my UC into remission comes as a bit of a surprise and was not a decision I took lightly.

I actually read a couple of articles last year about the possible benefits of nicotine and Ulcerative Colitis, but the thought of restarting smoking was not something I was willing to consider.

The nicotine thing sat in the back burner of my mind until this week, when after a "little accident" on my first week back to work, the sudden idea of giving nicorette gum a go came to me.

So on Friday 6th May, I started my trial with just 1 piece of 4mg gum. From then, my daily dosage will then be 2 x 4mg nicotine gum (once about 1 hr after breakfast and once in the afternoon) for the next 3 weeks. After that I'm not sure. I do intend to reduce the mg as I do release this can not be used for ongoing maintenance without varies other side affects kicking in.

The scary thing is that this might actually work. In just over 2 days I have seen a change, but be warned I have seen changes before with other things I have tried, only to see them fail within a week. This one I am a bit more confident about, but we'll see....I'm for ever the optimistic pessimist.

I'm not advocating anyone use nicorette gum to see if they can get their UC under control, I just want to share what I am doing. It may or may not help me in the longer time to gain remission, but I have to give it a go just in case. I'll keep you posted. In the meantime, please read the health warning below as you need to be aware of possible side effects if you do decide to try it.

If anyone has tried this approach whether successful or not, please let me know.

P.S. Just rejoined the workforce this week after a 2 year sabbatical....now that was a hard week. Oh to win the lottery!

How do I use NICORETTE^® Gum?

As per - http://www.nicorette.com.au/product-range/gum/

NICORETTE® Gum is not an ordinary gum so you should not chew it constantly. To make sure you get the most from your NICORETTE® Gum, use the NICORETTE®chewing technique.

Health effects of nicotine

As per Wiki - http://en.wikipedia.org/wiki/Nicotine_gum

Nicotine is a vasoconstrictor; it constricts arteries, making it harder for the heart to pump blood through the body. Repeated nicotine exposure contributes to accelerated coronary artery disease, acute cardiac ischemic events, andhypertension Additionally, studies have shown that nicotine exposure contributes to stroke, peptic ulcer disease, and oesophageal reflux. Further, nicotine may cause wounds to heal more slowly and may be associated with reproductive toxicity. Moreover, nicotine can cause the body to release its stores of fat and cholesterol into the blood.

Nicotine replacement therapies, such as nicotine gum, that were used for long periods of time may be associated with an increased risk of contracting oral cancer among people who have a specific gene mutation in their mouth, according to a study done at University of London.

Muscle control

Two unpleasant symptoms which affect some new users, and existing users who make excessive use of nicotine gum, are hiccups and a perceived constriction of the throat muscles, as accidental swallowing of saliva containing high amounts of nicotine may cause irritation.

Gum disease

Prolonged nicotine chewing gum use may also cause gum disease. Nicotine constricts blood vessels, including those of the gums, which has led to speculation that long-term use of nicotine gum may contribute to risk for gum disease. However, one clinical study has found no connection between 15 weeks of nicotine gum use and oral health.

I'm home

Well, it's been a long 2 years. I've had my ups and I've had my downs in France, especially trying to deal with Ulcerative Colitis, but I've survived and now I'm back home in Australia.

So medicine wise I'm down to 15mg Pred. I'm trying to get it down as low as possible with loosing bowel control. There's still bleeding, not a lot, just a tiny bit. This time around I never really got totally rid of the bleeding, except when I was on 50mg. I'm not keen to go up that high for a while at least anyway.

I've been back in Oz for 2 weeks now, so I'm hoping that the stress of the move and everything else will start to lesson as life get back to normal. This in turn I hope will make my bowel start to behave a bit better. Time will tell. Fingers crossed (again!!!).

It's funny, being back home. It's like 2 years in France never happened. You know when you come back from holiday, sometimes it hard to believe that you were ever away...like a dream...very strange. I never thought that 2 years overseas would feel like that. I also can't believe that it went by that fast.

Don't hold your breath though if you think that now I'm home I'll stop whinging about UC. If anything I might get worse as I know the doctors and specialist know exactly what I'm saying :D