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

OMG!!! ...now hair loss

So this is something that I have just noticed...you may remember form previous posts that way back on Sept 09 when I went for my first French haircut, that she basically cut my hair a lot shorter than I'm used to an since then I have been trying to grow my hair back to the longer length it was. For the past 18 months though my hair has been really dry and I put that down to the climate here. Because of that I got it regularly trimmed and keep it in a short bob up until December 2010 when I decided it was time to grown it longer again in readiness for going home where it often in a ponytail due to the heat and humidity in summer.

Well, imagine my surprise a few weeks ago when I tried to put it into a ponytail and finally realised that I have probably lost over 1/3 of my hair. I always had loads of the stuff, to the point were I used to ask the hairdresser to thin it out. I have no idea exactly when this started happening and have only just come across an article last night which seems to suggest predisolne is the cause. Didn't know of that little side effect!!

I restarted Pred again last December, but that also coincided with a trip to the hairdressers that wrecked a heap of hair due to over processing, so I didn't make the connection with predisolne until now. It's been over 3 months and the hair I had expected to grow back hasn't.

So a little research last night lead me to discover this...some people lost about 1/3 of their hair over the course of 6 weeks while tapering down on pred. When their hair grew back, it grew back curly instead of straight and the texture was different.

OMG!!!

Well, I'm tapering down...although I severely doubt I'll get off Pred as I'm bleeding already at 30mg and have been since I tried to drop to 40mg. Once I get back to Australia I have an appointment with my GI, but that isn't until 10th May. A long wait time. Oh well, what can you do?

Another thing I've read is that in general medicines can affect hair loss. Maybe it is Pred, maybe it's not, but I'm missing a heap of hair!!! .... hopefully it will grow back soon...we're leaving here on Friday, so hopefully by 7.30pm on Saturday night, I'll be about to arrive back on home soil :D ....maybe I'll even get back into remission after 2 years of hell...well a girl can dream :D

Ever started an e-mail with "Bullshit"?

Ever started an e-mail with "Bullshit"? ... well I hadn't until the other day:D

So here's what happened.... I put an onine order in for 5 magnet fridge magnets...just 12cm x 4cm..plastic..not heavy...you get the gist? They came to a total of $34.75 (USA dollars) and along with that I paid an additional $12 (USA dollars) for postage to France. That's a fair enough postal cost I reckon. I paid for this on a debit card and only put enough money onto the account to cover costs. I do payments this way when I haven't done business before with overseas companies I'm ordering from. Previously I've had to cancel credit cards as funds have been deducted without my approval and for me this is the easiest way to handle it now.

So here's the e-mail I got 2 weeks after I put in my order...

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Dear Paula,
Thank you for your order. It is ready to ship, but because of the size and weight, the cost to ship your order is $40.00 through Fed Ex or $35.54 through USPS. You have paid $12.00. Please let me know how you would like us to ship your order and if the additional amount is okay to add to your credit card.
Thanks,

Sommer Brant
Customer Service


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HHMMMMMM...well that wasn't the actual words I thought ....and here's my reply

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To: Sales
Subject: RE: New Order # 5200002165


BULLSHIT!
No I am not willing to pay extra when you advertise that for my cost of order the shipping cost is $12.00. Please explain how you think you have the right to charge me more! I have a copy of your website shipping costs advertising the price. Refund my money immediately as this is false advertising before I take further action!!



Paula

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In the mean time, I'd contacted my debit card company and asked them what I could do in situations like this and if there was any way of getting my money back, to which they replied yes and started the process for me. I did however get a reply back from the company, with an apology, but realistically, the damage was done.

As you can see from the e-mail below, they were able to reduce the size of the packaging. But the point is why couldn't they have done that in the beginning and saved all this hassle. Why would I pay more for postage than the actual cost of the contents?

I cancelled the order and got all my money back, including all bank charges.

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From: Dawn
Subject: New Order # 5200002165

Paula,
I apologize that you were contacted about paying more money for shipping. You are correct, our website does not say anything about charging more money for shipping. All shipping costs are based on the size and weight of the box. I took your package back to our shipping department and asked them to re-package it in a smaller box so it would be less expensive to ship. We were able to reduce it to about half the size of the original box. If you’d like to continue with your order at no additional shipping charge please let me know and we will ship it today via USPS otherwise we will cancel and refund your order.

Warm Regards,
Dawn
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Oh well, all's well that ends well and the debit card is the way to go.

What a month

Nearly time to go home :D - I'm so excited :D - 1 car and 1 house gone, just one more car to go next week. In less than 15 days I'll be back home in my own house in my own little suburb and life might get back to "normal" again. Well, as "normal" is to me :D

Like I said before (many, many times)...life in France has had a few downs, but there has been ups along the way. If only I hadn't have had UC to deal with...but heck...life might have been a bit boring then and I might never have gotten to appreciate certain things in life.

Do you ever wonder why were were given this crappy disease to cope with? Sometimes I reckon it's to make me a better person, but bloody hell, was I really that bad a person to begin with? Jez, I'd never want to inflict this disease on anyone, no matter how much I hated them! Hate isn't probably the right term...but you know what I mean!

But, without the UC, I would never have agreed to come to France ... without the UC, I would never have met some of the lovely people that I had ... without the UC, I would never have gotten to learn to drive like this mental French people in Provence, without the UC, I would never have learn't to curse in another language and without the UC, I would never have had such much fun there in the 'good' months. So yeah, I have a lot to be grateful to UC for. I still want rid of this damn disease though!! Can someone please "beam me down" a cure please!!

Spare a thought for someone else

I've been thinking all this week about all those poor people in Japan. My life is absolute bliss compared to the hell some of those people are going through right now.

The sad thing is that they have years of this ahead of them to deal those. All those villages along the coasts just wiped out and thousands of people died. How do the ones left recover from this?

So spare a thought for everyone worse off than you...because even with our crappy disease...we're a hell of a lot better off.

How do you know when it's time

How do you know when it's time to go get the op?

So I asked my neighbour this question last month and the answer was, "You just know". Well, I don't know.

How much pain do I need to be in? Should I wait until the doctor tells me its time? Should I wait for the first signs of cancer?

I'm hoping that I never have to have this operation, but reality is that I will at some stage. I want the miracle!! I don't want the op.

I was reading a story the other day about Freddie Mercury and it stated that is only Freddie could have survived another year, the advances in medicine and especially in the treatment of HIV and AIDS could have saved him.

I know UC is not on the same level as Aids, but I keep hoping that if I can survive with colon intact for a bit longer, then the medical world might actually have the break through that we need.

2 years on

I've learnt a lot about myself in 2 years ... some of which I'll never admit to publicly neither, but at least I know. I never was able to relax here in France ... too many things where against me ... but heck I did have fun when I was on the preds.

As long as I'm safe in my house in the flare-ups times then friends were always welcome to come over. We head home for a quick "sort the house out" trip in 2 weeks and life is certainly on the up. I got a doctor here to give me all the meds I wanted. Believe me I was truly surprised...I must of had that look on my face that scares the crap out of people when I get forceful. Doctors 0 - Paula 1 on this occasion :D ...

I only came out of remission when this whole trip started..so maybe stress is my trigger...let's see how I'm going come April when I'm home for good.

2 years is along time away from home...especially my home town of Brisbane...it got a bit wet last week, but in true Aussie spirit, Queenslanders don't stay down for long ... I wish I was at home to help out all those poor families though...so much loss and destruction.

Next time you are feeling down, just think to yourself, I'm still here and kicking and can do something about it.