Disappointed

 

bit the bullet and went to locum Gastro Specialist as running out of entocort ....lovely man BUT:

- LDN not an option in NZ

- rifaximin not an option in NZ

really, really disappointed - gutted even

he says I need to be back on an immune suppressant now the risk of sepsis is reduced and wants to try methexotrate next (comments welcome?)

he supports continuing FODMAP which does seem to work for me YAY 

apparently stress of living in earthquake central AKA Christchurch, NZ (7341 since sept 2010 - I kid you not) has not helped my crohns so no suprises there. Don't remember a night when I haven't been woken by the house shaking and am just SO tired!

not very often I feel beaten but today I am struggling <SIGH>

I had been SO excited about LDN - wonder if I could get it in OZ?

Night night from NZ

*Gave your posr a title*

Post Edited By Moderator (Nanners) : 8/2/2011 7:43:22 AM (GMT-6)

Kiwi...hoping you get a good nights rest soon.  I can't speak to the meds you mention, but I am wishing some peace and rest.

Hi kiwi12, I am so sorry that your doctor answered no. BUT there is an option. You can order your naltrexone in 50 mg capsules, and dilute in in 50 ml boiled water (dilute it after the water has been cold again). If you register in a yahoo group called LDNandIBD, you will get help to get your LDN. You will also get support and proper advice from people that have done this and have years of experience in using LDN. Please, do try LDN before you consider Metotrexate. LDN gives you no serious side effects, if you get any they are very mild, and just initially, lasting a week or so. (As too much energy during falling asleep, or too much energy in the middle of the night) There is always mild medicines for this, like melatonin. Or any mild sleep aid. Sleep problems occurs in 20 % for the first week. Or every time you're increasing the dose. Please, don't give up. // BEE

Hi Lesley,

I'm really sorry you're having such a tough time there, both with your bod and the earthquakes.

I am wondering if methotrexate is the best option for you, given how things are in Christchurch at the moment. If he's wanting to give you injections, that is going to require a certain degree of infrastructure to be in place: at least, it will if your system was anything like ours. You'll need reliable electricity for refrigeration, and probably a district nurse to be available, on schedule, to give the drug. You don't want to be worrying about blackouts, or roads being blocked, or anything like that.

Even though I had some improvement in my symptoms on mtx, it did come at a price, in that I tended to be very weary and sluggish for days after each dose. I found I needed to structure my life around my mtx regime, and make sure all my major commitments were accomplished before I took / injected each dose, because I wasn't sure how I was going to be for days afterwards. Once again, you already have a pretty powerful natural force governing your life there, so I'm wondering how well you'll cope with the additional pressures that *may* come with a methotrexate lifestyle. Of course, it's possible you'll have no side effects at all, and my experiences were just unusual ones, but I do think it's something to consider before you commit to this new medication regime.

Is a different immunosuprressant available to you; something like Imuran, for instance? At least that wouldn't require refrigeration...

Thinking of you; hang in there,

Ivy.

Thanks Gail for giving my thread a title! The lack of sleep really is catching up on me :P I honestly don't know how you stay so positive given all you are dealing with - your kindness is over whelming!

Thanks everyone else for you support and encouragement - words really can't describe how much I appreciate it.

I have an appointment with my new GP tomorrow so fingers crossed she understands crohns.

Think I will try and hold off going back to the specialist for as long as I can while I do some more research - appreciate the suggestions for LDN and agree with Ivy that given our local infrastructure issues it is not a great time to be starting mxt, or any other drug for that matter. (Yes Gail I KNOW I need to get back on something but what???)

I am SO looking for an excuse to jump the ditch so are you SURE LDN is not available in OZ Ivy <LOL> do I sound desperate to leave earthquake central :P

big hugs and positive vibes to you all
and again thank you

Lesley in NZ

bless you Ivy for all the good suggestions. It has long been a hankering of mine to live on the sunshine coast so I was REALLY hoping the earthquake(s) would convince my whole family it was a REALLY good idea especially as my daughter and us have houses that have been labelled 'red zone' which basically means we have 9 months to accept a payout at government valuation and get out. GV isn't going to cover relocating/rebuilding so we are going to have to help our daughter out financially which is going to put a strain on us esp if my crohns flares and my work becomes intermittant. If these aren't signs to emmigate to Oz I don't know what are <LOL>

Half joking of course as I know the grass is always greener etc etc - think I am just VERY tired ;P

My hubby travels across a lot on business and once a year I try and tag along (health permitting) - I was over the cold winters before the ground starting shaking so it wouldn't take much convincing for me to leave NZ for good. Hoping for a week in Burleigh Heads in October which is almost as good so will hang out for that.

I loved your christchurch memories and wonder what the funky Maori Men are doing now! Sadly the catherdral is a gonner but I am sure Mt Cook Pavlovas would still impress.

Went to Auckland for a weekend break and isited the annual food show where there was a hot chilli sauce promoted with the tag ' Try a Hot Samoan' with samples being proffered by rather lovely samoan gents - got lots of giggles but was too scared at the effect on my tummy to try it :)

hope you are feeling better (proportionally anyway) today

hugs
Lesley

ohno facing antartica sounds as bad a living in earthquake central ;P

I have a hard time understanding the NZ health system too but with rgards to drugs they are controlled by a central government agency - Pharmac which manages NZs Pharmaceutical Schedule set each year to a budget and if the drug you want is not on the schedule basically it can't come into NZ. Needless to say anything a bit off centre or expensive or too cheap is not available.

I had a few days in Melbourne recently - was quite a bit colder than I expected and it has an earthquake while we were there - how weird was that!

Hope you have a good weekend - I am going to get some sunshine and do NOTHING ahhhhhhhh

hugs
Lesley

spent a few days in Meb then the weekend in Apollo Bay - very nice but suspect nicer in summer - hubby was on a work trip so we used some airpoints for me to tag along :)

sorry to hear about the no LDN permitted

Thanks Roni - new clinic I shall file away for future reference if I end up in Sydney although I couldn't see anything about LDN on their site. Looks a bit like the one I go to here in NZ - I am very lucky with that side of things just frustrated at the obsession with immune suppressing drugs and control our Pharmac has over drugs coming in to NZ <grr> Funny how Canada sounds exotic and cool to us down this end of the word :)

No swimming Ivy - not suicidal yet <grin> but I was lucky to get to the Vienna Exhibition at the Melbourne Art Gallery which was awesome as I got really close to some gorgeous art and craft from the turn of the century - love Klimt and all that periods glitzy glam. Just mooched at Appollo Bay. Great Ocean Road and the 12 apostles were stunning. Was getting over the flu so happy to be driven and just enjoy the fabulous scenery - beautiful part of the world :)