Crohn's Disease Forum » Your Story » New to the forum, Hi from NZ!


08-23-2009, 07:24 AM   #1
gibby
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New to the forum, Hi from NZ!

Hey guys,
Thought i would say hi to you all, I've been a lovely sufferer of UC for 18 years now, was diagnosed when i was 8 years old.

Been on Pentasa since diagnosed, and was a terrible teen going thru some serious denial and most of those years ended up with the sewer system having lots of pentasa treatment as most of my meds went down the sink, unless i was having pretty nasty flares in which case i would start taking them and often end up on oral or IV prednisolone depending how long i had left it for.

Got to around 18 when i was really sick overseas on a trip to Italy, spent most of it in the hotel losing amazing amounts of blood to the toilet, and when i stepped off of the plane in Glasgow instead of my parents taking me home i stopped off in the hospital, where i stayed for a month where i fought for weeks to try and keep my large bowel. Was on the theatre list more than once and am obviously a persuasive person because talked my gastro consultant out of operating on me several times. Eventually after 1 month of IV steroids and several weeks on oral pred i recovered. Not enough for my poor wee tum, i am now left with scarring over 2 thirds of the large bowel, and for the next two years after having such a fright i took my meds religously, i ended up having to start on Azathioprine because i was having too many courses of steroids.

Since then i have gradually improved, my flares are now limited to two or three times a year and most of the time i can treat them with predfoam enema stuff, occasionally need to go on prednisolone.

I am originally from Scotland, and have a fantastic gastro team there who i have been seeing since i was 14 and started to move across to the adult health team. My consultant is brilliant and i have such a good relationship with him, when i start to feel a flare coming on i call his secretary and he gets back to me within the day with a plan. He listens to me and i have the greatest respect for him since he spared taking out my bowel all those years ago! He still threatens it from time to time about eventually having an ileo-anal pouch fashioned but only when i have a couple of flares close together.

I work as a nurse and decided to move to New Zealand for a year to work in a NICU there and see the country. I am 8 months into the year and loving it, the people are fab and loving work here, not that different to Scotland but its cool. Unfortunately i ended up in the NZ health care system a couple weeks ago, had what i thought was a mild flare up, a slight increased freq going to the loo and losing a bit of blood, so thought some predfoam would clear it up, but my GP sent me straight to emergency to see the gastro team, there i had a sigmoidoscopy and realised that instead of my usual 10cm affected inflammation i was actually ulcerated and inflammed to more than 40cm of bowel, which floored me a bit.

The consultant wanted to change my pentasa over to asacol, and start a new steroid programme on me, to which i actually refused, as i didnt want to mess around with meds i had been on for years and am semi stable, i knew if i recovered i would have at least a few months before i got sick again, and would be home by that point in aa health care system who knew me and my disease and who i trusted! Plus didnt want to spend the rest of my trip in hospital and on the loo if it went wrong! So got some steriods to improve things and they upped my pentasa from 6 to 8 tabs daily and on my way i went.

Unfortunately or fortunately, however i look at it, they took bloods for 6TGN levels (they dont do this in the UK as it is too expensive for the NHS!) which shows my levels are sky high, this is the ones that determine how Azathioprine is being used by the body, and high levels mean you are getting toxic from it, and its damaging your bone marrow. I have just had a repeat to confirm, then its likely that they will take me off it or substantially reduce it, which scares ,me as it has been the only thing to keep me relatively stable. so it has put a bit of a dampener on things at the moment.

Its great i can moan to people who know where i am coming from cos my family only nod then change subjects!PLus reading other stories is really inspiring.So i found you guys while researching other stuff and thought i would say hi!

HI!
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Yvonne

Everything happens for a reason, no matter how crap it seems,it shapes you for better things in life. Keep smiling!
Dx UC 1991 when i was 8 years old:

Hospitalised for 2 weeks in July 2011 with burst appendix and peritonitis, surgery, IV antibiotics and a long recovery...

Lovely Meds...
*8x500mg Pentasa (Mesalazine)
*3x50mg Imuran (Azathioprine)
*Mebeverine/Colofac PRN for pain
*and B12 injections every 3 months
*Asacol PR when flaring +/- prednisolone

08-23-2009, 03:58 PM   #2
shazamataz
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Welcome fellow New Zealander (even if you are only temporary)!

Not much fun having a flare when you are on a working holiday. I hope things settle down for you soon.

I have found the medical system here quite difficult thus far (I am only 2 months in to my Crohns diagnosis), so lucky you are a nurse and will be able to ask all the right questions and such.

This forum is really supportive and helpful, so welcome and enjoy

Shaz from Dunedin
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08-23-2009, 04:13 PM   #3
Ezio
 
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Location: milan, Italy
welcome!
08-23-2009, 07:57 PM   #4
JillianB82
 
Welcome to the forum!!! We're glad you found us! Thanks for sharing your story!
08-24-2009, 08:55 AM   #5
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Welcome, Gibby!

I have Colitis, but doc isn't sure what kind it is yet (Ulcerative or Crohn's). It's an uphill battle.

I'm happy you've found us! Feel free to moan and groan all you want!
08-24-2009, 11:44 PM   #6
gibby
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Hey Ris,
yeah they hummed and ahhed for ages before diagnosing me with UC but for a while i was a crohnie, and on occasions my GI still scratches his head with thoughts about going back to the crohns diagnosis, but as long as the treatment is much the same i dont mind. I have taken to telling people i know that i have crohns as its more well known that UC and i dont have to explain it. I reckon i still am in the middle of both diagnoses!
Ah well, time will tell i suppose, even tho its been ages already!
hope to catch up soon
Gibbx
08-24-2009, 11:44 PM   #7
gibby
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Oh and Shaz i am proper adopting your "never trust a fart" mantra....so true!
08-24-2009, 11:48 PM   #8
misscris
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gibby. Glad to have you here.
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Crohns Diagnosis: March 2009
Resection and Abcess March 2009

W.C.C.....Charter member
08-24-2009, 11:50 PM   #9
shazamataz
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Well, one learns that farts cannot be trusted!

Actually, I haven't really had that problem to any great extent apart from when doing prep for hospital tests. You can DEINATELY never trust a fart when drinking that stuff - I learned that the hard way first time and was pleased to be home on my own at the time.

I think I may ge a T-shirt printed, cos the phrase makes me laugh
08-25-2009, 01:44 AM   #10
gibby
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Hee hee yeah the prep is SO not cool...every time i get it its something different, so have to figure out another weird and wonderful way of disguising the taste....my past sucess stories have been ice cold ribena, neat cordial, or fresh orange juice...and always super concentrated!

Just reading your list of meds....what on earth is slippery elm?? sounds mighty scary..

Gibby x
08-25-2009, 02:37 AM   #11
shazamataz
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Hi again

Slippery Elm is a natual remedy I was recommended. It is supposed to calm inflammation. It's basically powdered tree and tastes foul. In fact, it is really disgusting, but no harm I guess?!

I really want to try to do this as naturally as possible (with as few synthetic chemicals as I can manage) so have been doing a lot of research.

There's all sorts of things you can try - like the probiotics and such.

Of course I am on Pred at present because I kinda didn't have much choice when I was in hospital!

So, hard to know if the natural remedies are working but thought I may as well get into the habit before the Pred tapers off.

Things are all good. I have some pain occasionally, but that seems to be paired with me being constipated, and I guess that's the large bowel having an issue, even though the Crohns is only in my ileum (who knows why that happens??!!).

Pooping like clockwork most of the time and no D (not that I've had that for a few months anyway). So, could it be the pred or the other stuff? we shall wait and see

Gotta try these things eh?

shaz
08-25-2009, 03:25 AM   #12
gibby
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Its my large bowel which is affected, i'm left with only a third fully functional, the other two thirds are scarred to hell. i get alot of cramps and kinda increased frequency but never pure D, just a bit more mobile than usual! but then i get constipated afterwards, and my consultant said thats when the poop kinda sticks to the healthy bit and doesnt want to move down towards the bad bit....so means i dont really have much action for days and days! Then back to the normals then hit the more slippery mobile poop again....fun times...


But powdered tree?? Nice.....not selling it to me but can totally see where you are coming from..when you are shoving more than 11 pills daily then you kinda dont wanna put anything else nasty in to your body so natural seems the way to go....was gonna try the aloe vera gel that was all the rage a wee while ago but never got round to it...


Mmmm powdered tree....
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