Sydney Australia

[Leafy2]

since ive really had no luck finding anyone from sydney, ive had to make this desperate bid.


I really would prefer my mother talk to someone else with this, and basically get the idea of whats really wrong. Even though Im turning 20 at the end of april, she still drives me up the wall.

Some people dont know how painful it is to live with this and she thinks its a stomach bug.

if anyone at all here is from Sydney, please PM me.

 

[kello82]

http://www.acca.net.au/

hey here is a link for the Australian Crohn's and Colitis association. i dont know anything about it but i imagine it is much like the CCFA here in the US, there are local chapters and meetings that take place in your area. you will probably be able to find people in your area easier that way

 

[Leafy2]

yeah im aware of that, but still well......... my views and my treatment is not very accepted here in AUS.

lets just say its ''French Connection United Kingdom upped!''


wish I was in canada... at least there I would be normal.


just want to speak to other Aussies online which treatments they have had, which work, and which dont.

Prend sounds really messed up, osteoporoisis???? I mean jesus christ there has to be something on prescription that doesnt do that!

 

[mRae85]

I know how you feel with trying to find a safer treatment, sorry but all the meds out there have a down side. Try not to read them and just take them... but the pred is evil. Anything else, give it a go, but try to avoid pred unless you can manage to take it at the exact same time of day everyday. The osteporisis would probably be a walk in the park compared to the other more normal reactions I seem to have with Prednisone! I already have bone and muscle aches and pains so.... but the rash and burning skin and sharp pains in my bones (litterally the feel like they are being cracked) those "normal" things I can live without. I am tapering on it now, down to 20mgs, and it is my goal in life to make sure I am never on it again and tell everyone I know how evil it is!

Other meds out there have warnings on how the med can cause cancer, I made a thread on that in here because before I heard what others had to say it had me REALLY scared and I felt really hopeless as to what I should take. I still don't like the idea of taking the meds, but I know without them I wont get any better either. The chances of all the bad things are really low, untill there is something out there that is 100% safe we just have to weigh the pro's and con's.

 

[jed]

I seriously think pred is one of the best drugs ever, it has stopped me flaring in soooooo long! Sure it has its side effects, but so does everything. Damn, smoking gives us cancer (and theres plenty of people on here that smoke), yet we still do that. Alcohol can screw our livers, smoking weed causes empashema.

Just keep having plenty of calcium to help your bones, get some exercise. Start of easy and work your way into it. Light weights etc etc, it’s the same thing they’d tell anyone with oesto. You can help overcome the side effects of pred, don’t hate it to much

What’s your entire drug regime been for Crohns been leafy?

 

[alexfell]

My son started on Pred before Cmas after he was first told this was what he probably had. It worked wonders for him. He was on 150mg a day I think & he put on weight in the first week. It stopped again but 5 kilos ( 11 pounds) made a big difference to how he looked. After an official diagnosis in January he was told to decrease Pred & take Solafalk. This hasnt worked at all for him & he's lost weight again . Now he's starting to take Imuran so we hope thats gonna work!

Leafy...sent u a PM ...we are in Sydney.

 

[Leafy2]

weed causes empashema.

not if you vapourise it. Any smoking is bad for you!

my medicine is in the lounge.... have a read of the data and enjoy its there so no kids can read it.

 

[Leafy2]

Rae, problem being is that I know the side effects........ and my family history dictates that if I take them I will get cancer 100%.

both sides of my family have had bowel cancer, grandfather had crohns which turned into bowel cancer from the meds. Prend screwed me up when I was a kid with asthma... sent me absolutely psycho.


So far Ill remain good friends with mary jane as she has been very good to me and has allowed me to eat, sleep and live a normal life. I hope I never get divorced from her, last time she was 'gone' I nearly wound up in hospital.... shes been away now for 4 days and Im experiencing pretty nasty effects.

I hear she is getting me a vaporizer for my birthday!

but never less its a risky relationship, and can land me in trouble, but to feel like a normal person once again.... shes worth it.

 

[danman]

Leafy, did the doctors actually tell you your grandfathers cancer was caused by Crohn's meds? What meds was he on?
Was there a chance it was caused by Crohn's itself. we are at more risk than "Normal People" hence why we get so many colonoscopies.

Also, if your grandfather had Crohn's for a long time, the med's he would have been given years ago were next to useless. It would have meant his inflammation would not have been treated properly.

As for Pred, I've been taking Pred for over 30 years. 20 years for Crohn's and 10 years before that for asthma. I've always take calcium supplements when I'm on them and had a bone density test done 6 months ago and it came out all clear.

Yes there are risks, but the benefits far outweigh the small risks.

 

[My Butt Hurts]

... but the pred is evil. Anything else, give it a go, but try to avoid pred unless ...

I think that you need to be really careful with a statement like this.
Pred can be an amazing drug. It has helped to calm my flares when nothing else would. If I avoided it at all costs, I don't know where I'd be right now. Last summer I was "going" 12 times a day, and the pred helped to change that until my new meds kicked in. Also - I believe the pred HELPED the new meds work. It got the flare calmed enough for them to work well.
Pred gives me almost no side effects, and the ones I get from it I actually like. If someone told me to avoid it at all costs, I think that would be wrong of them to do so.
Of course it's fine to say that YOU would avoid it at all costs.

 

[danman]

That's been my experiance with Pred too MBH.

I've never really had any side effects that I know of.

I know the risks, but as I said before, I've taken it for the past 30 years, and my bone density test was all clear 6 months ago.

Evil is not the word I'd use to describe it.

 

[Leafy2]

pred ****** my head up when I was 13, I took it for asthma.... I avoid it at all costs.

 

[mommy1st]

pred ****** my head up when I was 13, I took it for asthma.... I avoid it at all costs.

How did pred screw up your head? Have you tried it since you were 13? Maybe now that you're older you would be able to handle it better now.

 

[danman]

I was taking it from the age of 6.

My head was/is fine.

 

[kello82]

i think just everyones comments here shows that everyone WILL react differently.

in my opinion, you should not completely avoid nor have your heart set on a certain drug based solely on another persons experience with it.
you must weigh the risks and benefits, and if you and your doctor decide its worth a try, then you will learn from that experience whether the drug agrees with you or it doesnt, and be able to apply this knowledge to choices regarding it in the future.

personally i have a love/hate relationship with the pred.
it immediately calms my inflammation, makes me gain weight and overall makes me healthier from a crohns standpoint.
BUT the withdrawal from it makes me feel just as terrible as before i took it, i get an awful moonface, and it damaged my bones pretty bad.

but this is just MY experience. only from your own experience can you make judgemnts about a drug and no one is wrong for their personal judgment. and i would not tell someone else to never take it just because of what i have been through on it.

just my 2 cents here....

 

[RafHam]

I agree with jed and others re pred. Despite all the issues I've had with side-effects, it's been an absolute godsend. I don't know where I'd be without it. It's great knowing that I have something in my back pocket that will work almost instantly if the other meds fail. It's just about what works for you and what you're comfortable with.

 

[Jeff D.]

Leafy: You say that your grandfather got cancer from Crohn's meds but did anyone say that as 100%. If your grandfather has cancer it is a higher risk for you but if you decide to eat correctly then you can drastically decrease these chances. Fiber has been scientifically known to keep intestinal and stomach cancers at bay. If you are unable to take fiber then your chances of cancer increase.

People have a very low risk of cancer when we are born. Having Crohn's raises the chances by an incredibly small amount and the same happens with Crohn's drugs. If you read on a label that a drug may cause cancer it is because they started by giving rats the drugs and if one of them gets cancer, it doesn't matter what caused the cancer, they must put it on their label.

Cancer has been considered to be something preventable if you eat the correct things. The more bad foods you put in yourself the worse off you will be.

I wish you the best and whatever treatment you believe works for you is fine, but if you are not getting relief then go see your doctor and get something that works for you. It may not be something that happens right away and you may need to try several things but once you find the right med you will be good.

Good luck

 

[D Bergy]

What kind of treatment options are you looking for? Something to bring down a flare, or a more permanent treatment.

If you have a strong family history of Cancer, you could try Low Dose Naltrexone. It is a Cancer preventative as well as a Crohn's treatment. I assume your are not treating with any meds currently, but I do not know your history.

I must have missed your introduction. I will go look for it.

Dan