G'day from australia

[burnside97]

g'day from australia

Hi there, Im a 23 year old guy from australia. I have a very active lifestyle which mainly involves a huge amount of cycling cycling... and cycling! It really is the main part of my enjoyment in life aswell as the career i have chosen for myself.

But for close on 4 years now i have been suffering from painful, tiring and generally awfull symptoms of crohns.
almost on a daily basis i have many trips to the toilet aswell as a lot of bleeeding and obviously this really concerns me.
My initial diagnosis about 18 months ago was actually ulcerative colitis and i was medicated accordingly.Through the many specialist appointments in the first twelve months my medication increased and increased with no real improvment of my symptoms. Maybe the ocassional improvement here or there but nothing i could really call a great success ya know?
As of about 5 months ago now i was referred to my specialists collegue and she immediatly changed the diagnosis to crohnswith out hesitation.
After seeing my new specialist she has now pretty much maxed my dosages on Prednisone, salofalk granules and imuran.
Ive been on this level now for about 4 months and i can say that there is no real improvment in my symptoms.
Honestly my main concern really is whats next? I know there is other medications like biologicals and also surgery, but the idea of surgery kinda scares me. So far the options havnt been discussed with my specialist but im seeing her next thursday so i guess we will see what happens.
At the moment my lifestyle is fairly unaffected. Im just really concerned that cos the meds arnt doing anything for me the next step potentially will start affecting the things i love.

Well anyway thats my story and thanks to anyone who has managed to stick with it this far!!

 

[pcbgirl227]

G'Day from the States and Welcome!!! Surgery is always a scary option, I have had two, and one you need to do as a last resort. I would certainly suggest going with different meds first to see if would help!! Good Luck and keep us posted.

 

[Dustin]

Hello burnside97, and welcome to the forum! You will find that most people on here will suggest going with the med option first, and treat surgery as a last resort. I completely agree with this, as Crohn's has a nasty habit of coming back after surgery, and you can only have so many of them. Many of us have had great results with biologics (Remicade, Humira...). I have been on Remicade for a number of years now, and have had great results. I hope you get your symptoms under control quickly without the need for surgery.

Good health and best of luck.

 

[Astra]

Hi Burnside
and welcome

Hope you find lots of info on here before you make that decision, I'm hoping to try Remicade next, and try to avoid surgery if I can
good luck with gastro
lotsa luv
Joan xxx

 

[burnside97]

Found some very interesting information already! I used to be the best sleeper, always waking really refreshed. And about 12 months ago i had the begginings of SEVERE insomnia! Which really was around the same time i went on to the high dose of pred!

 

[Rob]

Hey mate welcome too the forum
hope ya find more info on here too help ya out

and I agree with the avoiding surgery route as long as possible, that's what in doin ATM with trying a new medication

 

[Nancy Lee]

Hi Burnside and welcome to the forum!!

I know about the sleepless night on Prednisone. Not fun!

Okay..before any surgery, which should be a last resort in my opinion...
ask your doctor about Remicade.

Apparently it works wonders on most Crohnies!

I was diagnosed 13 years ago and as of yet, (knock on wood),
have been able to avoid surgery by trying different drugs.

We have not reached the Remicade stage yet but
I know if I get much worse in the days and years to come
my doctor will bring out the big guns, so to speak, before surgery.

I'm glad you came here....you'll find a wealth of information
and along the way meet new friends who are in the same boat.

Welcoming hugs~Nancy

 

[Kev]

Surgery is a useful option IF there are no other viable alternatives. I've had some in my past (they really aren't bad at all, just not something to jump into without checking out all of your options), but they only gained me a little bit of 'well' time.

I finally found a medicine that is working for me. (I was on Imuran.. aka AZA, but it didn't work for me). There are many others IF your current treatment fails to turn things around for you... such as Flagyl, Methotrexate, Remicade, Humira, Cimzia... Some folks have found relief by trying things like the SCD (Specific Carbohydrate Diet).. Some folks have tried therapies like Helminth...
You have options.. explore them. At some point, surgery may be required, its no big deal. Many of us here have gone under the scapel, and we're all here to talk about it. Anyway, welcome to the Forum...

 

[3132757]

Burnside! Welcome to the forums mate, you will find great support and information here.

I am also a fellow 23yo Aussie with CD and i LOVE cycling too! Its my vent and addiciton.

Where about in Oz are you? Im in Sydney.

Fou

 

[alexandros8]

Welcome! I think Kev said exactly what I wanted to say... so just re-read his post.

And if you do have questions about surgery, I just had one so I can help. But def. do your research on all your options. There's a ton of info here. Good luck!

Alex

 

[Tan]

Hi from one Aussie to another!! Welcome to the forum Burnside.

Like everyone else has said before me surgery is def the last option you want to look into. There are heaps of options out there as Kev has pointed out from the normal crohns toxic meds to even going the natural route although I dont think this is an option in your case.

I have tried Imuran and 6mp, am going the natural route at present and going ok at present but have another scope in 3 weeks to see how Im going internally to determine if I have to go back on meds. My doc has discussed what the next lot of drugs will be these included Metho (something a rather can't remember how to spell it), Humira and Remi. He also mentioned maybe trying Entocort but it isn't on the Aust PBS so I would have to pay the full cost of this drug, so I dare say these will be the similar drugs your GI will probably go thru with you.

I know what you mean about sleepless night due to pred my god I remember those like they were only yesterday I was wondering why for a few weeks I was having the worst night trying to sleep while my brain felt alive and ticking, it got to a stage I was going crazy so I went to the chemist to ask what was going on and straight up they said pred makes you not sleep didn't they tell you that, make sure you take it in the morning to try and help.... I ended up taking sleeping relaxants to help sleep and I must say they did help me, so maybe you could give them a go or try the natural ones at the chemist as they are less addictive.

Ok well good luck with your GI appointment let us know how you go.

P.S. which part of aus are you from?