Hello!

[freedom]

hello my names daniel i live in Australia! i have been reading the forum for a couple days now and i like it! people i can actually relate to for once and ask questions and find more things on this stupid pain in the stomach
i was diagnosed with Crohn's disease 2 years or a little more ago i am now 16 turning 17 later on in the year

how do you guys cope with it?
my life is basically ruined, my schooling the most, i have had to repeat year 10 once already, and the way i am going right now looks like ill be doing it again.
and then there is my sport, i am always missing training and games because i am too sore in my stomach to move around much and i spend most of the time bent over i worry so much whats to become of my life if all i do is sit at home feeling sick
not to mention all the weight i have gained its very embarrassing for myself .
anyway i hope i enjoy to my stay at this forum and looking forward to meeting you guys! if theres any questions you would like to ask me go ahead and ask

 

[D Bergy]

Hello and welcome Daniel.

We have the same name only on opposite sides of the planet.

I was curious if you are on any type of treatment for your Crohn's? I am not even sure how they treat it in your country. Your life may be ruined at the moment, but it can get better. It is a matter of finding something that works for you. Not always easy. but not impossible either.

Anyway, take a poke around the forum and you can see what others are doing to control the problems with this not so fun disease.

Dan

 

[freedom]

at the moment i am on
5mg prednisolone x1
50mg Thioprine (azathioprine) x1
250 Mesasal (mesalazine) x2
per day. and sometimes two pain killers. (neurofen plus) if you have it in your countries

at the moment i know its bad i am self treating with one extra steroid sometimes two. because i just cant take being sick, even yet i am still sick sometimes with it.:ybatty:

 

[D Bergy]

I certainly would ask about getting a better medication that works for you. If something is not working, then it is time to move on.

If you have had improvement then maybe dosage needs to be tweaked a little. I would ask your physician for some guidance on this.

Dan

 

[Kev]

Yeah, welcome Daniel. I think those meds are a good starting point, they just look a little on the low side (dosage wise) to me... an untrained, unqualifed old man. run that by your doctors next time. Like, azathioprine is ususally given in much higher doses.... personally, my targeted dose was to be in the 250 - 300 mg range (never reached it, became toxic at the 100 mg ramp up) and it had to be in the body for a while before it kicks in. Same goes for pred. first time I was on it, my body didn't show any real improvement till I ramped up to 40 mg... and stayed there for 2 weeks. Subsequent times I went on pred, it seemed to have less effect at previous dosages/time spans than before. So I would wonder if simply these drugs aren't at sufficient dosages AND not enuff time has passed for them to have a 'notable' impact on your situation. Its' well worth asking your doc, and if he/she reacts like... 'well, who are you to question your meds" you can either remind them you are the one taking them, and depending on them to work" ELSE you can blame it all on a silly old fart...

 

[BWS1982]

Well seeing as how I hate prednisone with a passion and want nothing to do with it ever again once I'm off it (tapering still, have to go slow as my Crohns seems to enjoy it's absence)...all I can advise of is that if you can get by with a lower dose or even none, do it....I wouldn't recommend taking more than prescribed, even though 5mg is a very low dose, you are that much closer to being off it...best of luck

 

[TheyCallMeRC]

Daniel, the only thing I will throw in to this is if you are self medicating yourself ( been guilty in the past too ) just be careful and make sure you don't run out of prednisone if you have bumped it up. There is a reason you have to taper off. Your body produces the same chemical that the Prednisone gives you and when you take high doses of it, then your body reads this and stops producing it on it's own. So, if you abruptly stop taking Prednisone, then your body takes some time to start producing the chemical again and your body can go into shock. Just some advice and listen, I know you think your life is ruined, but you can adjust and lead a fairly normal and happy life. I have had this disease for 13 years now and although times can get tough, it could always be worse. Just keep your head up and do everything your doctors tell you and everything will be o.k. You have plenty of people to talk to here and just know you aren't alone. Take care.

 

[Kev]

HEY! Just so there's no confusion.. I wasn't suggesting increasing your med w/o doctors advice... I said to run it by your doctor... FIRST! don't self medicate. It's a BAD idea. I am not a pill taker... I don't even like taking aspirins for a headache. So I'm not advocating overdosing on pills of any kind... just that if one has to take meds... its' pointless to take them in ineffective doses that are too low to do any good... Taken in the safest, effective dosage for the shortest time required is (in my humble opinon) the best choice. Too hi is no good (could be fatal) BUT too low, requiring protacted use, or failing to do any good; possibly being written off as totally ineffective, that's no good either